Acromegaly Bloggers

New Bloggers!

2011-11-17T23:02:00.000-08:00

Hello dearest readers!

I just wanted to take a moment to draw your attention to two new bloggers that have been added to the sidebar to the right --------->

Brotha writes about Living with Acromegaly at acromegallic.blogspot.com. "I'm trying to find a way to turn this into something positive, so I decided to write about it and share my day, feelings, fears, joys, and whatever else I may think of with you. And in turn my this will be therapeutic for me and entertaining to you." Brotha is so inspiring!

Emer was diagnosed with a pituitary adenoma secreting thyroid-stimulating hormone less than a year ago, and she writes about all kinds of pituitary tumors in her incredibly humorous blog Pituitary Ademoaner (pituitaryademoaner.blogspot.com). In her recent post profiling famous people with pituitary tumors, she writes, "Acromegalicious folk are obviously awesome," and I think she's awesome too!

Check out both blogs when you have the chance, and make sure to introduce yourself or say hello to them in the comments!

If there's anyone else out there that wants to be added to the roster, just leave a comment on this blog with a link to yourself!

No more octreotide hydrogel implant

2011-11-17T22:24:00.000-08:00

Endo Pharmaceuticals reportedly stopped development of their octreotide implant, despite studies that showed that it was safe and effective. I wonder why? I mentioned the discontinuation of the implant to my husband, and he suspected that everyone's focus has shifted to oral ocreotide (a pill that would deliver the same medication). Maybe so, but with a pill you have to remember to take it every day (or however often), you'd probably have to keep it refrigerated so travel might be annoying, and of course there would still be the whole hassle of getting your prescription filled, etc, etc. Don't get me wrong! The pill sounds great too! But I really wanted to try the implant and I was waiting for it to become available.

I tried to join the clinical trial for the implant a few years ago, but I was disqualified because my growth hormone levels were beyond the allowable levels while on an alternate medication. I was so disappointed! That implant gave me the promise of being "normal" for 6 months at at time... no injections every few weeks, no visits to the medical center, and no struggles between the health insurance and pharmacy every time I had to refill my prescription. No reminders that I'm different than everyone else for 6 months.

Earlier this year I met one person at the acromegaly community conference who had the implant, and she seemed pretty happy with it (she made it into the clinical trial plus they had an extension). I looked at the place where her implant was inserted and it looked pretty subtle, it seemed comfortable enough, and if it's true that you don't have to think about it for 6 months, then I'd be so thrilled!

These days I have my intramuscular ocreotide injection administered at home, by my husband who has been trained by a nurse on how to do it properly. I also have a short acting subcutaneous version I give myself in addition to the long acting one, just for days when I can feel my symptoms acting up (swelling, headaches, joint pain, acne, etc). I just happened to have my intramuscular shot today and that's what reminded me of the article I saw about the implant being discontinued. Even having the shot done at home is still a hassle, with the ordering/refilling, storing, scheduling, mixing and injecting. I have a huge bin of "sharps" in one of my cabinets and every time I see the medication in the fridge I'm reminded that there's something wrong with me. I worry about what people will think if they see all my sharps in the bin and the medication when they come over. Oh yeah, and sometimes the injection hurts (although my husband has gotten really good at making it quick and relatively painless).

I wish they would have continued bringing the implant to the market. If nothing else, it would have given acromegaly patients like us OPTIONS and potentially FREEDOM from a routine of ongoing injections. I was so happy that people were at least trying to make our lives a little easier, as opposed to just accepting whatever existing treatments were out there already. I appreciate the all the work that every researcher does towards creating new treatments (everything that's out there right now, things that are shelved like the implant, and the oral one that's in the works). It's important that people keep working on better treatments, and don't forget that as the acromegaly treatment landscape more competitive, it could drive the prohibitively high price of treatment down for everyone.

Anyway, hopefully people are really just working on a real end-of-story CURE for all us. There's some amazing research going on out there with viruses plus our own immune system that has shown to be effective for cancer. It can't be that much further down the line before this knowledge is targeted towards pituitary tumors! Till then, I hope we'll all be here for each other.

Pituitary glands grown from mouse embryonic stem cells

2011-11-14T12:11:00.000-08:00

Woah!

via http://www.guardian.co.uk/science/2011/nov/09/pituitary-glands-embryonic-stem-cells

This could lead to some very interesting treatments for those who have hypo-pituitary symptoms after radiation or surgery. And eventually, who knows how this could impact the treatment of acromegaly?

Pituitary glands grown from mouse embryonic stem cells

If the same trick can be repeated for human pituitary glands it could transform the treatment of debilitating hormone disorders

David Derbyshire
guardian.co.uk, Wednesday 9 November 2011 13.26 EST
Article history

Mouse pituitary tissue grown from embryonic stem cells. Fully grown glands produced hormones when transplanted into mice. Photograph: Yoshiki Sasai/RIKEN

Scientists have grown working pituitary glands in the lab that could potentially transform the treatment of people with a range of debilitating hormone disorders.

The team of Japanese researchers grew the tiny hormone-secreting organs using stem cells taken from a mouse embryo. When the tissue was transplanted into mice with pituitary gland defects, it raised levels of the missing hormones in their bodies.

Dr Yoshiki Sasai, who led the study at the RIKEN Centre for Developmental Biology in Kobe, Japan, said: "It is difficult to guess how long it will take, but we hope that we can produce human pituitary tissue in the next three years." It would take longer to develop techniques to transplant the cells, he added.

The creation of spare body parts for transplant is one of the goals of stem cell science. Stem cells are the body's "master cells" and can turn into a range of different types of tissue, such as brain, muscle or pancreatic cells.

Any tissue or organs grown from patients' own stem cells would not be rejected by the body, doing away with the need for immunosuppressant drugs.

Pituitary glands – the oval, pea-sized organs at the base of the brain – are a particular challenge for stem cell researchers because they are so complex. They have two distinct parts and secrete at least eight hormones regulating growth, fertility, breast milk production, blood pressure, contractions during childbirth, temperature and water balance.

Using mouse stem cells arranged in a three dimensional culture, Dr Sasai's team mimicked the way pituitary glands develop in the embryo. The resulting tissue contained all five types of cell found in a normal gland and took around three weeks to grow, the scientists report in the journal Nature.

"We have made hundreds of pituitary glands from embryonic stem cells," said Dr Sasai. When the tissue was transplanted into mice with pituitary defects, levels of missing hormones in their bodies rose to normal.

Although the researchers used embryonic stem cells in their experiment, they believe the technique could work with stem cells derived from adult tissue – so-called induced pluripotent stem cells. That would avoid the ethical concerns some people have about using human embryos in research and therapies.

Even if the scientists can grow a human pituitary, they still face major obstacles in creating a safe and efficient way to transplant it, Dr Sasai said. However, he believes lab-grown glands could lead to treatments for growth hormone deficiencies and damage to the pituitary glands caused by surgery and Sheehan's syndrome.

Women with Sheehan's syndrome, which results from blood loss during childbirth, have problems breastfeeding, suffer tiredness, weight gain, constipation, low blood pressure and slowed thinking.

Prof Robin Lovell-Badge, one of Britain's leading stem cell experts at theMedical Research Council's National Institute for Medical Research in London, said: "It is unlikely that these in vitro-derived pituitaries are fully developed and make hormones in precisely the same way as normal.

"However, the fact that they got as far as they did is impressive. It suggests that there is a fair amount of self-organisation, which means that it might be easier than we thought to build not just pituitaries, but also other organs from embryonic stem cells and induced pluripotent stem cells – as long as they are not too complex.

"It also opens up new possible ways for treating patients with defective or missing pituitary glands."

2nd California Hormonal & Pituitary Health Symposium

2011-09-23T15:04:00.000-07:00

2nd California Hormonal & Pituitary Health Symposium

Saturday, October 22, 2011
7:30AM-4:00PM
Santa Monica College Performing Arts Center
The Edye Second Stage
1310 11th Street, Santa Monica, CA 90401

THERE IS NO CHARGE TO ATTEND THIS EVENT
Continental Breakfast and Box Lunch included. Seating is limited!
You must pre-register to attend !

To register, go to

https://www.academiceventmanagement.com/event_detail.php?id=31

or call Pat Fitzwater at 805-300-9154
or email pat@academiceventmanagement.com

For more info, please visit the web @

http://brain-tumor.org/files/Patient%20Symposium%20Oct%2022%20Agenda%20for%20BTC%20Website%20PDF.pdf

(PDF file)

Raw Food Diet

2011-09-12T15:59:00.000-07:00

I've been trying to change my diet for my health the last few years since I've had Acromegaly and as a result, high blood pressure. I grew up on a high dairy diet (I loved milk, cheese, ice cream and eggs), then as an adult I transitioned to a higher protein, higher fat diet (thank you fast food) which also included high dairy. It seems a 100% raw food diet may be much more beneficial than I first thought. When I tried to go raw before I didn't stick with it, in part due to habit and societal reasons. What I didn't realize at the time, was that I was also probably in a detox phase that was uncomfortable. If I can find the motivation I'm going raw/organic. It's sobering to think my own diet may have caused my Acromegaly. I wish there was a way to cure or reverse the condition without medications. I've already transitioned to a very low salt diet (way under 1500mg/day) and have lowered my blood pressure to a normal level so that I don't need blood pressure medication anymore. My skin also looks better, it's no longer super dry to the point of flaking, and I have less acne.

Why Raw Food?

New guidelines for the treatment of acromegaly, a serious growth hormone disorder

2011-09-06T08:25:00.000-07:00

By Jon Danzig, award-winning medical journalist [email Jon Danzig]

Introduction

It’s said a lot can happen in seven days. In seven years, a lot has happened in the understanding of acromegaly, a debilitating condition that causes a patient to have too much growth hormone.
It’s seven years since the American Association of Clinical Endocrinologists last produced guidelines for the diagnosis and treatment of acromegaly. Their 2004 guidelines were just 13 pages long. Their latest, the 2011 guidelines, have grown – to 44 pages.
In 2004, the Association reported acromegaly as an “uncommonly diagnosed” disorder with an annual estimated incidence of 3-4 cases per 1 million people. In the 2011 guidelines, it’s added that newer studies suggest a much higher incidence (although I believe the authors meant prevalence, not incidence). A Belgian study proposing 130 cases per million; a German study concluding 1,034 cases per million. This, reports the Association, suggests that acromegaly “may often be under-diagnosed”.

In 2004, the guidelines made no mention of the psychological damage caused by acromegaly. In contrast, the new 2011 guidelines discuss possible irreversible “psychological alterations” associated with the disease, including depression, mood swings and personality changes. Similarly, the 2004 guidelines made no reference to acromegaly patients ‘quality of life’. By comparison, the new guidelines acknowledge that patients with active acromegaly, and even those in remission, can have significant quality-of-life issues that it recommends should be addressed.

The 2004 guidelines agreed that the gold standard check for acromegaly was an oral glucose tolerance test, with a normal result being a growth hormone level of less than 1 ng/mL. The Association now suggests that be changed – to less than 0.4 ng/mL.
Although the 2011 guide doesn’t report any new drugs since 2004, novel ways of combining the existing drugs are featured, with efficacious and cost benefits.
And yet...

Both the 2004 and the 2011 guidelines report no change in the delayed diagnosis for acromegaly – it’s still up to ten years.
Both the 2004 and 2011 guidelines report no change to the proportion of patients found with large tumours – it’s still around 80%. For them, surgical cure rate, even in the best hands, is still 50% or less.
Many patients with acromegaly still have uncontrolled disease.
Even those in remission can suffer “quality-of-life” issues years later.
Most people with acromegaly, of which there may be many more thousands than previously realised, remain undiagnosed.

So, despite the impressive increase in size of the growth-disorder-guidelines over seven years, the improvements seem to have been more subtle and slow.
Below I have presented my own stylised summary of the 2011 guidelines. This I’ve put together mainly for patients, their families and friends, and primary care attendants, all of whom can play a vital role in the earlier detection of this potentially life-threatening condition.

Defining

The definition of acromegaly is clear enough: it’s the excess secretion of growth hormone, causing “multi-system associated morbidities” and “increased mortality.” In almost all cases, the cause is a non-cancerous tumour of the pituitary, a pea-sized gland that’s situated at the front base of the brain and responsible for producing hormones that drive many vital functions of the body.

There’s no doubt that acromegaly is a serious illness, with a long list of debilitating and often disfiguring symptoms. (Hardly “relatively symptom-free” – the claim made by one ‘expert’ doctor that caused me considerable problems when I objected. See The Guardian newspaper report: ‘Charity accused of mistreating its members.’)

The Association’s new guide reports that acromegaly can lead to “a myriad of soft tissue and bone overgrowth” problems. Most patients (86%) will present with enlargement of their extremities (hands, feet, nose), excessive perspiration (up to 80%), thyroid nodules (73%), joint pains (75%), facial changes (74%), sleep apnoea (70%), carpal tunnel syndrome (up to 64%), type 2 diabetes mellitus (56%), and headaches (55%).

About half of patients will have a pituitary tumour that also secretes excess prolactin, a hormone primarily responsible for stimulating milk production after childbirth. This hormone, in surplus, contributes to menstrual problems in women and testosterone deficiency and sexual dysfunction in men.

Almost half of patients will present with high blood pressure, impaired glucose tolerance and heart disease. Many acromegaly patients commonly report fatigue and weakness. And new for the 2011 guidelines, the Association reports that acromegaly appears to be associated with psychological changes and alterations in personality. Patients often have depression, apathy and considerable mood changes. One study suggested that acromegaly could cause cognitive impairment, but the Association advises that further investigations need to be undertaken.
Other factors include an increased risk of cancer, although a possible connection with colon cancer remains unclear. The tumour itself can also cause visual defects. My summary isn’t exhaustive. The list of recognised symptoms associated with acromegaly has grown since the 2004 guidelines. I suspect even more will be discovered in the next seven years.

The biggest risk of all, however, remains the same: untreated acromegaly is associated with a 2 to 2.5 times increased mortality compared to healthy people. Fortunately, this risk is abrogated – or cancelled – once acromegaly is properly controlled. What is the correct definition of ‘properly controlled’ is still being continuously debated and refined.

Finding

Finding and diagnosing acromegaly patients as early as possible is still the best way to achieve an outright cure and avoid the long-term disabilities associated with the disease’s progression. Yet the 2011 report states that diagnosis is typically delayed by 7 to 10 years in most patients. By then, the pituitary tumour is usually large and more difficult to completely remove with surgery.

Even in the best hands, surgical cure rates of patients with a large pituitary tumour are only between 40% and 50% (and surgery is usually considerably less successful if the tumour is very large and/or the growth hormone levels are very high).

There’s also a financial incentive to ‘find and fix’ acromegaly patients as soon as possible. Acromegaly is a disease “with a substantial financial economic burden”. In Canada, ongoing treatment for patients who had large tumours cost on average CAN $11,425 per year (about £7,000 per year; 1998 figures, no doubt higher now).

Early diagnosis of acromegaly is rarely achieved, however. That’s because, states the 2011 report, the onset of acromegaly is insidious and often non-specific, with symptoms such as lethargy, headache and increased sweating – signs often mistaken for ageing.

Surprisingly, only a fraction of patients are discovered because of the classic signs of acromegaly, that slowly develop over years (enlarged feet, hands, lips, nose and jaw; often protruding forehead and rough, pronounced facial features). Most often patients themselves are not even aware of the harmful changes happening to them, because they are so gradual.
There’s a need, reports the 2011 guidelines, for primary care physicians and other medical groups to be better educated to watch out for the signs and symptoms of acromegaly so that earlier diagnosis can be achieved.

The dentist, for example, could be suspicious of a patient whose lower jaw is protruding further than the upper jaw – a typical symptom of acromegaly patients. The optician should be alerted by a visual field defect that might be caused by a pituitary tumour. Rheumatologists often test for disorders that might also lead to a diagnosis of acromegaly.
The new guidelines propose that doctors should consider acromegaly when two or more of the following 12 symptoms are present:

New onset diabetes
Wide spread joint pains
New or difficult to control high blood pressure
Heart disease
Fatigue
Headaches
Carpal tunnel syndrome (pain in hand and fingers)
Sleep apnoea (snoring with breathing difficulties)
Excessive sweating
Loss of vision
Colon polyps
Increasing difficulties in closing the jaw

Once suspected, acromegaly is easy to diagnose. A simple and quick blood test to check for abnormally high serum IGF-1 levels is reported in the new guidelines to be “excellent for diagnosis, monitoring and especially screening” for acromegaly. It’s vital, however, that the IGF-1 test is age and sex matched to normal subjects.

IGF-1 (insulin-like growth factor 1) is produced by the liver in response to growth hormone secreted by the pituitary gland. IGF-1 then circulates in the body and stimulates cell growth. In acromegaly, excessive growth hormone generated by the pituitary tumour leads to the liver over-producing IGF-1.

A random one-off measurement of growth hormone itself is not helpful as it’s too variable. Measuring growth hormone levels to diagnose acromegaly requires a more specialist procedure, called an Oral Glucose Tolerance Test, and is still considered the ‘gold standard test’ for acromegaly.

After drinking the glucose following over-night fasting, blood is taken every half-an-hour for two hours. In patients without acromegaly, serum growth hormone levels will fall to 1 ng/mL or less (although the Association is now considering a new cut-off point of 0.4 ng/mL). In patients with acromegaly, the glucose fails to suppress growth hormone levels and they remain above 1 ng/mL.

However, the new guidelines also state that this ‘gold standard test’ can be skipped altogether if IGF-1 is elevated and there are signs and symptoms of acromegaly. That certainly makes diagnosis simpler, quicker and cheaper.

Following confirmation of acromegaly, an MRI-scan should be ordered to check the size and exact location of the tumour attached to the pituitary gland.

Patients diagnosed with acromegaly need to be regularly re-tested for the rest of their lives. The pituitary tumour has been known to recur, sometimes many years later.

‘Fixing’

Most patients with acromegaly are never fully ‘fixed’ or entirely free of the disease and its long term damage. Some may disagree, but I believe it can be postulated. After all, it’s rare for chronic internal medical diseases to be 100% ‘fixed’; more usually it’s hoped that they can be improved or put into remission or controlled.

As Professor Laurence Katznelson, Chair of the committee that drew up the new guidelines, wrote to me, “Many patients with acromegaly are left with residual difficulties."

Subsequently, some acromegaly patients have also written to me saying it’s inappropriate for doctors to use the term ‘biochemical cure’ - meaning their blood test results no longer show signs of acromegaly – when they continue to suffer debilitating symptoms.

Out of 100 patients discovered with acromegaly, about 20 will have a small pituitary tumour and about 80 a large one. Depending on which surgeon operates, surgery alone will result in a ‘biochemical cure’ in only about half, more or less, of the 100 patients. Medication or radiation will achieve ‘biochemical cure’ in many, but not all, of the rest.

Although ‘biochemical cure’ is now much more achievable than previously, and can result in considerable improvements for patients, it’s agreed that it doesn’t necessarily equate to satisfactory elimination of the disease and its consequences in many patients.

This is discussed in the new guidelines, which report that many patients who have been in ‘biochemical remission’ for years continue to suffer quality-of-life issues, especially relating to musculoskeletal complications resulting in significant joint pains. Adverse changes to appearance caused by the disease can also cause profound difficulties. Unlike soft tissue changes in acromegaly, bone enlargement caused by the disease is permanent.
Significant psychological issues can also persist despite the biochemistry apparently being in normal range. The new guidelines raise the possibility that acromegaly can cause irreversible changes to mood and behaviour. The authors recommend that all acromegaly patients, whether with active disease or in remission, have attention to quality-of-life issues.

New theory on why ‘cured’ acromegaly patients still suffer

New research conducted jointly in the Netherlands, Denmark and the USA proposes a novel theory as to why so many acromegaly patients apparently under ‘biochemical control’ still have ongoing symptoms. If the theory transpires to be true, it could radically change the medical treatment for all acromegaly patients who fail to be cured by surgery alone.

The international team of doctors put forward a new paradigm – or model – for ‘systematic acromegaly’ that affects patients who are treated with an acromegaly medicine that’s widely used called ‘long acting somatostatin analogues’ . According to the new theory, these patients could still have acromegaly in many parts of the body, other than the liver, because of the way this particular medicine works. Consequently, this ‘remaining acromegaly’ is hidden as it doesn’t show up in IGF-1 testing. It means, say the researchers, that these patients continue to suffer the damaging effects of excess growth hormone, even though their biochemistry indicates that they are in ‘normal range.’

The research team, led by Dr Sebastian Neggers of Erasmus University in the Netherlands, has named this ‘peripheral’ or ‘extra-hepatic acromegaly’ (i.e. acromegaly outside the liver). He claims that this ‘peripheral’ form of acromegaly has, “a significant negative impact on the quality of life of many patients who were previously considered to be biochemically cured.”

The authors of the concept claim that, if their hypothesis is correct, it could mean that the medical treatment for acromegaly patients will require “a significant update”. In particular, their theory challenges whether IGF-1 is a reliable marker of disease activity in acromegaly patients. There is a need, the researchers believe, for newer measures of acromegaly to be developed, “either genomic, metabolomic, proteomic, or others” which integrate both ‘hepatic’ and ‘peripheral’ or ‘non-hepatic’ forms of the disease. Such new markers of the disease could also help to optimise treatment on a more individual basis, especially with regard to ‘quality of life’ issues.

Dr Neggers and his co-workers also conducted additional research indicating that if treatment with ‘long-acting somatostatin-analogues’ is combined with another drug, called pegvisomant, this can successfully resolve the “remaining, peripheral form of acromegaly.” (See section on ‘medication’ below).

However, the new theory does not appear in the new American guidelines for acromegaly, and Dr Neggers admits that, “around the world there are some non-believers.” One leading professor of endocrinology told me he remained “agnostic” about the hypothesis. The American Association of Clinical Endocrinologists advised me that they only included data in their latest guidelines that had achieved “general consensus”, but if the new theory proved to be accurate, it could appear in the Association’s next guidelines.

Dr Neggers and his team are now calling for other scientists, clinicians and pharmaceutical companies to conduct further studies to test whether their theory is correct.

New research in Germany indicates that acromegaly might affect millions more people than previously thought. In the past, it was estimated that the world-wide prevalence of acromegaly was only about half-a-million. But if the German study quoted in the new American guidelines is correct, the worldwide prevalence of acromegaly might be as high as 7 million.

Also of interest, acromegaly appears to affect both sexes and all races in equal proportions.
There’s no known way to avoid getting acromegaly, since so far we are not even sure what causes it in the first place. The best chance for patients is to be discovered in the very early stages of the disease, when the tumour is small and there’s the highest chance of a real cure through surgery alone. For the rest, the majority, the doctor’s toolbox is limited: to surgery, medication or radiation.

The new guidelines report five goals in the treatment of acromegaly:

To bring the chemical measures of acromegaly to normal
To control the size of the tumour
To reduce the signs and symptoms of the disease
To prevent or improve medical conditions related to the disease
To prevent premature mortality

The following methods can be used alone or in combination to try and achieve these goals:

Surgery – it remains the most effective option to achieve rapid and complete cure for all patients who can have surgery. Even if cure doesn’t occur, the reduction in tumour mass can result in considerable recovery and also improve the response of subsequent medication. These days most pituitary surgery is endoscopic transsphenoidal through the nose, which is minimally invasive. The most experienced surgeons – those performing at least 50 transsphenoidal procedures a year – have the best outcomes with low mortality and morbidity.

Medication – for those who cannot have surgery, and for those for whom surgery did not result in a ‘cure’. There is also some evidence, according to the new guidelines, that medication taken prior to surgery might result in a better post-operative outcome.
There are three classes of medical therapy: dopamine agonist, somatostatin analogues and a growth hormone receptor antagonist:

*Dopamine agonist – (tablets) usually cabergoline. Sometimes used as a first-line medical therapy because it’s taken orally and inexpensive. However, it’s only effective in a minority of patients, and usually only considered for patients with ‘mild’ acromegaly.

*Somatostatin analogues – (injections) usually octreotide LAR or lanreotide autogel. The new guidelines report that with this medical therapy, about 55% of patients achieve normal growth hormone and IGF-1 levels. The medication can also result in modest or significant reduction in tumour size in some patients. There have been mixed studies of whether treating with somatostatin analogues prior to surgery improves the results, and the guidelines authors state that further study is needed on this.

*Growth hormone receptor antagonist – (injection) known as pegvisomant, this is the most efficacious but unfortunately the most expensive of the drugs available. It works in a completely different way to the other medications. In patients treated with pegvisomant for a year, the new guidelines report that IGF-1 levels were normalised in 97% of patients, confirming it to be the most effective drug currently available. Patients also reported improvements in their signs and symptoms of acromegaly. To be cost effective, however, the guidelines report that the price of pegvisomant needs to be reduced by one third.

*Combination therapy: the new guidelines describe some success with combining the medications when one alone didn’t work sufficiently. For those who only partially responded to somatostatin analogue treatment, the addition of cabergoline helped 42% of them to achieve normal IGF-1 levels. The guidelines also reported that the combination of somatostatin analogues with pegvisomant often appeared to be more effective in normalising IGF-1 levels than either drug used on its own. In one study (featured in the guidelines) the addition of weekly pegvisomant to somatostatin analogue treatment resulted in IGF-1 levels becoming normal in 95% of patients. Another study (not in the new guidelines) demonstrated that this combination resulted in significant improvements to patients’ quality-of-life. Since this combined therapy usually involves lower doses of both drugs, it’s been argued that this can result in cost savings over the use of one drug alone.

Radiotherapy – usually used as a last resort, when surgery and medication haven’t worked. However, the guidelines report that with the availability of effective medication, the role of radiotherapy has subsequently diminished. It is, though, still used to reduce the need for (expensive) lifelong medication and with a goal of ‘disease cure’.
One downside is that it takes a long time for the radiation to work – from several years to over a decade. The guidelines state that techniques for radiotherapy have improved in recent years, with better targeting to the tumour and subsequently less radiation exposure to surrounding tissue.
The results of the more old fashioned ‘conventional radiotherapy’ have recently been reassessed to take account of the stricter criteria of ‘biochemical cure’ for acromegaly. Whereas previously it was thought that conventional radiotherapy resulted in a remission rate of over 80%, that’s now been revised considerably downwards to just 10 to 60%. Furthermore, conventional radiotherapy can take about ten years to be effective – even longer in patients with initially higher IGF-1 and growth hormone levels.

The more modern radiotherapy is called stereotactic radiosurgery, of which there are several versions, but the new guidelines concentrate on reporting ‘gamma knife’ radiosurgery, because it’s the one most referred to in the medical literature for acromegaly. With this newer, more precise form of radiation, remission can sometimes be achieved in two years, rather than ten for the conventional form of radiotherapy. Earlier studies reported remission rates of 90% for gamma knife radiosurgery, but again, with the stricter definitions of cure, this has now been revised to just 17 to 50% remission rates during two to five years of follow-up. The guidelines state that further studies are needed over a longer time-frame.

There are, however, significant drawbacks to radiotherapy, report the 2011 guidelines. One is the development of hypopituitarism –or failure of the pituitary gland – in more than half of patients after five to ten years. Hypopituitarism has been linked to increased mortality. The authors also point out that similar prevalence of hypopituitarism has been found with the more modern stereotactic radiosurgery, although most studies so far have only reported on less than six-years average follow up for gamma knife radiosurgery.

In a recent talk to doctors (not mentioned in the new guidelines) by Professor John Wass, one of the world’s foremost experts in acromegaly, he said, “In the olden days people gave radiotherapy, really without thinking, to patients with pituitary tumours.” He added that the side effects of conventional radiotherapy include hypopituitarism; some patients develop tumours in the field of the radiotherapy; mental agility was also thought to be interfered with; and radiotherapy may also cause acromegaly patients, ironically, to become growth hormone deficient.

Regarding the newer form of radiotherapy, Professor Wass commented, “I don’t think that the data that have been provided for gamma knife radiotherapy are particularly good.”

The new guide also raises similar concerns about radiotherapy, and points out that acromegaly patients who received conventional radiotherapy were at significant greater risks of “all-cause mortality” than those who did not receive the treatment. The 2011 guidelines advise that long-term data of such risks for patients undergoing the more modern gamma knife radiosurgery are not yet available, since most of the data relates to the older forms of radiation delivery. The newer systems may potentially yield better results, but we will not know until longer-term data become available.

My conclusions

The goal of the new guidelines is to, “update clinicians regarding all aspects in the current management of acromegaly...” Patients also need updating, and I’ve tried my best to summarise the latest recommendations primarily for the benefit of patients, although hopefully physicians will find this summary helpful too.

Given a choice, this is actually the best time ever to have acromegaly. You only have to go back to the middle of the last century – within the lifetimes of many of us – when the prospects for acromegaly patients were much grimmer, with fewer therapeutic options and more premature deaths. We’ve come a long way, but not far enough. Most acromegaly patients remain undiagnosed, and most of those who have been diagnosed had to wait an awful long time, and still suffer long term symptoms.

Doctors and drug companies supply, but often only after patients demand. With doctors, patients and drug companies working together, I’m hopeful that the next guidelines issued by the American Association of Clinical Endocrinologists will be able to report faster diagnosis times, a more realistic definition of ‘cure’ and better therapies to achieve either a real cure, or at least substantially improved outcomes.

Jon Danzig is a medical journalist and writer/director of short films. He won a Lilly Medical Journalism Research Award for his medical articles, primarily about amniocentesis, episiotomy and women being sterilised ‘against their will’. He was an investigative journalist on the prestigious BBC Checkpoint programme; a freelance correspondent in the USA, and ran his own successful media business, Look-Hear.com. Jon’s growing list of short films can be seen on his new YouTube channel at JonDanzig.com Jon was recently interviewed on BBC Radio about his life and career: Jon Danzig BBC Radio Interview. Click here to view Jon’s Linkedin profile.
Jon’s favourite quote: “Knowledge is power” – Sir Francis Bacon
Declared interest:
The author has acromegaly, and has written extensively about how the illness has affected his life and career. ‘My DIY Diagnosis’ – The Independent Newspaper;‘Acromegaly – A Patient’s Journey’ – British Medical Journal; ‘Challenging Doctors’ – Acromegaly.org; ‘Challenging Sleep’ – Pituitary Network Association. ‘No rest for the wilted’ – The Guardian newspaper

(via NewsMedical)

A Revision of the Treatment Options in Acromegaly

2011-08-03T07:41:00.000-07:00

This is a most interesting and accomplished talk by Professor John Wass, one of the world’s foremost experts in acromegaly, a serious illness caused by a tumour of the pituitary gland, that results in too much growth hormone.

It’s a ‘must view’ video for all physicians who treat patients with acromegaly. It’s also important for acromegaly patients to watch, although some may be upset by parts of the content. That, I am sure, was not the intention of Professor Wass, especially as his talk was aimed at medics, not patients.

During the talk Professor Wass commented that, despite the UK being a developed nation, the rate of control of acromegaly patients is “really very poor”, a situation he described both as “salutary” and “humbling”. For patients with uncontrolled acromegaly it will be even more humbling, since they will know first-hand that the condition can dramatically impair their quality of life, as well as potentially shortening it.

Professor Wass conceded that if surgery fails to control acromegaly, patients are often treated next with cabergoline, a drug that only works in about 20% of cases and might cause heart problems. It’s used because it’s the cheapest option; an indication that in the UK at least, cost more than clinical efficaciousness can influence treatment options. Does this provide a clue as to why so many patients with acromegaly are not adequately controlled? Certainly, if my car broke under warranty and the manufacturer offered a cheap replacement part that only worked in 20% of cases, and could at the same time damage the engine, I would not be happy. Patients are not happy to be offered the cheapest, least effective option, especially in the world’s sixth richest economy.

Neither will acromegaly patients derive much comfort if they learn after-the-event that they were treated by an inexperienced surgeon, now it’s understood, as Professor Wass’s talk demonstrated, that their operations mostly failed as a result. Nor those who were urged to have radiotherapy, only to discover from this talk, maybe for the first time, that doctors gave this treatment “without thinking”. With the benefit of hindsight, as Professor Wass advised in his talk, it’s now known that conventional radiotherapy often doesn’t work, and even years later, can cause serious brain and pituitary damage, as well as result in tumours in some patients.

Of course, doctors have to learn, but often its patients who are the guinea pigs for that learning and who pay the highest price for the gaining of the new knowledge. Armed with this knowledge, however, patients also need to be alert. Ignorance in the past may have been an excuse for doctors offering acromegaly patients cheap, ineffective or potentially harmful treatments and procedures, but this can no longer be acceptable. In the internet and YouTube age, information provided to doctors is now available to patients too. We all have to use it wisely.

-Jon Danzig

Faces of Acromegaly

2011-08-01T11:43:00.000-07:00

There was a study published recently about how a computer can be better than a doctor at diagnosing acromegaly (Early diagnosis of acromegaly: computers vs clinician, PDF) based on photos of acromegaly patients. I thought that study was really exciting, because it means that potentially one day, anyone with a webcam can be diagnosed! Of course, the system is not perfect yet, but if it helps encourage people who suspect acromegaly to get a blood test and/or MRI, that means their diagnosis and potential for a cure is that much closer. On the second page of the report, there is a photo of a pair of twins, one who has acromegaly and one who does not, which I thought was fascinating. There's lots of really interesting info about acromegaly in general, such as, "As the prevalence of a disease in a population rises, the outcome of screening becomes more successful. In the last few years, the presumed prevalence of acromegaly has risen from about 50 per million subjects to 106, 124 and 1034 per million in three separate investigations." The article is well written and surprisingly easy to read, even for those without a medical/computer science background so give it a look.

The New York Times published an article about faces last week, which briefly mentioned acromegaly as one of the diseases that can be diagnosed by looking at the face: "... a very broad forehead and large nose may signal acromegaly, a dangerous condition caused by too much growth hormone." I wish they also mentioned jaw enlargement, but I'm glad it was mentioned at all. Hopefully the article will still help raise awareness of the disease, and someone can get diagnosed earlier. I wonder if plastic surgeons know about acromegaly, and they refer their patients to an endocrinologist before going ahead with performing their nose jobs/botox or whatever.

Sandostatin LAR injection in Japan

2011-06-06T07:31:00.000-07:00

Hello, big wave from Japan! ^^/~~

I've been on Sandostatin LAR for about four years now.

In my hospital, patients who are on this medication use the "Sandostatin LAR Administration Calendar,"provided by Novartis. I've never seen one of these when I was getting the treatment in the US in 2007, and I like this material quite a lot because it's easy to keep track on the injection site each time.

Anyway, I was quite amazed when I got this injection in Japan for the first time in 2008.

Here is what happened.

The nurse asked me, "Last time you got the shot, where was your injection site?"

I answered, "Right."

Then, she said, "Where in right, upper or lower?"

"?????? (What the...? Isn't right is just 'right,' Miss?)"

I gazed at her, feeling quite confused.

"There are four sites, you know. Which one was it?"

She continued.

"Four? I thought there are only two; right and left."

Then, she brought this "Administration Calendar."

She is right... There are four sites.

I thought two was enough, but here, we are alternating four injection sites.
Is it just Japanese thing?

"Alone in My Universe" - Finally in my hands!!

2011-03-31T03:46:00.000-07:00

Hi, I'm Ayaka (Sara) from Japan.

Last week, I ordered the book, "Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World." I was initially told that it may take up to 3-4 weeks to Japan, so I thought the books will be delivered in April. Yet, they got here in Tokyo today, March 31st. SUPER!!

I will give several copies to my primary physicians. I'm sure they will love it.

I scanned the book, and it seems to have wonderful stories from patients and useful information from professionals.

I'm so excited to start reading the entire book.

Thank you, Wayne, for all the work to make this project possible!

Purchase from Amazon.com

Purchase from iUniverse

No Levothyroxine?

2011-03-18T08:25:00.000-07:00

Hi, I'm an acro buddy in Tokyo, Japan.
I can't believe one week has already passed since the quake.
You probably know about scheduled blackout and all that, but beside, I'm now very concerned for some pituitary/thyroid patients.

Levothyroxine may become unavailable in Japan.

Here is what is going on...

ASKA Pharmaceutical's Thyradin has a 98% share of levothyroxine in Japan. Their plant is in Iwaki City in Fukushima Prefecture, where the quake hit massively. What happened was that there were some damages in the facility, so they cannot produce this medication at this point.

We do have one ~~week~~ month of stock in the nation, but it is clear that we are going to run out pretty soon. I heard Japan will import levothyroxine from other countries. I hope this problem is going to get solved very soon for all the patients who take this medication.

Praying for Acro Friends in Japan

2011-03-15T09:01:00.000-07:00

My heart is heavy and prayers go out for the people in Japan, especially our fellow acromegaly blogger, Ayaka (Google translate: click here). I was relieved to see her still blogging after viewing the devastation and turmoil her country is suffering right now. The pictures and videos are shocking....there are just no words. I'm so sorry, Ayaka.

Fascinating glimpse into the life of a doctor with Acromegaly

2011-03-14T17:08:00.000-07:00

from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1825563/pdf/canmedaj00702-0063.pdf (PDF), via Jon

ACROMEGALY AND DR. MARK
S. S. B. GILDER, M.B., Toronto

ON FEBRUARY 4, 1855, an individual was born whose chief claim to fame is that he later developed acromegaly and left us a detailed account of his sufferings. Dr. Leonard Portal Mark was the son of the British Consul at Marseilles and was educated in France and at St. Bartholomew's Hospital, London, which he later served as Draughtsman of Pathology-a forerunner of our present race of medical illustrators.

Dr. Mark, who in spite of his acromegaly lived to the age of 75, appears to have been a charming Victorian gentleman, bilingual in French and English, cultured, of considerable artistic talent, and with a good athletic background in his youth. After qualification and the completion of his intern appointments Dr. Mark seemed destined to become a fashionable London practitioner. In his book, "Acromegaly. A Personal Experience," he shows how this pleasant outlook was marred by the insidious onset of acromegaly, which gradually took from him much of the enjoyment of life. He begins his book by saying: "When Fate, shaping my 'ends,' decreed that I was to suffer from the malady Acromegaly (akra = ends, itiega big), she perhaps gave me the greatest compensation possible by causing me to enter the medical profession. After the distress caused bv the one and the enjoyment due to the otherboth extending over more than a quarter of a century-I find myself in the unique position of being able to relate a personal experience of this rare complaint as it affected one with some medical knowledge."

There are several interesting features of this book. In the first place, it did not appear until 1912. when Dr. Mark had had the disease for some 30 years, because for a very long time the stufferer failed completely to diagnose his own case. Fortunately, he had, as a good Victorian, kept a diary from the age of 14 and was able in retrospect to place the date of commencement as 1879 when he was a man of 24. It must be remembered, of course, that the condition was described by Pierre Marie of Paris only seven years later, in 1886, but the striking appearance of acromegalics ensured a rapid diffusion of knowledge of Marie's contribution.

Although Dr. Mark took about 25 years to diagnose his own condition, others had been aware of it for some years. It was probably first discovered by a friend, Dr. Lloyd, who had to give Mark gas for a dental extraction and called the attention of the dentist to the typically acromegalic lower jaw. A little later, Dr. Archibald Carrod, the Barts' physician, made the diagnosis in a teashop. Mlost dramatic of all, Pierre Marie Canad. M. A. J. Feb. 1, 1955, vol. 72 himself picked Mark out of a crowd at an AngloFrench Medical Congress in London as a typical acromegalic. Yet nobody thought of telling poor Mark what was the matter with him though he lhad an impressive list of symptoms for which he consulted medical colleagues fairly frequently. Some, of course, ssumed that the diagnosis was so obvious that Mark must be aware of it. For example, his brother-in-law, who had been let into the secret, called on him one day and discovered a reprint of an article on acromegaly lving on Mark's table; he drew the natural conclusion that Mark had been studying his own case.

The most astonishing feature of the situation is Dr. Mlark's own diagnostic blindness, in spite of a very human preoccupation with his many disabling symptoms. He says, "For some 15 or 20 years, each day when I looked into the glass to brush my hair or to shave, there was a typical acromegalic literally staring me in the face. Yet 1 never recognized the fact." He had noticed for years that his hands were getting bigger, yet he never guessed the reason. When he got out his last winter's gloves, and was unable to get them on, he assumed that they had shrunk in the interval. He had arguments with his bootmaker because his boots appeared to shrink, and this malady unaccountably afflicted his hats as well.
The progressive protrusion of the lower jaw made it impossible to chew anything, and his dentist had to fit a denture over the upper teeth to establish contact with the lowers. He remarks that he lost his ability to whistle, and also that his enlarged tongue interfered with his breathing at night (indeed, it almost led to his death under general anaesthesia). And still the diagnosis eluded him.

At last, one day when he was already 50, the diagnosis came to him while he was walking in the street. He at once discovered that his secret was a secret de polichinelle, and was at first somewhat annoyed at the attitude of his friends. He says, "I felt somehow that I had been duped, that things which I ought to have known, and which by right were mine, had been kept from me. I amn glad to say that this feeling passed away in a few days, and I realized that my friends acted for the best." "Every day since then I . . . . have been more and more convinced that I got my knowledge quite soon enough.

There are some interesting points of ethics arising from this story. Resisting the temptation to reopen the question of the patient's right to know the truth, we may however note the relation of this case history (which, by the way, includes such classical symptoms as headache, visual disturbances, increasing weakness, and disturbance of sleep rhythm) to the common insistence on early diagnosis. Here is the extraordinary spectacle of an intelligent and well-read clinician failing to make a diagnosis which a finalyear student should be able to make at a glance. Dr. Mark sums up the situation with one of his characteristic touches of humour. "We often pray for 'the gift to see ourselves as others see us.' A vain prayer, methinks, when we realize how blind we would still be if it were granted."

To close the story, it should be recorded that from the time when Dr. Mark made the diagnosis to the end of his life at the age of 75 he devoted much of his time to attempts to further the knowledge of acromegaly. His name should be added to the roll of those who out of affliction have drawn profit for their fellow-men.

A simple questionnaire to detect acromegaly

2011-03-14T15:51:00.000-07:00

A simple questionnaire given to 17,000 patients has revealed a practical and cost effective way to discover undiagnosed acromegaly patients. The study also suggested a much higher prevalence of acromegaly than previously considered. The simplest question asked: Has your shoe size increased over the past five years? (I’ve been suggesting this routine question for many years).

A simple questionnaire to screen for acromegaly

via Jon - thanks!

BBC Radio Documentary: "A Tall Story"

2011-03-01T08:12:00.000-08:00

This new BBC radio documentary reveals how it was discovered that, in extremely rare cases, acromegaly/gigantism can have an hereditary cause. For over 99% of patients, however, the cause is still unknown.

BBC Radio Documentary: A Tall Story

The programme will only be available on the internet for the next 7 days, so make sure to listen and share with those you think might be interested right away!

(Thanks to Jon for sending!)

Patient Voices: Rare Diseases

2011-02-03T12:21:00.000-08:00

Listen to Wayne talking to the New York Times about his experience with Acromegaly:

http://www.nytimes.com/interactive/2011/01/20/health/healthguide/te_rare_diseases.html

First Annual Acromegaly Community Weekend!

2010-11-24T12:22:00.000-08:00

(click to view larger version of flyer)

Time	Friday, May 6, 2011 at 4:00pm - Sunday, May 8, 2011 at 1:00pm

Location	Mirage Hotel Las Vegas, NV 3400 Las Vegas Blvd S Las Vegas, NV

Created By	Wayne Brown

More Info	We have scheduled Acromegaly Community’s first annual gathering for patients and their families on the weekend of May 6-8, 2011 in Las Vegas, NV at the Mirage Hotel. The plan is to make the subject matter of the first weekend equally supportive and informative, and full of camaraderie. Since it is our first official get-together, we want to make sure we offer a spectrum of knowledge as it relates to Acromegaly, and the major needs and concerns of Acromegalics, their friends, and their loved ones. We already have a top endocrinologist, psychologist who specializes in pituitary issues, and professionals to work with patients on journaling for their own self-support and reporting to doctors. We are still working on locking down a top-flight surgeon, as well as a physical therapist to discuss proper body movements, and working around joint pain. This is a weekend for you and your loved ones. Make sure you reserve early, and get the discounts! ***Feel free to invite people you think would want to attend. -We are working on potential scholarship opportunities. If finances could stand in your way of attending, please stay tuned!

DATE CHANGED - Pituitary Patient Awareness Day

2010-11-13T17:16:00.000-08:00

I just got a flyer that says Cedars-Sinai Medical Center's Pituitary Patient Awareness Day has changed their date. New info:

Pituitary Patient Awareness Day

Sunday, January 16, 2011

9:00 AM - 3:00 PM

Cedars-Sinai Medical Center

Harvey Morse Auditorium

8700 Beverly Blvd, Los Angeles, CA 90048

RSVP to Allison Pitts at the Pituitary Center, pittsa [AT] cshs [dot] org

I'm actually excited, because I wasn't going to be able to make the previously scheduled date, but I might be able to go to this one! Hope to see some of you there!

Pituitary Gland Problems Have Many Symptoms

2010-11-08T07:38:00.000-08:00

Just received this information from Sharmyn McGraw, a national spokesperson for those afflicted with Pituitary Brain Tumors and/or Hormonal Disorders, about a featured story on ABC Channel 7 news in Southern California. Dr. Daniel Kelly, a neurosurgeon at Saint John's Health Center, talks about pituitary gland problems and the symptoms to watch out for in this video.

Help get the word out - please take a minute to watch the video.

Click Here to read more: Pituitary gland problems have many symptoms

Acromegaly Gals!

2010-10-28T12:22:00.000-07:00

L to R: Karen, Ellen, Tanya and Jenny

About 2 weeks ago, Jenny and I drove to San Francisco together to meet some very special people- Tanya Angus and her mother Karen! They were in town for a new endocrinologist appointment at UCSF, and they were so kind to let us spend some time with them even though they had a super long day driving from Las Vegas to San Francisco with the AMR/MedicWest ambulance team. Some of the ambulance drivers stopped by while we were visiting and I was really happy that I was able to thank them in person for the incredible service they have performed for Tanya (that's an "HONORARY PARAMEDIC" t-shirt she's wearing!), Karen, and indirectly, the whole acromegaly community.

I also had a chance to thank Tanya and Karen in person for their work in raising awareness of acromegaly. Sharing such personal struggles publicly can be tough, but they are willing to do it because they know that people need to get the word out about the disease. I also thanked them for being great role models because even though they are dealing with so much, they still remain incredibly sweet, kind, welcoming, and wonderful people!

Karen is amazing because she knows SO MUCH about everything related to acromegaly - symptoms, medications, new technologies and new developments. She's totally on top of everything! She knows how to talk to doctors in order make things happen and she never stops looking for solutions - I wish that everyone with acromegaly could have their own personal advocate like Karen!

Tanya, Jenny, and I chatted for a while about our lives, which was pretty remarkable because how often do THREE women with acromegaly, all in their thirties, get to hang out? We shared a lot of personal experiences, such as how our bodies have changed and how acromegaly has affected our lives, and our thoughts wondering what might have caused our tumor to grow.

Most of all, it was nice to just hang out and be supportive of each other.

Many thanks to Tina for helping me get in touch with Tanya and Karen, and I hope that she can join us for the next visit! More info about Tanya and Karen's trip is available on their local news website, where there's a great videos of Tanya smiling - I love seeing her so happy!

"Cook" a Pituitary Tumor?

2010-10-03T14:58:00.000-07:00

Via Engadget...

Neurosurgeons use MRI-guided lasers to 'cook' brain tumors

By Darren Murph posted Oct 2nd 2010 11:59PM

In the seemingly perpetual battle to rid this planet of cancer, a team of neurosurgeons from Washington University are using a new MRI-guided high-intensity laser probe to "cook" brain tumors that would otherwise be completely inoperable. According to Dr. Eric C. Leuthardt, this procedure "offers hope to certain patients who had few or no options before," with the laser baking the cancer cells deep within the brain while leaving the good tissue around it unmarred. The best part, however, is that this is already moving beyond the laboratory, with a pair of doctors at Barnes-Jewish Hospital using it successfully on a patient last month. Regrettably, just three hospitals at the moment are equipped with the Monteris AutoLITT device, but if we know anything about anything related to lasers, it'll be everywhere in no time flat.

Physorg

Just a reminder we should always have hope, because new treatments and technologies are being developed every day!

Los Angeles Area - Save the Date!

2010-10-01T20:54:00.000-07:00

UPDATE: DATE HAS BEEN CHANGED TO JANUARY 16, 2011...

The Pituitary Center at Cedars-Sinai Medical Center is holding....

Pituitary Patient Awareness Day 2010

Sunday November 14, 2010

9:00 AM - 3:00 PM

Cedars-Sinai Medical Center

Harvey Morse Auditorium

8700 Beverly Blvd, Los Angeles, CA 90048

RSVP to Allison Pitts at the Pituitary Center, pittsa [AT] cshs [dot] org

Mark your calenders and I hope to see you there! Leave a comment if you plan to attend!

Daily Exercise!

2010-09-28T09:51:00.000-07:00

Do any of you exercise daily? It's something I've undertaken slowly and carefully. I only exercise maybe 15-30 minutes, but I make sure to do it daily. In my case I think it's really helping to combat side effects of Sandosatin like muscle pain and headaches. And I also have more energy and endurance.

Great new survey opportunity

2010-09-09T07:10:00.001-07:00

Acro Friends:

This is fantastic! Another survey to get involved in, but I actually helped in building and crafting this one. The information they are looking to learn is very exciting! These are professional people truly interested in learning about the disease from us. Lets make sure we get a lot of interviews set up.

Market Modelers is looking for individuals who have been diagnosed with acromegaly and are currently undergoing some form of treatment to participate in a 45 minute telephone interview as part of a new research project. There is an honorarium to those willing to participate. If you are interested or you have questions, please send an email to survey@marketmodelers.com and include your contact information (name and phone number). We will contact you to schedule an interview.

Updates on Tanya

2010-08-14T16:08:00.000-07:00

The TV documentary about Tanya Angus, "Help! I'm Turning Into a Giant," is being rebroadcast in the next few days. The next airtimes are Aug 15, 9:00 am and Aug 16, 1:00 pm. Thanks to Tina for the tip!

In case you haven't heard, Tanya's surgery that was scheduled for this summer was cancelled, despite the support of her local community to provide custom transportation to get her to the hospital. Tanya and her family are having a tough time with the setback, so your thoughts and prayers are appreciated! Check out Tanya's website or blog and leave some encouraging messages!

The World's Tallest Man: Still Growing on TLC

2010-08-04T12:18:00.000-07:00

Another show on the life of someone living with giantism is coming up Sunday, Ausgust 8 at 10/9c. I received this via e-mail from one of TLC's publicists:

"At over 8 feet tall, Sultan Kosen is the world's tallest man ... and he is still growing! In this all-new TLC special, we follow his extraordinary journey around the world not only in search of a cure to his gigantism but also to overcome his lonely existence.

As young boy in a Turkish village, Sultan dreamed of a simple life - to grow up, have a job and find a wife. At the age of 8, Sultan began to grow uncontrollably and by his teenage years, the extreme growth had forced him into isolation. Continuing to grow, he soon became the 'World's Tallest Man' which brought Sultan fame and opportunities to travel around the world. While confronting his dangerous condition with medical attention, Sultan begins to seek out relationships. More than anything, Sultan longs for a wife and looks for love online, resulting in his first date ever. He also travels to the US to meet America's tallest man, former Harlem Globetrotters George Bell, and is encouraged with the new friendship. Although still growing, Sultan now lives with newfound confidence and bravery despite the continued threat to his life and his dreams."

Here's the preview:

for those with chronic pain issues...

2010-07-28T21:01:00.000-07:00

Be on the lookout for this AWFUL law! I am totally afraid of a domino effect. Legislators should not be allowed to decide our pain threshold or punish our doctors if we are in pain! I fear doctors fearing prescribing sufficient pain meds.

If people are interested in starting a letter/email campaign, let me know. I can work on one for you to send to your congresspeople.

http://www.nytimes.com/2010/07/29/business/29pain.html?_r=1&ref=health

I saw this printed on a shirt...

2010-07-17T17:12:00.000-07:00

And I interpreted it as a bird eating a pituitary tumor! I asked the woman wearing it where she got it (partially because I felt awkward for staring at her chest for so long and I wanted to break the tension) and it's from an online shirt company called threadless.com. The artist says,

"I taught a human anatomy lab this semester as a lowly undergraduate TA. The lab coordinators are great educators, and I wanted to thank them for their time with a unique gift.

This design was based on one of their teaching analogies about how the midbrain, pons, medulla oblongota, infundibulum, and pituitary gland resemble a hummingbird feeding from a flower."

It's not available for sale anymore, but you can read more about the artist's basis for the design. If you're looking for real acromegaly t-shirts, check out Acromegaly Community's online store!

Neck Pain?

2010-07-17T11:53:00.000-07:00

Here's another news item that I found through the feed reader:

Lateral thinking for uncommon pain

The article describes a woman who was diagnosed with acromegaly and was experiencing neck, back, and facial pain. I myself have a lot of neck (and shoulder/head) pain, and it often does indeed feel like my head is too heavy for my neck to support. Is acromegaly actually making my head heavier? I often feel like my skull is getting thicker all around. If people are experiencing growth in their jaw and frontal bossing, this seems possible.

I have gone to physical therapy to learn neck strengthening exercises, and I have found that massage has been very helpful. I'm willing to try chewing gum and using a soft cervical collar (suggested in the comments) to see if it helps.

Some other similarities that I identified with were a long period stress and misdiagnosis of a "severe illness that had left her doubting her own sanity."

How to spend billions of dollars on public health and research?

2010-07-08T09:17:00.000-07:00

(Note: I know we have readers from all over the world, and even though this post is targeted towards people in the United States, no matter what country you live in, you should still speak up and raise awareness of acromegaly!)

I subscribe to lots of "Action Alerts" for a several different causes, some of them health related. Today I received an email urging me to contact my Representative and request an increase in research funding for a particular disease:

"Next week, a powerful House of Representatives’ appropriations subcommittee will decide how to spend billions of dollars on public health and research."

Well, the be honest, everybody already knows what causes the disease that this email was about, but what we don't know is what causes acromegaly.

We should get active and make our voices heard! We want more research funding for acromegaly!

Find your Representative here:
https://writerep.house.gov/writerep/welcome.shtml

Then tell your Rep you want more research done on the causes, prevention, treatment, and cure of acromegaly! Then tell your friends to do the same! This is our government, let's make it work for us!

News Roundup

2010-07-02T16:57:00.000-07:00

Hello Acromegaly Friends!

I hope you are all doing well! This weekend is a long weekend here in the United States, so for those of you who have extra free time this week or next, I hope you are enjoying it!

There have been lots of progress lately in acromegaly treatment! The following news is from the "Acromegaly News" feed reader in the right-hand sidebar (scroll down a bit, it's the sixth heading down), and in case you haven't been watching, I'll mention the stories that have caught my eye recently.

There are two articles about a new drug called Chiasma, which is the brand name for Octreolin. One interesting thing about Octreolin is that it can be taken orally, which could potentially mean no more injections(!).

Chiasma's Acromegaly drug gets FDA orphan drug status

Chiasma success in oral drug delivery trial

And it seems like Lanreotide (Somatuline Depot), is helping people:

ENDO: Early Data Positive for Lanreotide in Acromegaly

Also there is some news that Lanreotide (Somatuline Depot) and Pegvisiomant (Somavert) work well in combination:

Lanreotide Autogel/Pegvisomant Combo Helps Tough-to-TreatAcromegaly ...

Other news of note - a media outlet has finally corrected the misinformation that was circulating about Tanya Angus:

Giant Woman Tanya Angus Denies Cure

Finally, some accuracy regarding her story! Tanya's acromegaly has not yet been controlled and she is scheduled for surgery later this month. Stay tuned to Tanya's blog for updates!

Jon's New Article: When Doctors are Wrong

2010-06-24T11:08:00.000-07:00

You may remember Jon Danzig from England, who wrote the article, "Acromegaly: My DIY diagnosis." I remember finding that article online back in 2007 and immediately identifying with the frustration of missed diagnosis, and at the same time I was filled with excitement to see that Jon was working to get the word out about the disease.

I've since emailed with Jon and had the opportunity to get to know him better. I'm pleased to point out that he has a new article up at the Testosterone Deficiency Centre's website, entitled, "When doctors are wrong." The title refers to his misdiagnosis as described in his previous article, but it also refers to statements made by a London pituitary surgeon who claimed in a letter to Jon, "for the most part acromegaly is relatively symptom free..." I'd like to introduce that surgeon to all the acromegaly friends I have met online, and have him tell us to our face that acromegaly is symptom free! That statement could have cost Jon his insurance coverage, and it has cost Jon his relationship with a pituitary charity that he formerly raised funds for.

It's a very personal and emotional article, and absolutely worth the read. You should check it out!

Jon, thank you for being so open and honest about your experience with acromegaly, and thanks for raising awareness of the disease so that others may be properly diagnosed earlier!

Where Are the Cures?

2010-06-14T13:48:00.000-07:00

My husband attended an event last week where one of the speakers was multiple sclerosis patient and advocate Scott Johnson. My husband brought Mr. Johnson and his organization, Myelin Repair Foundation, to my attention because they have a new and innovated approach to finding cures for diseases, and we share the same belief that "The system for making new drugs is BROKEN."

From their patient advocacy initiative website, wherearethecures.org:

The Patient’s Manifesto

I believe that patients are not getting an adequate return on the billions of government, non-profit and industry dollars being spent on the research and development of new patient treatments.

I believe that academic scientists, government funding and regulatory agencies, non-profit disease research foundations, commercial biotech and pharmaceutical companies, and entrepreneurs should aggressively seek new ways to accelerate the pace of medical research and the development of new patient treatments for the billions living with diseases who can’t afford to wait.

If you agree with the above points, you can show your support by signing the Patient's Manifesto online. I haven't read through the fine print of what their organization is all about yet, but I was excited to see that there are people challenging the current system and I feel a strong kinship with multiple sclerosis patients because for both diseases, very little is known about what causes them, and we share many of the same experiences that dealing with a chronic disease involves.

It sounds like Mr. Johnson started this organization because he was diagnosed with multiple sclerosis, and the wasn't satisfied with the options available to him. Thanks for being another inspiration for our community, Mr. Johnson! The acromegaly community is getting active and taking matters into our own hands, just like you!

Survey Opportunity

2010-06-10T10:07:00.000-07:00

I have worked with this company before. They are very reputable, and great to work with. They are not looking for too many people though, so please move quickly! Sorry, US only.

Hall and Partners Healthcare, a U.S. based healthcare research agency has been engaged by a major pharmaceutical manufacturer to conduct a study intended to explore the experiences of acromegaly patients as they navigate through diagnosis, treatment, and life with the disease. Participation in this study will ultimately result in helping to develop new treatments and support programs that meet the needs of physicians and patients such as yourself.

The study consists of a 45" telephone interview to be conducted at your convenience during the end of June. The study is open to all U.S. residents; however we are accepting only 10 participants total across the country, so space is limited.

Please note you will not be asked to prepare for this interview in any way, and the research will be conducted in strict accordance with all pertinent privacy laws and regulations, including complete confidentiality of all study participants.

In appreciation of your time and opinions, you will receive an honorarium of $150 upon successful completion of the study.

For more information on how you may participate in this important research study please contact:

Connie
888-770-8660

If you would like to verify the purpose of this study, please do not hesitate to contact:

David Horn
Research Manager
Hall & Partners Healthcare
646 330 5947
d.horn@hallandpartners.com

"Pasireotide (SOM230) Demonstrates Efficacy and Safety in Patients with Acromegaly"

2010-06-09T17:38:00.000-07:00

Every once in a while I get frustrated about the treatment options available for acromegaly, but then I'll hear about new research being performed or new medications being developed and then I will feel a little better about the whole situation. Doctors, drug companies, and researchers do care about us! In that context, I thought I'd share news of a new drug being tested called Pasireotide.

There was a paper published about it recently, which caught my attention. Specifically, the conclusion:

"Conclusions: Pasireotide is a promising treatment for acromegaly. Larger studies of longer duration evaluating the efficacy and safety of pasireotide in patients with acromegaly are ongoing."

Since finding that paper, I have found several clinical trials of it and some other info about it as well. It has been shown to reduce pituitary tumor volume and give positive results for Cushings patients, but more testing still needs to be done.

I know this drug won't be for everyone, but I'm sharing this news to remind people that research is always going on for new treatments, so if you are like me and your levels are still not controlled, there is always still hope!

Has anyone here participated in a clinical trial of it? I'd love to hear about your experience with it!

Reminder: Meetup This Weekend in Chicago!

2010-06-09T15:21:00.000-07:00

Hi Everyone! If you're in the Midwest this weekend, you should consider attending:

The 5th Annual Convention for Adults with Pituitary Disorders

Including: Adult Growth Hormone Deficiency, Panhypopituitarism, Cushings and Acromegaly!

June 11-13, 2010
Chicago O’Hare Marriott Chicago, Illinois

Wayne will be there, hope you can be too!

http://acromegalybloggers.blogspot.com/2010/05/upcoming-events.html

Speakers Bureau

2010-06-06T11:54:00.000-07:00

I am starting to build the page for the website for the Acromegaly Community Speakers Bureau. This is for patients and their families. If you are interested, please email me a head shot, bio (appx 2 paragraph), and the focus of what your speech(es) would be on. Please remember, we will need to chat by phone so I can hear you deliver it first! :) No geographic limits!!!

wayne@acromegalycommunity.com

Wayne's latest article!

2010-06-02T14:46:00.000-07:00

"Man with hormonal condition gets strength through Internet links"

All About Tanya!

2010-05-21T21:45:00.000-07:00

I have been a big fan of Tanya Angus for a while - I first heard of her when Ken blogged about her MSNBC appearance back in June 2009, I admired her acromegaly awareness efforts in January, and Jenny blogged about her TLC television appearance in March. Just today, a comment came in from someone who knows her, and it looks like Tanya has her own website now! It's still under construction, but I thought I'd share so that we can all check it out and express our support:

http://www.tanyaangus.com/

I'm so excited that there is now a centralized place on the internet where I can learn more about Tanya! I've said this before, and I'll say it again... I'm so grateful for all the work that Tanya has put into spreading the word about acromegaly. I truly believe that a REAL CURE is on the way, and it will be a result of people who are motivated by people like Tanya.

I found a new video I haven't seen before on Tanya's website, and it's so delightful to see her smile!

Business Cards...

2010-05-19T23:09:00.000-07:00

I often find myself explaining acromegaly to people, and I want to help them remember what it is so that they can explain it to others and increase awareness of the disease. I went online to a website that offers free business cards, and created this mock-up of a little card I'd like make.

I figure I can hand them out to people I talk to, they can look up "acromegaly" online later on or they can pass it along to a friend. I think it might be useful to share these with people who are in a position to identify people who might be affected as well- people who work with people's hands, feet, skin, teeth, or faces.

What information would you put on an "Acromegaly Awareness" card?

Upcoming Events

2010-05-06T10:50:00.000-07:00

In case you haven't seen this on AcromegalyCommunity.com yet, the Magic Foundation is running...

The 5th Annual Convention for Adults with Pituitary Disorders

Including: Adult Growth Hormone Deficiency, Panhypopituitarism, Cushings and Acromegaly!

June 11-13, 2010
Chicago O’Hare Marriott Chicago, Illinois

All-Inclusive Convention Registration Fee: $155 for members* $190 for non-members* (includes a 1 year membership) *Registration fee includes Friday reception with appetizers, Saturday continental breakfast and lunch, and Sunday continental breakfast and lunch for one attendee. Additional attendees in your family can choose to pay $95 each for all-inclusive package above.

If you're planning on going or have been to this event in the past, please let us know in the comments!

Wayne and Jenny: full resolution, no latency!

2010-04-15T12:05:00.000-07:00

Guess what? Last week, Jenny (Starbucks Addict), Wayne (AcromegalyCommunity), and I met up in person! Jenny and I met for the first time back in January but Wayne and I had only talked over video chat before.

I immediately felt so comfortable and open talking with them. We had dinner together, and it was such a relief to be able to talk about this disease, this life, without having to cushion things or explain. We just had an understanding. And we didn't just talk about acromegaly the whole time- we talked about our lives like old friends do when they're catching up.

Being able to converse in real time was so fantastic - email, chat, and even video chat have a delay between responses which you don't realize until you're sitting in person with someone. As wonderful as it is to have an online community of acromegaly friends, meeting in person is important too! I hope that there will be many more opportunities for us meet up again, and I hope that we can gather more people to join us as well.

We Need To Do Something Like This!

2010-04-11T11:45:00.000-07:00

Let's do what Darius is doing, but for acromegaly. Who's in!?

(via http://www.youtube.com/nonprofitvideoawards)

What Helps? (Part 3)

2010-04-01T10:57:00.000-07:00

Hello Everyone! I hope all of you are doing well!

I wanted to share a little tip I've found to be useful for managing my acromegaly. Many of you are probably doing something similar on your own, but in case you aren't already you should consider keeping an accurate calendar of:

How you're feeling every day (symptoms, appetite, energy level, etc)
Other things going on in your life (stress, exercise, diet) that may have an effect on your acromegaly
When you are due to receive your medication/treatment and what dose (I keep track of the date and which side my Sando shot should be on), and if it varies, when you actually get your medication
When your prescriptions should be refilled and picked up
All appointments: Doctors, MRI, colonoscopy, tests
When you had blood draws, and then update the calendar entry with the lab results

Beause there's simply to much to try and keep in your head! I have a special calendar specifically labeled HEALTH where I track all of this stuff. I keep my calendar online through a free service (most email accounts offer this), which even allows me to get notifications and reminders if I want.

Are there any other bits of health info you think should be kept on this calendar? Do you have your own tip to share? Please let me know in the comments!

Tune in to TLC Sunday 8/7c

2010-03-11T12:24:00.000-08:00

>> HELP! I'M TURNING INTO A GIANT - Sun at 8/7c <<
A heart-breaking look at individuals suffering with Acromegaly, a rare condition that causes the body to grow uncontrollably. These modern-day giants exhibit amazing bravery and determination to lead normal lives.

Tanya (31) -

Wayne's Full TV Segment

2010-03-01T14:08:00.000-08:00

Way to represent, Wayne! Fantastic job!

Celebrate Rare Disease Day

2010-02-28T05:50:00.000-08:00

This was published in the Buffalo News (my local paper) at: http://www.buffalonews.com/2010/02/28/972097/be-supportive-of-people-living.html

Below is my submitted article. They didn't change much, but I figured I would share both versions.

Honor Rare Disease Day; Someone you know may be

We are all around you, and you frequently don’t know it. We have appointments to see doctors with specialties you cannot pronounce, and have experience going for tests that no one wants to think about. We are the “winners” of life’s lottery in a way that no one would ever want to win. We are patients with a rare disease, and February 28th is our day to “celebrate”.

On the last day of the month, the world recognizes Rare Disease Day in honor of people living with rare, or orphan diseases. Patients with orphan diseases are not necessarily infectious or dangerous, we are merely alone. No ribbons, no support groups, and hardly a celebrity willing to lift a finger. So what qualifies as a rare disease? These are diseases that are considered to be life-threatening, or chronically debilitating. The disease I suffer with is a disease called Acromegaly. While most readers have never heard of this disease, its effects are very real to me and the people who love me. This is a disease without fame, but with dire, even fatal consequences if it goes untreated. The number of people diagnosed with Acromegaly are roughly 3 people per million. Not exactly cancer, so support is limited. Research is hard to fund, patient information is extremely limited, and emotional support for patients is virtually non-existent.

The problem for the medical companies is that research is not profitable when so few people may benefit from a new medication. I understand why this happens, but it doesn’t make treatment any more fun for the patients or their loved ones. Moreover, my insurance company is not thrilled that my medication costs $52,000 a year just for medication, and alternative prescriptions are actually more expensive.

The bigger problem for patients than the medical end is the emotional side of an orphan disease. I wasted a decade of my life telling doctors I did not feel well before I finally found the right doctor who diagnosed me. The reason it took so long is that the symptoms are severe, but cross over several areas of medical expertise. Since diagnosis, I have never met another Buffalonian with the disease, which can be very lonely, and nearly impossible to get advice from people traveling the same path. When I went online looking for information, all I could find out was stuff written for doctors, and the fact that it killed Andre the Giant. Now there is more support. I have actually made a lot of contacts and shared a great deal of information with my virtual friends on facebook and AcromegalyCommunity.com.

Rare diseases can be extremely lonely and scary for family members too. As frustrating as it is to be a patient without support, at least we know what we are dealing with; our friends and family only know what we tell them. Family may be afraid to ask questions of the patient, and they rarely have someone who can sympathize when their family member does not feel well.

If you have a friend or family member who has a disease you have never heard of, be supportive. Just because you have never heard of it does not make the symptoms any less real for them. If someone you care about tells you they have been diagnosed with something rare, please try to learn about it. It shows you care. If they need help, even if it is just a sympathetic ear, be there for them. They probably don’t know anyone else that has the disease to talk with, and your warmth means the world. While we may not always remember to say thank you, we definitely feel it.

Celebrate World Rare Disease Day. Someone you care about probably is.

Send good thoughts to Trys!

2010-02-08T14:44:00.000-08:00

Trys is going in for surgery tomorrow!

Best wishes for a successful tumor removal and speedy recovery!

Update 2/9/10: Sounds like the operation went well!

Sandosatin and Somatuline sales up 17% and 18.8%

2010-02-05T11:33:00.000-08:00

Regarding Novartis' Q4 2009 results, PharmaTimes reports, "Turnover of the acromegaly therapy Sandostatin (ocreotide) rose 17% to $316 million." In a separate article, PharmaTimes notes that "Ipsen’s Somatuline (lanreotide) range of drugs for acromegaly and neuroendocrine tumours was up 18.8% to 36.5 million euros."

What is causing the increase in both Sandostatin and Somatuline demand? I could understand if one went up and the other went down, but both are up! Either people are increasing their dose, or more and more people are getting prescribed these drugs. What other explanations could there be?

Is this further evidence to suggest that acromegaly and pituitary tumors are on the rise, as Ms Moge suggests?

Blog Updates

2010-01-24T21:38:00.000-08:00

Hey everyone. Ellen and I were able to meet for the first time today! It was my first time meeting someone with Acromegaly and it was a great experience. I felt like we were old friends since we'd already chatted online. And it was nice to share with each other, knowing that we've gone through similar experiences, and can truly understand each other in that way. She and her husband were so sweet and funny. And truthfully I never would've suspected she had Acromegaly if I'd seen her on the street. Meeting with Ellen also made me realize how remiss I've been in following up with people. I've noticed many of you haven't updated your blogs and I hope you'll take the time to post and let us know how you are. I hope everyone is doing ok!

Pesticides and Acromegaly?

2010-01-20T14:18:00.000-08:00

In a comment on the last post,

Starbucks Addict said...

On the finding causes front, I'm wondering if any of you may have been exposed to pesticides regularly? We moved to our new home in 2001. We had a major ant problem and I started having our home treated for pests regularly. They sprayed outside the home every few months starting in 2001, and a few times a year indoors for the first year or two. I started showing visible signs of the Acromegaly in 2003.

Thanks, Jenny, for the insight! I had heard about a cluster of people with acromegaly in India where the local doctors suspected pesticide poisoning:

A Village of Giants, by Jayita Bandyopadhyay

and upon further research found this additional article from the same author which was actually published earlier:

Here comes the desi Hulk

A select quote:

"These cases are very common in rural India where pesticide poisoning is rampant," said Dr Baldeep Khurana, a general physician."

Have you been exposed to pesticides? Please describe in the comments section! We need to gather more information because this merits a deeper investigation!

Acromegaly, Schmacromegaly!

2010-01-18T00:01:00.000-08:00

Happy New Year everyone!

I hope that 2010 is the best year ever for our health. I have some really big goals for this year, and I truly believe that if we work together we will accomplish them:

1) Raise awareness about acromegaly

2) Find the cause of acromegaly

3) Find the cure for acromegaly

My dream is that one day acromegaly will be completely eradicated. Seem impossible? IT IS POSSIBLE! Look a the way that learning about human nutritional needs eradicated scurvy. We just need a better understanding of this disease. WE CAN DO IT! IF WE DON'T DO IT, NO ONE ELSE WILL. No one is more invested in finding the cause of and the cure for acromegaly than us, the people who are living with it either personally or through a loved one.

So let's pull in all our energy, contacts, and resources to work together to make this happen! Ideas:

1) Raise Awareness (and promote early diagnosis):

Continue to support the work of people creating awareness on the internet, like Wayne at AcromegalyCommunity.org. Wayne, you are an inspiration!
Look for more news opportunities, like Almu's newspaper feature or Tanya Angus on the Today Show, and spread the word. I admire Almu and Tanya for speaking out publicly about such a personal issue.
Reach out to celebrities with acromegaly (Tony Robbins, perhaps? Professional wrestlers?) and encourage them to be spokespeople for the disease. Maybe the loved ones of celebrities who have passed away due to acromegaly would want to help as well.
Get acromegaly written into an episode of House MD (TV medical drama that focuses on diagnosis of rare diseases) or some other mainstream entertainment vehicle.
Create a flyer or business card with information about diagnosing acromegaly to people who might be in a good position to identify potential cases of acromegaly

2) Find the Cause (so future cases can be prevented):

Work together to find commonalities between us - we're rare so we need to connect the dots
Learn as much as possible about our disease and gain understanding of what's going on in our bodies
Promote research
Participate in research opportunities

3) Find the Cure (to be free from treatments):

Early diagnosis increases the likelihood of a successful and complete tumor resection, so this ties back in with raising awareness
Emphasize to our doctors that we are interested in a cure, not just treatment
Participate in clinical trials
Learn how how the health care industry works so that we can encourage them to help us
Do research and make connections. No one knows this disease better than we do - others have taken matters into their own hands, so can we!

(I haven't seen this yet but the trailer alone is inspiring)

(Lorenzo's Oil- I haven't watched the whole thing but the synopsis sounds like what I hope to accomplish with acromegaly)

This post is just to start the ideas flowing - come up with more and let me know what you're thinking about in the comments!

Side note- I am inspired by the work of Fran Drescher's work in the cancer community (Cancer Schmancer).

Anthony Robbins - A Giant?

2010-01-17T22:34:00.000-08:00

During my last post, I did a little research on Anthony Robbins, the motivational speaker who happens to have acromegaly. I am hoping that he will become a spokesperson for acromegaly, so that the disease would gain more recognition and ultimately, more resources for research towards a cure and better treatment.

According to this bio, "In 1994, a routine medical check revealed a tumor in Robbins' pituitary gland. Robbins explains in Personal Power that the tumor was actually an adenoma that had infarcted several years earlier. Due to the pressure of the adenoma on his pituitary gland, he had circulating levels of growth hormone several times higher than what would be normal for an adult his age. This had resulted in a subclinical manifestation of the disease known as acromegaly, which doctors told Robbins was responsible for his remarkable growth spurts as a teenager, as well as his large hands and feet. (He is 6 feet 7 inches tall, or 201 cm). After consulting with multiple physicians, Robbins decided not to have the adenoma resected, as it was not causing any clinical manifestations."

I find it interesting that he has TWO books with "Giant" in the title - Awaken the Giant Within, and Giant Steps.

On Page 448 of his book, Awaken the Giant Within, he promotes HGH! I cringe because he mentions it under the heading, "The Fountain of Youth."

The book was written in 1992, so I suppose that was before he was diagnosed. Anyway, has anyone ever met him or discussed his acromegaly further? I wonder how his diagnosis has changed his outlook on life and his priorities. I wonder what he was like before he found out about his tumor and what he's like now. I know that my diagnosis was one of the most life altering events in my life.

More on giants by Ms Moge over on her blog, Giant Bridges.

Human Growth Hormone in the News

2009-12-15T17:55:00.000-08:00

http://www.nytimes.com/2009/12/15/sports/15doctor.html?_r=2&pagewanted=print

Supposedly, this celebrity doctor has been prescribing and administering human growth hormone to his patients and he's been taking it himself.

I always feel conflicted when I read about HGH being used for "longevity" or anti-aging. I worry that people see this, get the wrong idea, and think HGH is this wonderful thing with no negative health repercussions. I rarely see mentions of acromegaly and the health effects of having too much HGH. On the other hand, I hope that with all this interest in HGH, more research will go into the study of it, which may inadvertently lead to advances in the treatment of acromegaly.

40 mg of Sandostatin every 4 weeks and Colonoscopy Prep

2009-12-09T14:50:00.000-08:00

Well, my heath insurance debacle continues. Turns out the insurance company denied my doctor's prescription for 30 mg of Sandostatin every 3 weeks because the drug is not labeled for that dosing. The insurance company would prefer that I have 40 mg of Sandostatin every 4 weeks. Since the delay of getting my medication shipped has been going on so long (I was overdue for my shot) I went in to the hospital to have the shot administered at the chemo center. Sandostatin doesn't come in a 40 mg dose, so they gave me 2 shots, 20 mg each, one on each side. We'll see how it goes. Is anyone else on this dose?

In other news, I am on a liquid diet today because I have colonoscopy scheduled for tomorrow. In case you didn't know already, acromegaly comes with an increased risk of colon polyps, which are dangerous, so regular colonoscopies are advised. The old recommendation was to have one every 5 years if you have acromegaly, but they* recently changed the recommendation to every 3 years, which means I'm now due!

I actually don't mind the colonoscopy so much because last time the colon cleansing process made my skin really clear, and I felt much more energetic afterwards. Also, the prep procedure seems easier this time than last time. I've been sipping my broths and juices all day and so far I'm not panicked with hunger. So much of hunger is psychological! In addition, this time there is a laxative involved which I don't recall previously. I haven't started drinking THE DRINK yet, so who knows what my attitude will be like in a few hours.

As with last year's colonoscopy, my dear brother will be accompanying me and taking me home after the procedure. I feel so lucky that my family is available to help me out! My brother took me to the hospital today to get my sando, and I was hanging on him while hobbling out of there because it's hard to walk after having the shot on both sides!

*I'm not sure who "they" are but that's what my endocrinologist told me

Other Symptoms?

2009-12-03T12:01:00.000-08:00

I just read this article about a professional fighter who may be abusing HGH:

http://bleacherreport.com/articles/297345-overeem-to-face-fedor-over-juiced-overrated-and-out-of-his-mind/show_full

Toward the end of the article they discuss the symptoms of acromegaly, and they included one I had never heard of before:

9. Thickening of the neck

Of course, they are referring to "artificial" acromegaly due to HGH abuse, not a pituitary tumor, but I was wondering if anyone else has noticed this personally. I definitely experience the majority of my muscle and joint pain in my neck and shoulders, but it's hard to tell if my neck actually looks thicker. I definitely feel like my shoulders tend to be tense and elevated (almost like I'm shrugging) unless I make a conscious effort to relax them.

Are there any other symptoms you believe are related to acromegaly, but you don't see listed as a symptom? Based on my own experience, I would add:

sensitivity to heat and cold
dryness of eyes and mucous membranes
discharge (oil?) from the aereola
overproduction of callouses
increased thirst and appetite

Let me know if you have anything that you think is related to acromegaly that doctors currently consider a symptom.

Why I'm switching back to the HMO

2009-12-03T10:05:00.000-08:00

(Caution! This is a rant where I'm just getting a lot of my frustrations towards my insurance company off my chest. I know I'm fortunate to have health insurance at all, but still things should be easier than this.)

I'm on hold right now with my pharmacy. I'm trying to get my next sandostatin shot set up, and it's so complicated.

Yesterday:

Call the pharmacy to order the sando.
Because sandostatin is considered a "specialty" drug, I have to be transferred to the specialty pharmacy.
There's no prescription on file, so I called my endocrinologist's office to have them fax the prescription in to the pharmacy

Elapsed time, half an hour

Today:

Call the company that provides the nurse that will inject the medication to schedule. They can't tell me when my appointment will be, they have to call me back to let me know what time they can do it.
Call the pharmacy back to check on the status of my order from yesterday.
The prescription was received, but now the insurance has to approve it.
Call the insurance company, they need the endocrinologist's office to call them to approve it
Call the endocrinologists office, left a message asking them to call the insurance company

Today's total elapsed time on the phone, 1 HOUR

The sandostatin order is still not complete, and if it isn't shipped today for delivery Friday, I will have to wait till Tuesday for delivery because they don't do Monday deliveries (no one can send it out on Sunday). I was supposed to have my injection yesterday but I've been traveling and I won't be home till Saturday night.

This kind of thing is typical for all my medical dealings. I am doing the phone tag rounds right now for my upcoming colonoscopy as well. In the past, this is what would happen:

Hospital sends me bill for full price of procedure/medication/whatever
I call hospital billing for explanation, they tell me it is because the insurance denied/did not respond to their requests
I call the insurance company to tell them that I'm being billed, and insurance should be covering it
The insurance company sends a request to my doctor's office for more information
Doctor's office did not receive/respond, so I have to get the forms from the insurance and fax it to my doctor's office myself
Hospital sends another bill showing that I still owe the full amount
I call the insurance company to ask about the status of the doctor's forms
The insurance company tells me that they did receive the completed forms, the system just hasn't been updated yet
They update the system and authorize payments to the hospital
Call hospital with the insurance company's payment confirmation numbers

Of course, it's not as straightforward as I've described above. There is usually some extra following up along the way. Imagine long hold times, phone trees (press 1 for ....), repeating the same information over and over (account numbers, security verification questions, contact info, etc). And for what? I still have a huge deductible and multiple co-pays that do not count toward

I miss things being easier at the HMO- everything was so integrated and I could even order my refills online, then just pick it up. No approvals and authorizations between the doctor, the insurance, and the pharmacy to juggle. I hear things are also better in countries with nationalized healthcare programs. FINGERS CROSSED for healthcare reform! Improve patient quality of life!

Update: I just got off the phone with the insurance authorization people and they got the information they needed from my doctor and now they are waiting for their medical review people to look at it. The pharmacy had told me earlier that my order had a "STAT" priority, but the insurance authorization people said that my review was on the normal timeline. It is now on the STAT review timeline. Elapsed time for today is now TWO HOURS!

To say something or not?

2009-11-19T19:06:00.001-08:00

I've always wondered if I should say something to strangers I see that exhibit signs of acromegaly. I have never actually said anything because I worry it might come across as rude, or it might be unnecessarily alarming, but this article is giving me second thoughts about holding my tongue:

http://www.guardian.co.uk/world/2009/oct/28/spanish-women-guardian-angel-disease

I'm curious, have any of you ever been approached by a stranger about your acromegaly, or have you ever approached a stranger (or friend or loved one, even) that you've suspected to have acromegaly? If so, how does one go about bringing it up?

What Helps? (Part 2)

2009-11-06T17:14:00.000-08:00

Remember the post a few months ago about little tips to help deal with acromegaly? I want to highlight a few tips that have come up since the original post.

1) One thing that seems to help ALL the symptoms is to AVOID STRESS. Everyone agrees that we should avoid stress, but how? Everyone has their own way to deal with it, and some are more constructive than others. Prayer, meditation, exercise, stretching, massage, proper sleep, therapy, change of environment, whatever works for you- just don't let stress build up! Stress has a real effect on your body, just like toxins from the environment do. I'm convinced there is a link between stress and acromegaly.

2) Become an advocate. Sometimes when I'm feeling down and a little sorry for myself, I find the best thing I can do to pull myself out the rut is to think of a way to help others (for example, I hope this blog helps others). You can share your experience, educate those around you, raise awareness, and provide support for others that are in need. I feel so much better if I can help just one person avoid unnecessary suffering. I firmly believe that discoveries about acromegaly are going to come from within our community, as a direct result of our own activities. Because our disease is so rare, we can't rely on the rest of the world to fix things for us. We have to work to make things better ourselves!

3) FIND FRIENDS. I don't know where I'd be right now without the support and insight of my fellow acromegaly bloggers. I still remember the first time I "met" someone with acromegaly (it was Jason, via email), and what a thrill it was to stop feeling alone, and to have my experience validated. I recently got to know someone locally with a chronic rare disease, and while his disease is not the same as acromegaly, we were able to share our experiences and give each other tips and encouragement (actually, talking to him is what inspired this post). Having someone who truly understands (not just imagines what it must be like) makes such a difference. If you haven't yet checked out some of the support groups (see the sidebar to the right), you should!

Clinical Trial Reject

2009-11-02T15:39:00.000-08:00

I just got of the phone with my endocrinologist- my bloodwork from last week came in and my IGF-1 and Growth Hormone levels are too high for me to qualify for the clinical trial. I have to admit, I'm pretty disappointed. I was really excited about trying out the new treatment, because I really thought it would make my life so much better - I would almost be like a normal person, because I wouldn't have to think about my disease so often. Both the endo and I knew that the current treatment (30 mg Sandostatin /4 weeks) wasn't quite cutting it, but I was hopeful that the experimental thing would work better. Now I don't even have the opportunity to try it out.

The morning I went to go in for my blood draw, I was running late, I had just finished working over a really stressful weekend, and I went to the wrong room in the hospital and couldn't find the nurse I was supposed to meet. I wonder if all of that stress elevated my IGF-1 and Growth Hormone levels.

Acromegaly, Aging, and Loss

2009-10-28T07:24:00.000-07:00

I was reading one of my favorite advice columns the other day, "Since you asked," when I found a letter that struck a resonant chord with me. The letter was written by someone who is concerned about turning 50, facing a rare disease, and basically realizing that he's not 20 anymore. I'm not that close to being 50 years old, but reading the letter reminded me of dealing with acromegaly because for me it has represented the loss of a more carefree and energetic time.

I'm never sure if I'm feeling a certain way (tired, achy joints) just because of the natural aging process, or if it's a symptom of acromegaly. I think about the misinformed people who abuse human growth hormone hoping it will act as a fountain of youth and I shake my head because for me I feel like it has only aged me.

I don't want to give away the whole article, but the advice columnist wrote, "You also sound like you are grieving for your youth," which really struck home. When I get sad about acromegaly, I am grieving for the life I had before acromegaly.

Anyway, I don't always feel like this, but it certainly captured the essence of what I think about when I'm feeling down. I loved the columnist's advice, but I was wondering if you, my fellow acromegaly compadres, had any advice of your own for facing similar times. Please let me know what you think!

http://www.salon.com/life/since_you_asked/2009/10/06/turning_50/index.html

"There is a clear need for better treatments for this niche and difficult to treat disease"

2009-10-14T21:19:00.001-07:00

Here's a little ray of hope for those of us who are interested in new treatments becoming available - there's a new drug being developed called ATL1103 that just passed some level of development, and will probably start a human clinical trial in 2010. Sounds promising!

ATL1103 is a second-generation antisense drug that targets the growth hormone receptor (GHR). By blocking the action of GHR, ATL1103 inhibits production of insulin-like growth factor -1 (IGF-I) from the liver thereby reducing its levels in the blood. GHR is a clinically validated therapeutic target in the growth disorder acromegaly (excessive growth of parts of the body and organs including the liver, kidney and heart) where the goal of treatment is to normalise IGF-1 levels in the blood. There is a clear need for better treatments for this niche and difficult to treat disease with the size of this market nearing US$1Billion per annum in drug sales.

-From some press release, via the RSS news feed "Acromegaly News" in the sidebar

Getting There—to the End of My Journey—This Time Around

2009-10-02T01:02:00.000-07:00

Please see my new post on my recent transphenoidal surgery to remove a residual pituitary tumor. I initially posted it here but thought it wiser to just share this link: http://acromegalicprincess.blogspot.com/2009/10/getting-thereto-end-of-my-journeythis.html. Thanks. There is a cure for acromegaly as excision of the adenoma can result in remission for some of us. God bless us all.

Happiness and Acromegaly

2009-09-22T14:10:00.000-07:00

This was a piece written by Ayaka, one of my friends in the Acromegaly Community family.

People around me often say, “You’re always smiling and looking really happy.” In fact, I always try to think about good things, so that must be why I smile all the time. Not only that, I also think it is wonderful for me to just being in this world alive and to live a normal life, so I feel quite happy. However, my smile is possibly a byproduct of my so-called “intractable disease” in Japanese medical system. My smile is my greatest strength. By smiling, I am also trying to repay the kindness of people who have supported me in so many ways, and if possible, I wish I can give people some hope through my smile.

My disease is a chronic illness, called “acromegaly.” Acromegaly is incurable. It is not associated with lifestyle, and the cause of this disease is unknown. Approximately 4-6 out of 1 million are diagnosed with this disease each year, so it is a very rare disease.

Acromegaly is a medical condition where you have too much growth hormone in your body. It is due to a growth hormone producing tumor on your pituitary, which is located under the hypothalamus. I had a tumor, measured about 7cm on my pituitary. I was twenty-four when I was diagnosed. This big tumor compressed my optic nerves, so I lost peripheral vision. The first surgery of my life was a neurosurgery.

At that point, I had not yet experienced any serious illness, so I did not know that the surgery was merely the beginning of the life with a medical condition. The surgery itself was a great success, but my life after the operation became pretty difficult.

At first, I absolutely hated needles, and I was scared of and hated the monthly blood tests and intramuscular injections. Particularly, the needle for the IM injection was 19 gauze and 1.5 inches long (about 3.81cm). I would felt, “I can’t stand the injections with such a big needle every single month for rest of my life. It’s impossible…” The side-effects of this medication include but not limited to the pain from the injection, fatigue, abdominal pain, diarrhea, anorexia (loss of appetite), depression, light-headedness, and headache. What is more, one dose of this medication costs ¥60,000-70,000 JPN (approximately $600-700 USD). I need to receive one dose each month. In other words, my monthly medical expense is at least ¥60,000-70,000. “I can’t believe the shot is painful, side-effects are bad, and it is so expensive! How can I seriously live with this disease?” I questioned the necessity of this medication because of all the downside of it, but I found that I would die by ten years earlier if I would not receive the medication. In addition, I was most likely to get complications, such as colon cancer, cardiomegaly, or partial blindness. To prevent these things, I need to get the expensive, painful, and harsh injections.

Complications of acromegaly are many. In my case, some of the complications are pre-diabetes, chronic headache, chronic fatigue, and goiter. As you can see, none of these medical conditions are visible. It’s hard to have just one of these conditions, but if you have all of them, it is even harder. I can still live normally with all these conditions, like my doctors say. However, few people know that being “normal” is more challenging than it seems, so I often feel that I am not understood.

Have you ever felt profoundly tired when you caught bad cold? Chronic fatigue is like you feel that way all the time. Have you ever had a bad hangover headache? My headache comes twice or three times a month usually, and I cannot even stay awake with the pain. Imagine living in such body every single day. For me, living “normally” itself can be hard. Even so, fortunately or unfortunately, I look completely normal, so not many people understand how I really feel. Just to note, however, that not all the people with acromegaly have exactly the same symptoms that I have. Some patients can enjoy intense sports while the other cannot walk easily with a lot of complications.

I have now talked about the challenge to live with acromegaly, but it is not only hardships that I have experienced while I live with multiple chronic illnesses. It is true that I need to deal with a lot of difficulties that I would not have to deal with if I were strong and healthy. Sometimes, I do feel very discouraged, but it does not mean that I feel unhappy. I have gained a lot of important things through my illnesses, and I even feel blessed quite often. First, I became someone who can feel others’ pain. Second, I met a lot of wonderful people through my medical conditions, I was touched by their kindness, and I made precious friends who are very supportive and understanding.

Third, I started being more aware of the limitation of our given time (=life) and how precious it is. In such a limited time, what really matters is how we can make our lives the most meaningful. I had known this in head, but I had not understood by heart until the diagnosis. Now, I started thinking about our happiness all the time. If we cannot feel happy in this limited time, how vain our lives are? When I question myself like this, I became more positive, and made up my mind: “I must become happy no matter what medical conditions I have. I’m the one who’s in charge of making myself happy and cheerful.”

Although I am trying to maintain positive attitude, I sometimes feel depressed. Now and then, I cursed my life, or I thought I would rather die. Each time I was in such a negative mood, however, I thought of all the people who have saved my life and supported me all the way, and I felt warm in my heart. I do not want to give up living so easily, but rather, I want to live as hard as possible with my doctors, family, friends, peers, and their love and support. I think I went to the lowest point, feeling hopeless, and because of that experience, I became much stronger. My smile is the symbol of my strength.

I came this far, but until I made my way up here, there were a lot of hardships, and I am still in this battle. Although I continue facing challenges after challenges, I decided not to lose hopes. I am supported by many people, including my primary physician, Prof. Hizuka at Tokyo Women’s Medical University Hospital / Endocrinology Center. I want to repay all the kindness that they gave me when I needed the most, but it is just too tremendous. I finally came to the conclusion that what I can do to repay is my smile/happiness, and to pass on their good deeds to others. I may not be able to smile like I am now if I did not have to live with chronic medical conditions, so I am convinced that my whole experience with acromegaly is a blessing. I want to give some hopes to as many people as possible through my smile. This is my greatest wish for now, and I do believe it is one of the most important works I can do.

Clinical Trial and Ethnography

2009-09-21T23:31:00.000-07:00

I had a meeting with the main research nurse who is running the clinical trial. I'm going to do it (assuming I qualify, I need to have some blood draws performed). Also, I scheduled a meeting with the ethnography people- they're coming over to talk October 6!

If anyone else is interested in doing either (the clinical trial is going on across the country), let me know and I can pass along the info.

Letter to congress about healthcare

2009-09-08T17:17:00.000-07:00

I wrote the following but the New York Times passed. If you like the message, I encourage my US friends to send it to their legislators (www.senate.gov/general/contact_information/senators_cfm.cfm or http://www.house.gov/). Remember, our president is trying to really steer the future of healthcare in the USA.

Studying healthcare politics from the outside looking in has been absolutely surreal. As a 30-something Acromegaly patient and advocate, I am lucky to have a job with good insurance. Without insurance, I would spend more than $50,000 per year just on my medication alone, so it is fair to say that I have an active interest in the results of this fight. What I can’t decide is which side to root for. It seems like the political thinkers have divided into two camps with a huge chasm in between. The real issue for me is that I don’t think either side is totally trustworthy.

On one side of healthcare you have the national government. Let’s be realistic. Every method of federal healthcare currently available has is flirting with financial disaster. Moreover, federal insurance programs have left physicians floating in a sea of bureaucracy, paperwork, rules, and regulations. Politicians use federal healthcare to buy votes from the old and infirmed, using it as both a carrot and a stick.

On the other side you have private health care. Here you have bureaucracies that are equally overwhelming to the doctors, but the financial reality is far darker than ruin; it is greed. Insurance companies are looking for any reason to not cover medical expenses submitted by the very patients they actively recruit. Patients pay hefty premiums for years, never using their insurance for anything more than the occasional flu shot or random Emergency Room visit. But they keep paying just in case, hoping it will be there if they need it. Sadly, that is when insurance companies find a way to jack up their insurance rates or simply drop the patient from their coverage. And if they are lucky enough to keep their insurance, too many patients find that the company is seemingly more willing to spend money deflecting their claim than paying the bill. Moreover, healthcare companies happily pay disgusting sums of money to law firms-worth of lawyers, executives receiving 8-figure salaries, and lobbyists throwing influence all over Washington, DC. Why? All of this is in hopes of protecting themselves from having to set a precedent by paying an extra dollar for grandma’s aspirin in the nursing home.

So what’s our legislators to do? Force everybody onto national healthcare? Keep the status quo? I think there needs to be a third option? A more real option that will hopefully help everybody. The House and Senate need to create an advisory panel made up of legislators from BOTH sides of the aisle, medical leaders within insurance industries from both the government and private healthcare, medical practitioners, and especially patients familiar with healthcare issues. They need to meet seriously and come up with real strategies and options that provides quality healthcare to the weakest of our society without punishing private industry or the wealthy. This can be done if our leadership is willing to do it.

Wayne Brown
Founder AcromegalyCommunity.com

Muscle Aches and Repetitive Actions?

2009-09-04T22:36:00.000-07:00

I've been wondering if these things are linked with Acromegaly. I never used to have muscle aches before and it seems that my muscles are very sensitive to repetitive actions now. I don't read as often as I used to because I think it was causing my muscles in my shoulder and neck to tense up, resulting in headaches. I realized my headaches were always on the left side, and I always read by holding the book with my left hand. I'm a very avid reader so I could read for hours at a time, day after day. Since I've stopped reading as much I notice my muscles don't hurt as much, and I have headaches less often. Maybe I'm grasping at straws again. Just wondering if anyone else can attribute their muscle aches/headaches to repetitive actions, that wouldn't cause problems in someone without Acromegaly.

Wayne, Self Injecting Somatuline Autogel

2009-08-31T18:10:00.000-07:00

Wayne put together this fantastic video showing how he self injects Somatuline Autogel! I really love that we get to see him "in person" in this video and he's so calm and straightforward about a potentially intimidating process!

"Social Study on Acromegalic Experience"

2009-08-24T09:05:00.000-07:00

Has anyone else gotten an email about participating in a "Social Study on Acromegalic Experience," which involves having an ethnography done?

I just got one this morning and was wondering if anyone else has more details.

What Helps?

2009-08-08T10:50:00.001-07:00

I was noticing all the little things I do to deal with my acromegaly symptoms, and I thought I'd share even though most of them are small actions. Do the rest of you have strategies on dealing with symptoms that you can share? Please comment on what helps you! Of course, this is on top of doing everything the doc says (meds, etc).

Swelling in legs and feet:

Sleep with legs elevated on pillows
Avoid salty/packaged foods
Drink lots of water
Loose a little weight
Socks made for diabetic people
Move around as much as possible, don't sit or stand in one place too long

Aching in joints:

Heating pad
Avoid dampness
Massage (loosens the muscles around joints that are tight)
Avoid stress

Headaches:

Traction - basically I lay in bed with the back of my head hanging off the edge, so gravity lengthens my neck
Don't sleep too much
Exercise
Massage
Avoid stress

Digestive irregularity (due to medication)

Diet of mostly fresh foods
High fiber diet
Drink lots of water

Acne:

Avoid sugary foods
Exfoliate

Tiredness:

Eat as much fresh food as possible (avoiding "heavy" foods, sugary foods, processed foods, etc)
Exercise (this one is hard, esp. when you're already tired, but it really helps!)
Fun activities (helps you forget you're tired!)

I'd like to point out that low sodium and high fiber diets also help prevent two diseases that people with acromegaly need to be careful about: heart disease and colon cancer. I have found that the more I do for my health in general (exercise, eat right, rest, avoid stress) helps my acromegaly symptoms.

CLINICAL TRIAL!!!

2009-08-03T16:56:00.000-07:00

I just got off the phone with my endo- he called to ask if I would be interested in participating in a study on a new delivery method of Sandostatin (well, it's basically the same stuff, but different name) that would last for 6 months! Instead of a shot, it would be small pellet that is implanted just under the skin on the arm (they apply novocain so supposedly it won't hurt). I vaguely remember reading about something like this a while back. Once every 6 months!? That sounds so great! I might almost feel like a normal human being free from the tangles of waiting rooms, chemo centers (that's where they administer my shot sometimes), exorbitant parking fees at the hospital, random nurses (some are wonderful, some don't follow the directions and stress me out), recurring copays, or when I have the shot at home, needles, prescription refills, pharmacies, and boxes requiring constant refrigeration!

I'm not 100% sure I'm going to go through with this, but I'm very interested- what do all of you think?

Anyway, I asked him if It was OK to share this information with all of you, and he was very open to the idea. If you are in the Northern California area and you are interested in finding out more, please email me and I'll be happy to pass along my endo's contact info! From what I've heard, they're only accepting people during the month of September, and you have to have your levels currently "controlled" (within 20% of normal) on a dose of Sandostatin that you've maintained for a minimum of 3 months.

Clear the Path, Life is Waiting...

2009-07-30T19:50:00.000-07:00

I had a very interesting weekend dealing with friends and their psychological limitations. Now I am in no way a psychologist, or even a social worker. But as a fellow acromegalic and high school teacher, I feel I am somewhat of an expert in how people can be cruel to those who look “different.”

One friend was acromegalic, and one was completely healthy. My friend who was acromegalic was invited to a party where they had not seen people since before their diagnosis. My friend who is in perfect health was afraid to attend a gym because they may not be as strong as their contemporaries. While these people are on different life paths, the similarities in their reasoning were striking to me. Both friends were primarily worried about what other people would say if they chose to participate in their individual social activities. While I am sympathetic to their fears, my own experiences made me feel badly that they were voluntarily standing in their own way.

Before I was diagnosed with acromegaly, I was tremendously obese, I was 6’3” and weighing in at just under 350 pounds. My shoes were size 16, and my hands BARELY fit into XXXXXL gloves! As to the gym, when I did try to go to the gym, I was barely able to do anything without my chest hurting. In hindsight, it was probably the tumor, but at the time I heard the whispers when I couldn’t hack it at the gym(which may or may not have been limited to my own brain): how do I expect to get my heart healthy if I don’t exercise because its too tiring. What a loop! If I go to the gym, I feel lousy and fear people are ridiculing my workout ability. If I don’t go to the gym, I feel lousy and fear that people are ridiculing my weight.

After diagnosis and treatment, I lost a good deal of weight for about six months before it started creeping back up. I was at a crossroads. I didn’t want to gain the weight back, but how I feared what others were saying. So I started to just watch my diet. Eventually that weight loss plateaued and I needed to either accept where I was stuck, or risk ridicule. I finally decided to take the plunge, laughing be damned. While I felt like everybody was looking and laughing at me, eventually I noticed that most people were busy working out, with no regard to anyone else in the gym. Most people there were either they were in love with their own look, or were worried about the same thing I was: ridicule from fellow members. After that epiphany, I was able to go work out at my own pace without fear of ridicule. And yes, I did see people laughing at me from time to time, but by then I was far enough into my routine that I just didn’t care. Parenthetically, this morning I was at the gym and noticed a guy doing cardio who was tremendously overweight. My first thought was, good for him! He took the first step!

So what does all this have to do with Acromegaly? Acro’s are typically very self-conscious of how we look. “Chris” chose not to go to the party because of a fear of ridicule. This is a shame because Chris is a very kind and generous person and I am sure that the party was poorer for Chris’ absence. Moreover, I am confident everyone else going to the party was afraid of something embarrassing including (choose any or all): weight loss/gain, job/career status, clothing label, paycheck, kids, house, life goal, addictions, fears, etc. We don’t need to apologize for our own inadequacies because most people are too busy focusing on their own shortcomings to notice what we fear most about ourselves.

My friends, I am both happy and sad to announce that no one ever really leaves behind the pettiness of high school. It is sadly unavoidable that people will always judge other people; and I am sure that at one time or another we are all guilty of it. The trick is to not let other people’s value of you paralyze your life. When we choose to not be social because of fears over that which we cannot control, we stay home and trap ourselves inside our own brains with our own endless chants of inadequacy, ensuring those negatively skewed self-evaluations will set in mental concrete. We have an obligation to those we love, and those who love us, to battle those insecurities and live every moment to the best of our abilities.

I admit that some days are better than others and when the acro is running your body, it can be tough to face the world. On sick days you may need to take it easy, and that is fine. But on those other days when we are healthy but may be feeling a little crummy about ourselves, I feel that those are the days we need to work extra hard to face the world. Worst-case scenario, we go out and have just as bad a time as we feared we would. But in all likelihood, if you are social, something good will happen while you are out. Even just faking it can change your mood for the better… you will have far more fun than locking yourself in the house. Who knows, maybe you go out and have a wonderful time and make new wonderful memories.

We only have one shot at this life. We need to make sure that we do waste a single day because of a fear that someone you don’t know may disapprove of you. Go have a great life, and if someone tries to stand in your way, walk around them and keep going!

Are you alone? No!

2009-07-17T11:22:00.000-07:00

So you have been diagnosed with Acromegaly. If you are anything like I was, a small amount of congratulations is deserved. I know that I was complaining for almost ten years about how lousy I felt, and finally being diagnosed offered a certain modicum of relief. However, if you were more like me your next question was, what the hell is that?!

Welcome to one of the largest tiny groups in the world. There are no stickers, no fundraiser cut outs of scrap paper sold at fast food restaurants, no ribbons, and most critically no personal support groups to help you after diagnosis. Most acromegalics could go their entire lives without ever bumping into another soul who can empathize with what you are feeling. That was the worst part for me. One night I was sitting alone in the darkness, trapped with my thoughts. Am I really alone with this? Are the medication side effects normal? Why do I still have days when I’m tired? How do I explain to a date that I have a tumor in my head? And of course, the ultimate… am I going to die? When I was diagnosed, I had a number of family members dealing with ‘high profile’ diseases, so I felt guilty if I ever complained that I felt horribly. So what is a person to do? Well I decided to look for support. I started by going to a support group for people with brain tumors. While everyone was very nice, it was very clear that this was not a good fit since everyone else had cancer. When I looked for groups that helped people with just ‘average’ tumors, I found none. So I decided to do the next-best thing and lift the metaphorical window to scream out at the rest of the world. “Hey, is there anybody out there?” While it took a while for anyone to answer back, it did happen. And now I am proud to have friends around the world.

And where can you scream that the whole world can hear you? Well the internet of course! While acromegaly is an ‘orphan’ disease, there are still a number of us orphans all over the world. While my quest started slowly with the creation of a group in MySpace, that eventually evolved to a group on Facebook. A few years later as I became more actively involved in the Acromegaly community, I eventually made the full commitment of patient advocacy and created a free-standing website called AcromegalyCommunity.com. When I created this website, it was my dream that this website should offer support for all people touched by the disease regardless of education level or experience with the disease. There is something for everyone.

Acromegaly can be a very lonely illness. I know this beyond a shadow of a doubt. But the thing about loneliness is that you can minimize that feeling if you can introduce yourself to people who are experiencing similar issues. While it would be nice to feel the warm embrace of another acromegalic, you may be the only one in your town. Then again, you might not. But the odds of actually meeting someone else is probably small.

The bottom line is that you are not alone if you choose not to be. I love our gang. I know for certain that our friends span at least three different continents, and dozens of different countries. But what really makes everyone so great is that we all come from our own backgrounds and experiences, but we all have that one same horrible thing in common.

So I would like to welcome you to our community. Everyone is welcome. I would love to hear your feedback. What do you like? What would you like to know?

Join us at AcromegalyCommunity.com and be with people like you.

Exciting breakthrough

2009-07-08T05:55:00.000-07:00

So, I was reading, drinking a morning cup of coffee and ran across this article and just had to share this here. I am very excited about this discovery.

New Fluorescent Silicon Nanoparticles Discovered

Read article here: http://www.laboratoryequipment.com/news-fluorescent-silicon-nanoparticles-070109.aspx

I see this as an exciting promise for the future of all acromegaly patients. The implications of this technology is immense (in my opinion). Can you imagine where upon diagnoses of having a pituitary tumor nanoparticles mapping out that patients endocrine system and identifying exactly all glandular functions. WOW!!!!! There is hope..... Answers/help await just around the corner.
as always just my opinion,
moge

Who the heck is MsMoge?????

2009-07-06T17:49:00.000-07:00

Ms Moge is owned by Shadow cat pictured in my icon. He bites the tops of my feet when he wants something. A feral cat when he first came to be with us and now rules the house (well he thinks he does)

I unwillingly landed in the position of researcher and supporter for acromegaly patients when my son was diagnosed with a macroadenoma in 1993. Phew seems like yesterday and a lifetime ago all at the same time.

My son went through the traditional treatment options, 2 transsphenodial surgeries, gamma knife and then all the hormone replacements. egads.......... this is a frickin nightmare at times.

My son is a giant now 7', we are preparing to make a video of his life and diagnosis. Absolutely we will share this with Acromegaly Bloggers once we get it done.

To some degree I have evolved my research into giantism born from pituitary tumors.

When he was first diagnosed I remember contacting NORD (National Organization for Rare Diseases) In a week or so I got some literature in the mail. Acromegaly was briefly defined and at that time giantism was not even listed. Leave it to my son to get a disease so rare even NORD didn't have it listed. Looking back the thinking from the medical community was giantism was a disease of the past. Not something you would encounter in modern medicine. A child or teen diagnosed with a p. tumor would be treated thus preventing giantism. Good Plan if it worked. We now know a few stubborn tumors refuse to be treated absolutely.

If I had a nickel for every minute spent waiting in a waiting room I'd be filthy rich.

My son is now 34 and fully supports my going public about his disease and his life. It's time we share what we have learned and also learn from others.

As for me I call myself a giantologist. I have to be a trivia master on the acrogiants throughout the world. The needs of this group of individuals is extreme. I'm working on finding ways to reach out to them and share resources and research. Everything from socks to tops is extreme and hard to find. In some areas of the world, I honestly don't know how they even live. Extraordinary lives led by extraordinary people. I will be blogging on some of these people from time to time.

Well I gotta stop somewhere, I have a problem with blabbing on and on....... I hope my contributions to acromegaly bloggers from time to time helps the acromegaly community in some small way.

Best Regards,
Ms Moge

purging other wise known as Patient dumping by health insurers

2009-07-03T08:52:00.000-07:00

Whistleblower Wendel Potter testifies before the Senate on how Cigna Insurance would "purge". He explaines some of the techniques employed in this practice. You can read about this story here. http://www.cnn.com/2009/US/07/02/insurance.purging/ Thank God Wendel came forward I pray more people find the strength to come forward. It is this practice by many if not all or 97% of health insurance providers that has significantly contributed to our nations health care and economic calamities. In America we cannot fix the health care crises if we do not fix this practice of patient dumping. If you are diagnosed with a catastropic illness and privately insured you are immediately thrust into battle to save your life or save your quality of life. You are also at war with a building full of lawyers and experts poised to fight you. You find yourself at war with an agency who sold you a gill of good prominising to be there for you if you ever have a health crises. Beware!!! If you are diagnosed with a catastrophic illness like Acromegaly, most insurers will stop at nothing to find reason to dump you. Now that patient will be on government insurance i.e. Medicade/Medicare. DUH!!! Do you have any idea how damaging this practice is in a patients best and most efficient recovery? The added costs of treatments, which eventually does have to be paid is and has been born by the taxpayer.
Time and Time again I hear from other patients telling me they were privately insured.

If found guilty of this practice those executives need to be prosecuted and punished. Madoff needs a few friends at his new address.

It's just my opinon ......
MsMoge

Bob and Tanya

2009-06-23T16:21:00.000-07:00

I do not know how long this link will be active. It is from MSNBC, prime news coverage on the story of Tanya Angus who has been hit VERY hard by acromegaly. She appears here on the Today Show with her story (includes video) accompanied by Bob Knutzen. Bob is the guy that has been helping me with my case with the VA. A very hard-charging guy with many contacts with doctors, specialists, and the military. Anyway, here is the link:

http://today.msnbc.msn.com/id/31502540/?GT1=43001

Update: Another article about Tanya here:

http://www.incrediblefeatures.com/story/?p=3456479

Seeking post-surgery options

2009-06-06T05:02:00.000-07:00

Hello! Just wanted to give a quick update. My IGF-1 has been rising steadily overt the last 2 years post-surgery. Last month, it's risen to my record high of 516. Ironically, it was normal (214 ng/ml) a day before the surgery.

I am scheduled to consult with Dr. Peter Eng, an endocrinologist, who practices in Mount Elizabeth Medical Centre in Singapore. I have very limited options here in Manila in terms of medication, hence, the reason why I'm seeking treatment abroad.

Comments/suggestions are most welcome! I'm flying to Singapore tomorrow to have my bloodwork repeated, and undergo my follow-up MRI there.

I just have one objective--to arrest my IGF-1, and hopefully get that elusive cure, if not, then at least the right management for my case.

Patients like me?

2009-06-02T17:43:00.000-07:00

Hi Folks!

"Do you have a life-changing condition? Learn from the real-world expereinces of other patients like you."

That's the pitch from patientslikeme.com, a website that lets you answer questions to create a health profile, then find others whith similar conditions to compare treatments, progress, etc. Kind of like what we are already doing here, except much more organized! Patientslikeme.com was created as a response to ALS, but it now covers several more "Disease Communities," including some rare diseases. However, I don't see acromegaly on there, and I want to! I have been thinking of adding some kind of acromegaly meme-style profile questionnaire so we give a quick picture of where we are at with our disease and treatment. It would also be a great way for new people to introduce themselves. Maybe I'll work on that....

In the mean time, I encourage all of you to click on this link to REQUEST A COMMUNITY. According to them, they have a really good no-spam policy, and all they ask is your email address and the what you're interested in (acromegaly, duh!).

really good video here

2009-05-31T18:48:00.000-07:00

Found this on the net. Really good info on the disease.
http://www.healthline.com/hlvideo/acromegaly-the-growth-disease

VA support

2009-05-11T16:37:00.000-07:00

I thought I would share some information for military people who may have acromegaly. I had brain surgery in November using the endoscopic method. Everything came out fine and the VA paid for everything and did a great job with all the supporting tests before surgery. After surgery, great too as I am now on lanreotide (somatuline depot injections). Medically speaking everything is great and the system works just fine. On the other side of the fence however, my VA claim is encountering vast opposition so please ensure that when you're in you report every thing, even things you may think are meaningless at the time, and have them documented. Because once you're out they will attempt to do everything in their power to avoid fulfilling the contract this nation made with you when you joined. Sad, but true.

Endo Buys Indevus

2009-04-07T16:57:00.000-07:00

Here's another bit of news from the news feed:

(A drug manufacturer that produces an acromegaly medication has been purchased by another.)

Endo's acquisition of Indevus has shifted the firm's attention to other specialty markets, such as neurology, endocrinology, and oncology ... Endo is also pursuing the development of ... its octreotide implant, which treats a rare hormonal disorder known as acromegaly.

I think my endocrinologist mentioned something like this at my last appointment! Instead of having to go in every 4 weeks for Sandotatin or Somatuline, it would be active for 6 months. He thought the project was being shelved, but if this article is accurate, then it sounds like they will continue working on developing it! Having to go in for medication only 2x a year sounds great, as right now every 4 weeks can be a bit of a hassle.

via http://www.morningstar.ca/globalhome/industry/news.asp?articleid=286008

Clinical Trials!

2009-04-07T16:54:00.000-07:00

Hello Dearest Acromegaly Friends,

Have any of you considered/participated in a clinical trial? I was surprised to see how many trials for acromegaly were listed!

Check it out for yourself at:

http://clinicaltrials.gov/ct2/results?term=acromegaly

The Kanzius Method?

2009-03-22T18:52:00.000-07:00

Hi Folks!

How many of you read the Acromegaly News over in the sidebar? I take a look at it from time to time, and I found one of the current articles up there to be particularly exciting - It talks about the the Kanzius Method of treating pediatric brain cancer, which may be one day applied to pituitary tumors! Very interesting idea, and I hope there is funding and support for more research! Here's the article in the news bar:

http://www.news-press.com/article/20090319/OPINION/903190319/1015

It seems the person who invented this method passed away recently (John Kanzius, R. I. P.) but his legacy is quite profund. I read his obituary and discovered that he is quite a remarkable person- he seems quite brilliant and accomplished despite never earning a college degree. I encourage you to take a look at his obituary for yourself!

Anyway, the message of this post is to remind people that there is progress in the treatment of acromegaly!

Where are all the support groups?

2009-02-20T22:19:00.001-08:00

I was checking out one of the support forums, AcromegalySupport.com that we have a link to (on the right sidebar) and it seems like most of the activity on that site happened back in 2007. The most recent post, from Jan 28, 2009 reads:

Anybody still check here? I sure do miss this forum... Best of the lot, in it's day. I'd love to resurrect its primacy and valuable resource of friends and contributors.

-Jeff

I tried to post a response (and point people to this blog!) but my account request was never approved. I even emailed the administrator but I never got a response. If any of you are registered members over there, please let people know about this blog and also tell the admin to allow new members!

I tried looking at MSN Acromegaly Groups as well, but the page reads "The MSN Groups service will close in February 2009," so there goes another online support group.

The MySpace Acromegaly Support Group seems to be doing ok, with a new topic every couple of months or so. I found more activity on Facebook, with an Acromegaly Support, a Pitutary Tumor Awareness, and a Acromegaly Awareness group! I haven't had a chance to go through all the discussion boards, but there are over 100 members in their Acromegaly Support Group! Pretty impressive.

Does anyone else have recommendations for more online support groups? Please let me know about them in the comments and I will update our sidebar to include all the new findings.

Of course, my fellow Acromegaly Bloggers will always have a special place in my heart. You have been the best support for me. I really love how following people's blogs has allowed me to get to know people as individuals. I also like how in people's blogs, acromegaly has context, like I can see how it fits into the bigger picture of living life (family, moving, graduating, career, etc). Remembering that life goes on despite having acromegaly has helped me to stay positive. Thanks to all my fellow Acromegaly Bloggers!

Hello Paul!

2009-02-17T18:28:00.001-08:00

We have another acromegaly blogger on the radar! Paul just had his surgery less than a week ago, and he just started a new blog:

http://acromegalywithmrpaul.blogspot.com/

Welcome, Paul! We're looking forward to getting to know you!

Some good news to share

2009-02-13T10:55:00.001-08:00

Hello fellow Acromegaly Bloggers!

Just thought that someone out there looking for encouragement might be happy to hear that my Humphrey Visual Field test I took yesterday turned out great! I went from pretty severe loss of peripheral vision in July 2005 (that's how I was initially diagnosed) to completely normal field of vision today.

I didn't get the official word from the neuro-opthamologist yet, but I have an appointment with the her next week to discuss the results and check some other things (they usually take pictures of my retinas).

Of course, if you think you have visual field loss you should get it checked out by a real doctor, but in the meantime I found this cool website that offers a test that seems similar to the one I took yesterday: testvision.org

Welcome, Julie!

2009-02-03T17:44:00.000-08:00

Thanks to Alecia for pointing out a new acromegaly blogger- Julie in Canada!

Check out her blog with a great title: acromegalyandme.blogspot.com

(I've also added her to our growing list of fellow bloggers!)

Today's Checkup

2009-02-02T12:37:00.000-08:00

Dear Readers,

This is a little late, but Happy New Year! I hope everyone's health will improve in 2009. With the New Year my medical benefits have changed, and I am back to seeing my endocrinologist the local university- let's call him Dr. K. I talked to him for a long time, catching up on all that has happened since the last time he managed my care, and I asked him lots of questions. Since I think it is interesting to get the opinions of different doctors, I thought you might be interested in some of the topics we discussed. Please remember that I did not write anything down during my appointment, so this is based on my sometimes-skewed memory alone, and I may have misunderstood some of the things he told me. Either way, if you have discussed any of these topics with your doctor, I would be interested in reading what your doctor has had to say in the comments!

This is going to be a long post, so you may want to grab a cup of tea and find a comfy chair before you start reading!

Switching Dosage

This might be a little confusing so I'll use parenthesis to define different doses: Last year I went from (20 mg of Sandostatin every 4 weeks) to (20 mg of Sandostatin every 3 weeks) to (30 mg of Sandostatin every 4 weeks). I still feel a little symptomatic by the last week, so we may switch to (30 mg of Sandostatin every 3 weeks). I'm supposed to have a blood test first so we'll decide after we get the results. It seems like this every-three-weeks thing is an emerging trend because I've noticed some of you are also doing the 3-week routine. Some of the symptoms I notice re-emerging during the last week include: headaches, acne outbreaks, aching joints, swollen hands and feet, emotional tension, short temper, depression.

Switching Medication

My devoted boyfriend David has been giving me my Sandostatin shot at home for the past few months, which concerned Dr. K. (If the needle clogs or all the medication doesn't get in, that's a lot of $$ wasted!) Dr. K prefers that I have a real nurse administer it (even though I have had nurses mess it up). Dr. K suggested that I switch to Somatuline, which is basically the same stuff (appx same effectiveness overall, although some people do better on one or the other) but in a gel form that doesn't require mixing or risk clogging in the needle. Somatuline does not need to be administered by a nurse and can even be self-injected. I'm slightly skeptical about switching, because my BF has been doing such a good job with the Sando shots, plus even though the Somatuline needle is smaller, I heard it described as a "blunted needle." BLUNTED NEEDLE?! Are you kidding me?!

I asked about Somavert, because I have heard that it is +90% effective in controlling acromegaly and I have always wondered why I've been fooling around with all these other drugs when everyone knows that Somavert is most likely to take care of everything. He replied that 1) it is expensive. Some countries (Scotland) won't prescribe it at all. 2) There are other side effects (something about more tumors?) that can be really complicated. There are some patients he knows taking Somavert, but he assured me that I should try to get my acromegaly controlled with Sandostatin or Somatuline first.

As a side note, I've been hearing in the news that "-statin" drugs are potentially dangerous, so I asked Dr. K about it and he assured me that the recent warnings relating to statin drugs refer to cholesterol controlling drugs, not Sandostatin. "Statin" just means it keeps the level of something static- STATin, STATic. I don't need to worry about those health warnings.

New Treatments

There is new research being conducted in two Euorpean countries on new 2 Acromegaly drugs. There are multiple kinds of receptors for IGF 1 or GH (I forget the details) and most medications only target one but they are working on targeting 4 out of 5 now. This may help shrink the tumor more than with current medications. Dr. K also mentioned that there was some research into a new extra long-lasting Sandostatin-esque drug, but he things the funding for that research might have fallen through. It would have been a little implant that slowly dissolves over the course of six months(!).

Radiation

I asked what he thought about radiation and he strongly recommended against it based on my age, the amount of time it takes to show results (several years), the chances that it would help (I forget the statistic, but it seemed low), and the risk of secondary tumors/cancers from the radiation. I'm fine with avoiding radiation, since I've always been afraid of being over-radiated and having to deal with hypo-pituitarism as a side effect, where I would need medication to compensate for lack of hormone production. I was scheduled to have radiation done back in 2006 to target my residual tumor, but I got a second opinion at the last minute and the doctors agreed that I should explore medication as treatment first and radiation should be a last resort.

New Procedures

The last time I had the university's neurosurgeon look at my MRI he said that I was not a good candidate for additional surgery because the residual tumor is in the cavernous sinus, which is dangerously close to a major artery. I asked if there were any new procedures or surgical techniques that have been developed lately (specifically mentioning my great hope for the future, nano-bots), and he said no. I guess we are pretty lucky, because I read somewhere that before they figured out how to do the transphenoidal approach (through the nose), they used to cut through the skull and squish the brain aside to get to the tumor. I remember them saying that patients would frequently lose their sense of smell because some nerve was frequently cut! On the other hand, my sense of smell has actually improved since my surgery because they performed a turbinoplasty (removing bumps inside the nasal passage that were blocking the flow of air) at the same time.

Diet

I asked about diet because I have been experimenting with eating vegan/vegetarian and I wanted to know if changing my diet might interfere with the efficacy of the medication or the side effects. He said there would be no real worries, although when I asked him later about hormone disruptors (chemicals that mimic the body's natural hormones) he mentioned that people with hypo-pituitarism that causes low levels of growth hormone (they have to take extra growth hormone shots!) are advised to avoid soy because it is an estrogen and it suppresses growth hormone (or IGF-1?) a little. I asked him if that meant that it would would suppress growth hormone in people with Acromegaly, and said that estrogen was one of the early experimental treatments for acromegaly. Of course, that doesn't mean that you should go out and eat a barrel of edamame, but normal amounts of soy are healthy and it won't hurt to have some.

Toxins

I returned to my age-old question about what causes acromegaly, because I'm not satisfied with the "a single cell mutates and then ... " explanation. That's a description, not an explanation! I have long suspected toxins (fumes from burning plastic and computers from 9/11, in my case) as the culprit or trigger for my acromegaly, and I have talked to some of you about your suspicions as well (solvents, second hand smoke). Dr. K told me that it is unlikely that toxins are the cause of acromegaly, because toxins usually cause cancerous tumors, and a pituitary adenoma is not considered malignant. One would expect that tumors would appear all over the body if there was exposure to toxins. I asked if there were some test I could take to see I had toxic levels of anything and he said there is no test to take because he wouldn't know what to test for.

I also asked about cell phone radiation causing the pituitary tumor, and all he could say is that we don't know. There have not been studies proving it one way or another. Everyone (almost) uses cell phones, so what would cause one person to respond with a tumor while another one wouldn't? There are so many factors in our modern world, all we can do is the best we can.

Detoxing

I went on to ask if it was safe for me to undergo a gentle detox program - no, I'm not addicted to illegal drugs! I meant a juice fast or a high fiber colon cleanse or something like that. When I had my colonoscopy a while back, I had to go on a liquid diet for a few days and after I was all through, my skin was incredibly clear, firm, and radiant! Also, I noticed that I had significantly more energy that before. Since my skin starts looking like a wreck when my GH levels get too high, I thought maybe detoxing is good for my GH levels. Dr. K was concerned that I was going to do something like a colonic because he considers them risky and questionably effective. I'm not planning on doing anything drastic like that. He asked me to inform him if I planned on doing a liquid diet or juice fast so that my electrolyte levels could be monitored. I asked him about other methods of detox that I've read about, like chelation, and he said that since it is unknown what specific toxins I would be trying to rid my body of, he wouldn't know what kind of chelation to recommend.

Keeping up to Date

My medical records are in a bit of a jumble- after moving so many times and switching health insurance plans and hospitals, it's really hard to keep track of when I'm due for what (MRI, visual field test, Colonoscopy, blood tests, appointments) and all the records (films, reports, blood levels, dates that I changed medications, etc). At the beginning I was really good at requesting a CD of all my MRI scans and copies of everything in my file, and I even had a dedicated datebook to track appointments, but I got lazy after a while and now I need to sort it all out. There's just so much! I have a folder that is at least three inches thick with all kinds of test results. So anyway, with my renewed effort to make health my #1 priority, I'm going to figure it out. Does anyone have a good system? I would love to hear your suggestions.

-
In the end, I ended my appointment with the usual tears of frustration over not knowing what causes acromegaly, which Dr. K, his attending nurse practitioner, his resident, and observing undergrad student were all very kind and empathetic about. (I tend to cry more when I'm due for my shot, which is scheduled for Thursday!) How come it seems like acromegaly patients are the only ones that want to know what causes acromegaly? Everyone else is only concerned with treating it.

I have been thinking about acromegaly in a very wide scale view, and it is quite amazing to think that even though we share a very rare disease, we are sprinkled all across the globe, across ethnicities and economic backgrounds. If you believe that Goliath from the David and Goliath Bible story was an acromegly giant, then the disease has been around for a very long time too. How come there isn't a better cure yet? Why don't we understand it better?

One question I was meaning to ask but I forgot was if Dr. K thinks Michael Phelps looks like he has acromegaly. Oh well, next time. Thanks for reading this far!

-Ellen

Congratulations, Brain Tumor Foundation

2009-01-17T11:09:00.001-08:00

The Brain Tumor Foundation recently launched its Mobile MRI Unit, "aimed at broadening public awareness about brain tumors and the urgent need for preventative brain scans."

Good Job! See their website:

http://www.roadtoearlydetection.org/

for more info. If you suspect that you might have acromegaly but you can't afford a MRI, check out their schedule to see if their free Mobile MRI Unit will be coming to a location near you!

Video about early detection by the Brain Tumor Foundation.

News Coverage of the Mobile MRI Unit along with interview and footage of someone actualy getting a MRI in it.

The Brain Tumor Foundation was nice enough to allow me to attend their support group right after I was diagnosed with acromegaly, even though a pituitary tumor isn't exactly a brain tumor.

I'm a huge supporter of early detection, though I'm not sure random brain scans of people who happen to be interested is the best way to find undiagnosed acromegaly. Maybe for brain tumors, but there are plenty of symptoms to look for first with acromegaly. My only other concern with the idea of the Mobile MRI unit is, I don't know how good it is to discover you have any kind of brain tumor while you are uninsured, because how are you supposed to afford treatment if you can't afford the detection? I'm pretty sure you will encounter "pre-existing condition" problems if you try to get individual health insurance. You folks living in countries with nationalized health care have much less to worry about!

IGF 1 up!

2009-01-07T04:59:00.000-08:00

Guys, I need a bit of help! My IGF 1 is going up, now at 454! Normal upper range value (reference value indicated in my lab test) is 307. Four months ago, it was at 404.

My GH values are: (1) 2.65 (baseline) and (2) 1.65 two hours after glucose load.

Overall, my results are not good! Problem is that we don't have the medicines here in the Philippines. I am not having radiation therapy! It'll freak me out! That's my last option.

My endo said that she will need to confer with a colleague from the U.S. on what medicine to prescribe. Seems like I'm her first acromegalic patient who's thinking of ordering the expensive medicine from abroad. The prices are so scary!

My prolactin values have always been normal. Hence, initially, my endo is thinking of giving me Sandostatin. But, next problem is how it'll be shipped as I've read that it has to be shipped overnight!

I'm worried, and I feel helpless...

Raising Awareness

2008-12-28T14:40:00.000-08:00

Hello! I hope you all had a Merry Christmas, are still enjoying your Happy Hanukkah, and are looking forward to a Happy New Year!

I have been visiting my parents in the Midwest, where we just hang out, eat too much food, and watch a ton of TV. So far we are gravitating towards medical dramas (House M.D. and Scrubs) and reality TV (Discovery Health). We've been watching all these shows where there are mysterious diseases and it reminds me so much of before I was diagnosed (and being misdiagnosed). Idea! We should write to all these TV shows and tell them about Acromegaly. Wouldn't acromegaly make a good episode of a medical mystery? There are so many potential wrong turns, misleading symptoms, etc, etc. I can see how doctors could easily rule it out because someone didn't immediately show the classic symptoms (hands, feet, face) which take a few years to develop. Having acromegaly discussed on TV will raise awareness of he disease, and hopefully help people get an earlier diagnosis. Early diagnosis is so important!

There are a couple of shows on Discovery Health about gigantism, which is close to acromegaly, but not as obvious. Is there a way to petition a network about what kinds of shows should be aired?

Goals for 2009

2008-11-22T18:04:00.000-08:00

I haven't had the chance to update this blog as much as I would like, and I'm already thinking of New Year's resolutions for this blog! If you haven't been added as an author yet, please email me and I can add you easily.

Here are the improvements I would like to see in the upcoming year:

More posts: at least 2 a month. Not just from me, but from anyone!
Design makeover: fancier looking banner, more interesting color scheme.
More multimedia: Embed acromegaly related videos, pictures, and audio.
Make some kind of profile page for each contributor to this blog so that people can see a timeline, what kind of treatment each contributor has had, and any other personal info they feel like sharing.
Some kind of outreach program to raise awareness of acromegaly and therefore help people get earlier diagnosis (and more successful treatment). There are so many other professionals besides endocrinologists that can be on the lookout for symptoms: ophthalmologists, optometrists, dermatologists, dentists, orthodontists, podiatrists, hand doctors, jewelers (adjusting ring sizes), make up artists, etc etc. Can you think of more? Of course the general public should know about acromegaly too. When I think about how long I had symptoms and how long I went undiagnosed and I really want to make so no one else has to go through the same frustration.
In-person meet up somewhere?
Get acromegaly to show up in spell check! So frustrating that most software doesn't recognize it as a word!!

Please leave your own ideas in the comments!

Updates!

2008-11-22T17:42:00.000-08:00

Hello Dearest Acromegaly Friends!

Thank you for your comments on the last post- I have updated the url for Miss Magpie and I would like to introduce the newest member of the community:

Trys!

I hope that everyone is doing well. I am sad that I missed announcing Cedars Sinai's Pituitary Patient day last month in Los Angeles- did anyone happen to go? I'm curious what they talked about and what kind of acromegaly turnout they had. They told me that there is a new acromegaly study starting soon and they need subjects- I don't have all the details yet but I will try to be better about sharing the info I get.

Welcome, Omar!

2008-08-30T13:13:00.000-07:00

New acromegaly blogger on the radar!

http://odelrio.blogspot.com/

He just had his surgery and so far it seems like his recovery is going great! Looking forward to reading more from Omar!

Any other acromegaly bloggers out there make sure to leave a comment with a link to your blog!

Pink Elephant in the Corner

2008-08-27T13:08:00.000-07:00

OK, I really, really don't want to come across as a hater, or rain on anyone's parade, but I've been thinking about this lately because of the large amount of news coverage.

Doesn't Michael Phelps look like he has acromegaly? I mean, people talk about how he's tall and he has big flipper-like feet all the time. His jaw looks a little enlarged too, and his teeth look like mine- too narrow on the top.

I know I'm not the only one who thinks so, because I did a search and there are a couple of other people who made comments about it.

Let me make it clear, I'm really not trying to tarnish his reputation or anything. Acromegaly or not he's a hot piece, but IF he does indeed have acromegaly he could be a really great spokesperson for the disease! He could really raise awareness of our rare condition, which would hopefully help others get an earlier diagnosis (and therefore more effective treatment), and also spur more acromegaly research.

Maybe we can start an acromegaly swim team!

Sandy Allen, RIP

2008-08-13T15:37:00.000-07:00

Sandy Allen, acromegaly (and gigantism) patient, died today. I've seen her on a few TV documentaries and I always admired her upbeat attitude. She lived her life with the utmost grace, and she is a personal inspiration for living a full and exciting life despite her diagnosis.

Some links:

http://news.yahoo.com/s/ap/20080813/ap_on_re_us/obit_tallest_woman

http://www.dlisted.com/node/27725

http://www.indystar.com/apps/pbcs.dll/article?AID=/20080813/NEWS/80813001

slideshow from indystar

Wikipedia Entry

I know the extreme nature of her condition might alarm those who have been recently diagnosed, but remember that she is the World's Tallest Woman and therefore on the far end of the acromegaly spectrum. I want to recognize her because she was such an advocate for "being different" and we all have the opportunity to have the same influence in our own ways.

Acromegaly Patient Education Day

2008-08-03T13:02:00.000-07:00

The Neuroendocrine Clinical Center at Massachusetts General Hospital presents:

Acromegaly Patient Education Day
(Program was held Friday, May 30, 2008 at MGH)

"The Neuroendocrine Unit at Massachusetts General Hospital is pleased to offer an opportunity for patients as well as their families to learn more about acromegaly and advances in surgery, radiation, and medical therapy. Speakers will include specialists in acromegaly and other patients diagnosed with acromegaly."

Here is the link: http://pituitary.mgh.harvard.edu/APED2008.htm

There are some informative videos posted on this site (from the conference) that you can watch - including patient stories. This is a great resource for anyone looking for more information on diagnosis and treatment of acromegaly.

Is breastfeeding safe?

2008-07-26T19:43:00.000-07:00

Guys, I'm getting worried. I'll have my one-month postpartum check-up with my endo tomorrow. My OB-GYNE advised that I should nurse my baby. I have been doing so for a month now, but I've read some internet materials saying that breastfeeding might increase a pituitary tumor. My last MRI (post-surgery) was indicative of a 3mm residual tumor... I feel that I'd rather shift my baby to bottle feeding much as I want to continue nursing her, than take the risk of a tumor regrowth---that is SCARY!!!

Blog Away

2008-07-02T13:50:00.000-07:00

Blogging...I think it's great therapy to get your thoughts out and it helps others, too! There is a new blog that has been posted by Miss Magpie who lives in Germany: http://miss-magpie.blogspot.com/. She recently had surgery and is sharing her story on Blogger. I would encourage y'all to check it out when you get the chance.

Also - anyone else who passes through this site, let us know if you've created a blog to share your story. There are many people looking for information on acromegaly, and most are wanting to read a personal experience from someone who has had surgery for a pituitary tumor. So, blog away (if you get the urge to) and tell others about you. Thanks to everyone who has shared their story with us!