Human Growth Hormone in the News

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

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?

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

(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?

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)

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

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

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"

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

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

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

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

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?

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

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"

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?

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!!!

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...

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!

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

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?????

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

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

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

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?

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

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

VA support

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

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!

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?

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?

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!

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

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!

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

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

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!

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...