Friday, February 20, 2009

Where are all the support groups?

I was checking out one of the support forums, 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.

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!

Tuesday, February 17, 2009

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:

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

Friday, February 13, 2009

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:

Tuesday, February 3, 2009

Welcome, Julie!

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

Check out her blog with a great title:

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

Monday, February 2, 2009

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(!).


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.


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.


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.


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!