Monday, August 31, 2009

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!

Monday, August 24, 2009

"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.

Saturday, August 8, 2009

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

  • 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

  • Avoid sugary foods
  • Exfoliate

  • 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.

Monday, August 3, 2009


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.