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.
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7 comments:
Hi!
I am so sorry that you didn't get into the trial... Think that you could have got the Placebo instead...
thats awful about the IGF! I hope your doc can figure out some other was to get your IGF down!
That sounds disappointing. Sorry you were not qualified for the trial. :(
That's really sad. Just try to be more conscious of the many blessings around you. Life is good no matter how it sometimes it feels like it's so unfair. It is good and i know in your heart of hearts you'd agree. Cheer up, ellen =) You're pretty, intelligent, young, and so many other things to the people around you.
Hi Ellen,
What a let down. I was sure looking forward to hearing about your experience and hoping that you would feel better with the new treatment.
I was also being given the Sando every 4 weeks but it just wasn't enough. Now, I have it every 3 weeks (since Jan 2009) and my IGF-1levels are lower and I feel much much better. Just wanted to mention this as you may want to mention it to your Endo. My dose is 20 mg.
All the best,
Julie (Canada)
Thanks everyone for your kind comments. I was disappointed for a while, but now I'm just focusing on what's ahead.
Maybe Julie S. advice is a good thing to comment to your endo: I am on Somatuline Autogel, and the maximum dose is supposed to be 120mg once every 4 weeks, but I get it once every 2 weeks and it seems to be working (not a lot but better than before...)
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