Monday, May 12, 2014

My Short-Lived Somavert Experience

This time I'm talking about Sandostatin (Octreotide) vs. Somavert (Pegvisomant). As I mentioned before, in December I met with my new endocrinologist, Dr Katznelson at Stanford. I really liked the responsiveness of the physicians, and their online patient messaging system. He suggested I start Somavert 20mg injections every other day, on top of the Sandostatin LAR 30mg I was taking once monthly. I've been against daily injections at home from the beginning of my treatment due to decreased quality of life. Living with acromegaly is stressful enough by itself. In fact I've learned over the years of living with acromegaly that it's very helpful to avoid as many stressors as possible, which usually involves advanced planning.

The Somavert process was interesting. Stanford was very helpful in arranging everything. I was placed on the Pfizer-Bridge program so my copay was reduced to only $5 per month. I was also given a home nurse to train me on how to prepare, inject, and store the Somavert. I disliked the Somavert paperwork from the start because of the images of acromegaly patients that were used. Their models were much older than me, and very visibly acromegalic. I didn't identify with them at all. It made me realize how well the Sandostatin has helped to control my physical appearance. The Somavert paperwork included a helpful plastic placemat with instructions printed on it. I also bought a refrigerator thermometer to make sure the Somavert was stored at the proper temperature. 

The process of injecting was pretty stressful for me. Seeing the sharps container for proper disposal of needles made the process all too real for me. I bought a pretty basket to contain my instructions, sharps, alcohol swabs, etc. Maybe what I really wanted to do was hide my head in the sand as much as possible and try to forget I have acromegaly. That's probably a good and bad thing :-) I also have a hard time remembering things and can get irritable easily because I lack patience. I was frustrated because I wasn't good at injecting, but it's supposed to get easier with time. I kept having problems with air bubbles in the needle and that worried me. I called Stanford for help and the nurse practitioner was very helpful. But I couldn't really master the process by myself at home. On top of that I don't think my body was tolerating the Somavert well. I was on 20mg for a few weeks, then went down to 10mg for a week due to side effects. My experience was the same regardless of dose strength. I felt more fatigued, anxious, stressed, and was crying often. I felt like I regressed to the days before I even started Sandostatin. From my personal experience, I knew I wasn't going to feel better if I stayed on this drug for a longer period of time, so I decided to discontinue Somavert. 

It's possible that if I discontinued Sandostatin, then introduced Somavert alone, I may have tolerated it better. But I'm unwilling to discontinue Sandostatin. I've tolerated Sandostatin very well in my opinion since I began treatment. Sandostatin mimics the Somatostatin hormone, or Growth Hormone Inhibiting Hormone (GHIH), and also inhibits a few other hormones. Sandostatin has the benefit that it inhibits growth hormone at the pituitary gland, helping to prevent tumor regrowth, and has been shown to cause tumor shrinkage. Somavert is a Growth Hormone (GH) receptor antagonist that inhibits growth hormone by binding to growth hormone receptors on cells throughout the body. It doesn't necessarily prevent the original tumor's regrowth. 

I also found out that I'm a good candidate for cyber knife surgery. But I'm not yet convinced of the effectiveness of the procedure. So I guess I'm back to square one. At least I tried something different. The good that came out of the experience is I lowered my dose to Sandostatin 30mg once monthly. I wasn't sure I'd be able to handle living on the 30mg alone. It took a few months to adjust, and my memory isn't the greatest, but overall I'm functioning much better. I believe it also helps that I started drinking about 6-8 ounces of strong Starbucks coffee daily. It's helped my blood pressure hit the normal level, around 120/80 or less, that's like a miracle for me :-) I'm having more labs done soon including GH and IGF-1, and I'm keeping my fingers crossed that at most I'm still in the high normal range. I know I feel much better, much more peaceful daily and not as prone to stress. 

3 comments:

Julie S. said...

Hi Jenny,

I couldn't agree with you more. Hence the reason I stopped Somavert also. Side effects were terrible and knowing I had to self inject DAILY was a huge stress for me. I'm updating my blog. Had my visit in Toronto today for my 2nd opinion.

All the best,
Julie

Mrs L. Callico said...

Hi Jenny
I have today my somavert 10 mg injection #48 and so far I only had side effects the first three days, after that nothing else. I think it is working because I can see my face less swelling and my foot and toes better too.I am waiting for my last labs result to come and check if my IGF-1 dropped , In Dec 2016 I had 718, I hope It went down. I can not inject myself, so my husband or a cousin do it for me every night, thanks God.
Best for you.
Lorena

Jeana Nishihara said...

Hi,

I know this is an old post but I am hoping someone from the San Francisco Bay Area sees this posting. I am in need of 8 people to come in to our office here in San Jose, CA to evaluate the instructions that come along with a new medication delivery device used to treat Acromegaly. Individuals will only simulate the use as we are not a clinical trial.

Pays $150 for a 45-60 minute session.

We are trying to verify the instructions for use are clear and easy to read and that it's ready for distribution.

Please contact Jeana @ 408-834-8443 if you are interested in participating.

Thanks so much!