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. 

New Endocrinologist, New Treatment Plan

Well I'm excited and worried at the same time. My current endocrinologist, Dr Quobaitary in San Ramon, referred me to another endocrinologist since my Acromegaly is not controlled well enough. I knew that would happen from the start. He made no secret of the fact that he'd only treated 4 Acromegaly patients. But I had really wanted an endocrinologist closer to home because driving stresses me so much. He's a very warm, caring, knowledgeable doctor, but he doesn't specialize in Acromegaly.

I met today with Dr. Katznelson at Stanford. I feel more secure knowing he's the one who visibly diagnosed me as Acromegalic in 2006, without an MRI. I also know that he's a prominent figure as an endocrinologist and researcher of Acromegaly. Dr. Katznelson told me that my disease is not under control and that we need to change treatment. Physically he noticed Acromegaly tissue swelling on my forehead that other endocrinologists had not noticed. He also suggested I have a sleep apnea study since I'm so fatigued, even though I don't snore often. He stated that he and a panel of doctors do not think high doses of Sandostatin LAR are good (40mg plus). They've also seen that adding Somavert with Sandostatin works well. These are things I'd already heard.

So he's lowering my Sandostatin to 30mg every 4 weeks, and adding Somavert 20mg every other day. We'll reevaluate after 6 weeks and maybe go down to Somavert a few times a week or once a week depending on how well I respond. I mentioned Gamma Knife and he stated that they could do Gamma Knife or Cyber Knife, but that would be an option for future discussion after he and his panel of doctors review my MRI's. He didn't seem to think that was the best option for me right from the beginning though.

I'm happy and hopeful, and I feel like I have an endocrinologist who is trying to take care of me, and knowledgeable enough to do it. Luckily my insurance covers Stanford now. I hope I tolerate Somavert well. But I worry now about quality of life because I will have to do Somavert injections myself, and I worry about refrigerating medicine at home, or dealing with injections when I travel. I think I've also avoided having medicine at home because it's kind of depressing, and it makes the disease a little too real for me. But it's apparent that things need to change. I'm going to look into refrigerated medical bags like this one my friend sent me in a link.

For my New Year's resolution, maybe I will resolve to be a better patient and listen to my doctors more often haha :-) I hope everyone has a Happy Holiday and New Year!

Change In Treatment Plans On Hold

I went to see my current endocrinologist with my list of symptoms that I think are caused by problems injecting Sandostatin, and/or by taking too high a dose. He basically told me he didn't know what to do with me. No surprise there. I knew when I started seeing him that he'd only treated 4 acromegaly patients. My GH and IGF-1 are very good, both within normal range on 40mg every 3 weeks. And it's a noticeable improvement over the 40mg every 4 weeks. So technically my treatment is good, but I don't feel good with my current negative symptoms. He referred me to Stanford to see Dr. Katznelson. I'd already planned to see Dr. Katznelson a few months ago, but I've been putting off the visit. I hate to have to change my treatment, or to be suggested treatments I don't agree with. Not to mention it stresses me out to drive out to the bay area. My endo did lower my Sandostatin dose to 30mg every 4 weeks to see if that is causing my problems. But I didn't realize my primary doctor's office already had 2 months worth of medication on hand. So I had my 40mg injection yesterday, I'll get the 40mg injection in 4 weeks. Then I may go down to the 30mg, unless I happen to get into Stanford before then and have a different treatment suggested by Dr. Katznelson. I also got my enrollment form sent in for Sandostatin's mobile nurse administration program. I hope that helps. Thinking about changing treatment, and a friend currently planning to do Gamma Knife makes me wonder how many acromegaly patients respond well with radiation. The thought of losing pituitary function and needing HRT worries me. But having acromegaly symptoms uncontrolled by medication is a worry as well.

Drastic Change in Acromegaly Treatment

Hopefully I'm not rambling without making sense. Hopefully I do know my own body, and know what is right for me. I have a plan to drastically change my Acromegaly treatment.

In the last year I think my injections were done incorrectly. I thought I was experiencing scar tissue due to receiving injections of Sandostatin LAR for 6 years. My primary doctor had problems injecting almost every month, and there was some spillage of medication. My injections were usually done high on the buttocks. In the last year, I started developing these bubbles under the skin, as though the medication collected in one place, and was not distributing properly or quickly enough. I had some irritating symptoms in the last year. But on reflection, I had so much energy! I could work from home around 15-20 hours per week, entertain people at night, participate in other activities (even river rafting), no problem. My high blood pressure went away, even though I gained weight. I felt as close to "normal" as I ever have since developing Acromegaly.

But in the last few months, I asked the doctor to change the injection location based on the Novartis instruction booklet (rev. 4/04). Based on their booklet, the injections should've been done lower by about 2 inches. Since the change, I feel so very fatigued, and I have brain fog, memory and concentration issues, trouble speaking and conversing, so many more muscle and joint aches (arthritis-like pain), depression, anxiety, insomnia, and many more symptoms. I do remember feeling like this before my injections were done "incorrectly." What a difference!

I then looked at my history of treatment, and examined my GH and IGF-1 results since 2007 using an excel file. I felt pretty dumb for not doing so earlier. I'll blame trust in my doctor, and drug induced brain fog. On 20mg LAR my GH and IGF-1 actually increased. On 40mg every 4 weeks, my GH went down but IGF-1 was high normal. I think I developed high blood pressure due to higher doses of Sandostatin LAR, and possibly gained weight 15+ lbs due to this also. I was surprised to see that I have almost the exact same GH and IGF-1 results on 10mg every 4 weeks, as on the 40mg every 4 weeks! On the 40mg every 3 weeks, I did see a bigger decrease in GH and IGF-1, but it's not worth the side effects! Hopefully my endocrinologist will agree with me. I want to completely stop the Sandostatin LAR, then reintroduce at 10mg if necessary. I may have to be a bad patient and not listen to him though :-) Or change endocrinologists! I'm very stubborn, in many ways I am my own downfall. I've always insisted that a doctor perform my injections, rather than a nurse. I think I may try to be smart now though, and try to utilize the Access Sandostatin / Mobile Administration Program. A trained traveling nurse to perform injections at your home or other convenient location, what a concept!

EDIT: An Acromegaly friend advised me of a potential problem when stopping Sandostatin. She knows another person with Acromegaly who did the same thing and his IGF-1 went up rapidly. He ended up having to increase the dose of Sandostatin and start Dostinex to get back to normal levels. I'm definitely taking this step seriously, and am planning to monitor things closely if that's the decision I make. If nothing else, I'd like to decrease down to 20mg every 4-6 weeks.

Sandostatin LAR Side Effects

I definitely don't think there's a complete list of side effects for Sandostatin LAR. I've had a lot of weird symptoms that I believe may be side effects since being on Sandostatin LAR for over 6 years, since May of 2007. Here is a list of my symptoms that I think may be additional side effects. I'm not sure if it's due to taking a higher dose of Sandostatin LAR (I'm on 40mg every 3 weeks).

Extremely dry flaky skin (especially on upper arms, torso, and head)
Hair loss (I lose a lot of hair when brushing, and have a patch of "hair cleavage" on the back of my head)
Heart palpitations (especially after drinking too much soda)
Metal sensitivity (skin rash from necklaces or rings)
Sun sensitivity (skin rash, easier to sunburn)
Muscle sensitivity (Fatigued by high winds and cold temperatures. Repetitive or continuous activities like exercising too hard, holding a book while reading, or holding a steering wheel while driving for long periods can cause fatigue, muscle tightness, jumpy/snapping sensation in muscles, and neck aches/headaches)
Flushing (neck, chest and face rash when I get too warm, or anxious) Animal Allergies? (runny nose, itchy eyes when exposed to cats or dogs, or to dander on someone's clothing)

Side Effect List from Novartis' Web Site:

IMPORTANT SAFETY INFORMATION

Warnings and Precautions: Treatment with Sandostatin LAR Depot may affect gallbladder function, sugar metabolism, thyroid and heart function, and nutritional absorption, which may require monitoring by your doctor.

Before taking Sandostatin LAR Depot: Tell your doctor if you have a history of heart disease or are taking other medications, including: cyclosporine, insulin, oral hypoglycemic agents, beta-blockers, and bromocriptine.

Common side effects: Most patients experience side effects at some time. Some common side effects you may experience include:

Acromegaly: diarrhea, gallstones, abdominal pain, and flatulence
Carcinoid tumors: back pain, fatigue, headache, abdominal pain, nausea, and dizziness

Other information: Patients with carcinoid tumors and VIPomas should adhere closely to their scheduled return visits for reinjection in order to minimize exacerbation of symptoms. Patients with acromegaly should adhere to their return visit schedule to help assure steady control of GH and IGF-1 levels.

Yes I'm Still Alive - Feel Free To Email Me

Hey everyone. I just wanted to say yes, I'm still alive :-) I received an email from a fellow Acro wondering why I was neglecting to post. I'm including some of my response here. I'm sorry I don't blog as often. Part of the reason I was so active online in years prior is because I was still figuring things out, and still coming to terms with the disease. There were also much fewer online resources for Acromegalics. Now we have so many that I wonder how rare the disease really is. So yes, usually if I don't blog it's because things are going well. It's still rough but mostly I do ok, and my treatment is pretty straightforward. Since changing to an endocrinologist closer to home, my stress level has gone down (I think I have whitecoat anxiety on top of everything else!), and I only visit him once a year. My labs are once a year, and MRI's once every 3 years since there's been no change in so long.

I also try not to dwell on the Acro because I'm one of those people who will worry it to death, and be online Googling everything for 12 hours straight, or till I fall off my computer chair passed out :-) I think I've already done enough worrying with 7 years since surgery alone! And truly part of my neglect is frustration with this disease, because there are so many unknowns. It's sad when I think I'm more knowledgeable than my doctors sometimes. I also don't want to post as often and feel like a big whiny baby :-)

That said, I always like to be there to help out if there's someone with Acro who needs to compare notes, just needs to talk, or to meet in person. I've met in person Ellen from Acromegaly Bloggers, Wayne Brown from Acromegaly Community, and was lucky to meet Tanya Angus before she passed. I think that meeting my fellow Acro's in person did help in my search for information, validation, and my healing process. There are a few people with Acro that I still speak with via email. Please feel free to contact me. I'll likely respond to email much quicker than I will to write a blog post.

LAR Injections & Scar Tissue

I'm wondering if anyone has a problem with scar tissue inhibiting injection of Sandostatin LAR? I'm on 40mg every 3 weeks. I've been getting LAR injections for almost 7 years. In about the last year my doctor has been having problems injecting, and a significant amount of medication is spilled. At first I thought he wasn't thawing medication properly. But it's happening almost every month now. I also have hard lumps as though medication collects in one spot and doesn't distribute. I haven't tried massage extensively, but its very painful and doesn't seem to reduce lumps. My symptoms are trying to return and my IGF-1 is slowly increasing as I'm not receiving the optimal dose. Anyone with experience or suggestions?? I'm hoping I don't have to go the daily injection route. I imagine I'd eventually build scar tissue that way too. Thanks!

Update 9/11/13: I think I have the answer on the scar tissue, time will tell. I realized my doctor was giving my injections too high on the buttocks, and not rotating them as much as he should've. Not that I can blame him, he's my primary care doctor, not an endocrinologist. My horrible memory and lack of attention to details doesn't help either. So it's been two appointments since he's been injecting and rotating properly. The lumps from injection are much smaller, and there's no problem with administrating the medication (no spilling). I've also made sure to lay down when getting injections, to ensure that he can see the injection site properly.

Now I'm wondering if I need as high a dose, or as often an injection as I'm receiving! I've been extra fatigued and irritable. My GI problems seem worse. And my muscles are very sensitive and sore again. I'm guessing it's all Sando related. Hopefully it will clear up after a few months??