Friday, December 20, 2013

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!

Tuesday, November 19, 2013

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.

Monday, November 4, 2013

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.

Sunday, September 15, 2013

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:


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.

Wednesday, September 11, 2013

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.

Wednesday, May 29, 2013

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??

Wednesday, February 20, 2013

IGF-1 Assay Range for Comparison

I've recently learned of an IGF-1 assay range issue, and thought it would be interesting to post the range used for me. It is from January of 2012. I was 35 years at the time this assay was used, and my IGF-1 was 283 ng/mL, growth hormone (ICMA) was 0.721 ng/mL, with a range of <=6 for all ages. My UCSF endocrinologist wanted me under 1 ng/mL for growth hormone.

IGF-1 (BL- blood level) Assay Range by LabCorp (San Diego, CA US) for use by UCSF endocrinology for Acromegaly treatment (San Francisco, CA US) January 7, 2012

Acceptance of the Disease, or just Tired?

I've felt many times lately a feeling of peace that I hadn't felt before in regards to life and Acromegaly. As though I'd come to terms, well mostly, with my Acromegaly. Maybe it's just Tired Jenny speaking? I'm not sure. I should surely have gone through all of the *steps* with over 6 years of confirmed diagnosis. But it's a nice feeling.

Stress, Anxiety and Acromegaly

I used to stress and be anxious about what caused my Acromegaly. I think I've mostly come to terms with it, and hopefully one day I'll stumble upon the reason. As far as managing anxiety and stress, I would try medication, but I don't because I always get side effects. I've learned to pay attention and listen to my body more, learn my triggers and try to avoid them ahead of time. I avoid crowds, certain individuals that stress me (I've completely cut some friendships), shopping at certain times, driving long distance, amusement parks, small children (just screaming/cranky ones), etc. I really work on communicating my feelings, and learning what bothers me. I've learned to manage pretty well, but some days none of my techniques seem to matter! Unfortunately this means I also avoid some things I love.