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!
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!
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2 comments:
Oh Jenny I so feel your rollercoaster ride. I'm happy that you found an Endo who is willing to help you as this is a Chronic Disease and we need constant monitoring and care. You will begin combining Sando and Somavert. As you read my blog, I did the same but without any luck. I had to get family involved cause I was really sick my first week (flu like symptoms)Very common when starting Somavert. As a new patient to Somavert, you need to get 4 initial injections. I actually had to stop after 3 cause I almost passed out (anxiety). I did have constant contact with a rep from Somavert which was helpful. However, I really did not feel well on those meds. I only injected in my stomach and buttocks and even then, I stopped injecting in my belly and just used my buttocks. I truly wish you lots of luck with this new treatment plan. Yes, I am happy that I am a good candidate for surgery again cause boy I'm not feeling well. Thinking of you lots, Julie
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!
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