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Acromegaly

Question:

What medical treatment did you undergo to treat your acromegaly? Submit Your Comment

Comment from: farmerrick, 65-74 Male (Patient) Published: June 12

I had surgery for macroadenoma in 1985. I had yearly follow ups for 15 years. They did growth hormone blood test each year which were normal. I do not know if it was IGF-1 or not. I did not do any more follow ups for 20 years. I developed diabetes in 2013 and the endocrinologist did an IGF-1 and it was around 800. They put me on Sandostatin LAR Depot to treat my acromegaly. They started me out on 20 mg, then 30 and eventually 40 mg, all with mixed results. MRIs showed no definite tumor. Neurosurgeon would not do surgery and recommended radiation. I had CyberKnife radiotherapy in April of 2018. They took me off Sandostatin in February 2018 and I have been off of it for three months. Today 6-8-2018 my IGF-1 was 900. They put me back on Sandostatin 20 mg with a follow up in three months. All of my doctors tell me it could take from a few months to a few years for my IGF-1 level to return to normal. They say it is possible that the radiation could wipe out my pituitary and I would have to take thyroid hormones and steroids for the rest of my life. This scares me to death about taking steroids long term due to the side effects.

Comment from: Maona, 25-34 Female (Patient) Published: January 25

From 2013 I figured out that I have microadenoma and acromegaly, following which I had 2 operations in 2015. Three months after the second operation I have started with different injections and the last medication is Signifor 60. It also does not work for me and my physician told me that radiotherapy can only control growth of tumor and he does not have any idea about how to control IGF-1 level. I am totally disappointed these days. If you have experience with radiotherapy please share it, it can help other patients to get familiar with different aspects of acromegaly. Particularly, people who live in U.S, I live in Europe currently.

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