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New member--Sandostatin not working
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From:
![]() ![]() Jacush2
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Great site for information and support. I found out I had a pit tumor 04/04 having having difficulties conceiving our second child. I was 31 years old. I was very surprised. Soon after that I learned that I had Acromegally as well. I had TSS procedure 06/04 at Mass Gereral. I still have remaining tumor. Postoperatively, I had normal Prolactin levels and conceived the next month. I had a very healthy pregnancy with IGF levels in the normal range. After the birth of our second son the IGF levels steadily went up again. I started on Sandostatin LAR with increasing doses up to 40 mgs. I added Somavert 10 mgs twice weekly but felt lousy. My IGF levels are still in the 300's. I had stomach upset, diarrhea, irritability, anxious unhappy. I am now on Sandostatin LAR 30 mgs monthly. It is looking more like some type of radiation/gamma knife procedure is in my future. I am otherwise a healthy and active individual without any physical symptoms and hoping to keep it that way. If anyone is or has been in the same boat, I'd enjoy hearing from you. |
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