Acromegaly Support Group

Jokey J diagnosed 2007 not had surgery not had radiation but on a drug called Somatuline autogel the largest dose and at moment the drug has dropped levels in normal range

That is a great idea for me because I am new here and I really like talking with you guys. I had no meds for Acromegaly before my surgury,and no meds after.So far so good.

I had Octreotide injections, 3 times a day, (300mg daily) for 3.1/2 weeks prior to my 10/16/08 transphenoidal surgery to remove macro tumor. IGF-1 and GH going down down down slowly but steadily... No meds since, no tumor since, so far so good..another great idea from jokey...gracias

yeah i think its great idea for us newbies, everything gets a bit confusing so this is great!
diagnosed early2007, not had surgery, gone from half tablet of cabergoline to 1 whole...then up to 2 whole a week. still trying to find the right dosage as levels are still not normal.

Guess I could give a little more details, Was diagnosed in Aug.07, had transsphenoidal hypophysectony of macro tumor in Nov.07. As of Jan. last MRI no tumor left. IGF-1 is normal and HGH is going way down. No meds before surgury for the acromegaly and so far none afterwards.

My vision blurriness started in April 2007. The tumor was found in October 2007. My optic nerve was compressed and my right sinus was totally blocked. About half of the tumor was removed by transphenoidal surgery on 11/20/2007. I still have a very large amount of tumor left but thankfully my vision is 50% better and my sinus cavity is clear. My major symptom is a constant headache but ibuprofen helps. I have been on ostreotide (3 per day, 150 mcg per day)since 1/11/2008. My last lab showed my IGF-1 was down to 244. My neurosurgeon is recommending radiation but I want to find out more information about proton beam radiation therapy.

MRI found tumor 11-06,had surgery March27,2007anniversary coming up)no meds prior to surg, taking thyroid 112mcg daily,Haven't had follow up MRI-which was ordered last Sept. too chicken! Levels continue to drop, going to endo April 2, 2008.

diagnosed over two years ago was on lantriotide injections first up didnt work IGF1 levels didnt settle now on octreotide 30mg once a moth worked at first but then IGF1 levels went up ,operation set for 30th of april thats if my sinus infection is gone (quack quack)little black duck

I don't get why some of you guys haven't had surgery? Is it because the tumors are too large?

thats a good question really. ive wondered that. i havent had surgery yet as its early days but the doc did say that if the medication im on at the moment doesnt work then there are injections to try and then surgery if that doesnt work. so how far can you go without having surgery???