This conditon I feel is complex and sneaky hence the name I call it acromonster lol....I feel even the experts dont really know and in a way we are leading the way for others..I feel we all have to do what we feel is best for ourselves what might help one has not helped someone else like my drug for example for myself it has been the bees knees lol and ging from looking like this grey almost dead person who was being closed down into someone not unreconizable...I cant believe people did not believe me ....The drug somatuline autogel has been a godsend although for myself the inward damage was more than I even realized....The drug I know is holding me up but to me what I was to what I am its incredible...Make sure you ask plenty of questions and do what you think is right they dont know the answers as yet every treatment we do has something and we have to weight up the odds and look at the whole picture...Welcome to our group JJ

Thanks, JokeyJ. I appreciate your words of encouragement. What is somatuline autogel?

Surgery is generally the first option to take for most people. I had surgery in March 2009, and although it was not a total cure, it has made things a whole, whole lot better. I am shortly due to start on Somatuline Autogel (lanreotide, monthly extended release) to "mop up" the bits that the surgery didn't deal with.

BTW the surgery itself from a patient perspective was a doddle, I was a bit tired for a few weeks but otherwise recovered really well.

John

Thanks, John. I need to go back and ask the docs exactly why they are not recommending surgery for me. My last MRI shows a 1 cm tumor slightly off midline and deviating the pituitary stalk to the left. Also, indents the floor of the sella turcica.

I wonder if this stuff makes the surgery too risky or complicated? The nurse at the clinical trial say she sees lots of patients who had surgery, were told that they were cured, and then ended up on shots anyway. I wonder what the real long term success rate if surgery is?

Hi again Ledgy...I see JD has put what Somatuline autogel is....J make sure the toilet roll is ready in the freezer ROFLOL....I went to a meeting we had a support night with different people with pit tumours..I had to put up my hand and ask because the word cure was said....They mean cure as in getting you to a good manageable conditon....The Encro agreed that the word cured should be used more carefully....

Jokey, I had a bit of pre-warning from the test dose they gave me of octreotide a few weeks back (the octreotide suppression test). Funny, it never worked like that when they tried it before (pre-op). The,er, liquidity settled down after the second day but I felt so bloated and had such gut ache and flatulence for a couple of weeks. I ended up buying some Colpermin (irritable bowel syndrome medicine, OTC) at the chemist's. I'm hoping the long-actual formulation doesn't give me long-acting bad guts!

Ledgy, the docs should be able to explain to you why they recommend that course of treatment. Surgery is recommended for most people in uncomplicated cases. As long as it isn't only because they need new-drug guinea pigs!

John

I dont know why Im laughing oh it was bad and the times at work lucky I guess I worked with men I could fart(can I use the word fart on here LOL and blame them LMAO oh Im cracking up here oh it was bad and of course ladies dont do wind do they :)..I did have real bad sickness bouts and the D word but it cleared up I guess surgery would save on toilet roll LOL....