Acromegaly question

Hello,

Got acromegaly diagnozed 7 months a go with a 10 mm tumour partially invading the cavernous sinus. Was put on Sandostatin Lar in an attempt to shrink the tumour a bit and make it more "operable". At first my IGF-1 went from 770 to 400 on Sandostatin Lar 20 mg but has since steadily increased and is now at 680 even when I´ve been on 30 mg for three months.

The good news is that the tumour size has slightly decreased so it should be a little bit easier to remove it according to the neurosergeon. Still my doctors haven´t decided yet wether to continue the Sandostatin treatment or give surgery a go.

Can any one comment my case. I´m a bit in despair beacause I really don´t have any clue on cure rate etc. It also feels a little bit odd that tumour size decrease and IGF-1 increase.

Yours faithfully,

Jonas Balte, Gothenburg Sweden, 31 years old

[jules21]

My name is Julie Cousins I live in the united states. I was diagnosed with acromegly (acromegaly) in october of 07 after having a pituitary tumor partially removed. I also recieved radiation treatment and Iam currently on 120mg of somutiline depot. That is the highest dosage for that type of medication. my igf1 level has been as high as 800. I do know that levels can fluctuate from day to day. my current level is 400. I think if they remove the tumor you will see a great change i your numbers if they are able to remove the whole tumor. My tumor also invaded my cavernous sinus. If you would ever like to further talk for support or information my email adress is ***@****