Acromegaly Support Group

Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.

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deleted_user 04/03/2009

Tumors smaller than 1 cm are microadenomas, larger that 1 cm are macroadenomas, and larger than 3 cm are giant adenomas.

Mine is currently 3.5 x 3.0 x 3.3. I know that it's pretty big.

I have is a giant prolactinoma, for which surgery is not the best option. I hope it will further shrink because of medications I take.

What's your size?

JohnD1 04/03/2009

Mine was 7 to 8mm. Hopefully now 0cm. I'll have an MRI in a few months in which they should be able to check.

John

JaneyBell 04/03/2009

Mine was 5mm X 8mm X 10mm based on the MRI done Feb. 20, 2008. My GH & IGF-1 were 10 times greater than normal. After surgery, GH was within normal range but IGF-1 was slightly elevated at 276 (Endo wanted it between 92-190). Have had blood checks twice since going on Sandostatin LAR and both GH & IGF-1 were within desired range. Seeing my neurologist next week & Endo in two weeks.

Trys 04/03/2009

Most people diagnosed with acromegaly are found to have macroadenomas, around 80%. It's mainly to do with the amount of time it takes for the main symptoms to become apparent and someone to make a diagnosis.

My tumour is 1.1x1.5x1.5cm that makes it a macroadenoma.

www.acromegaly.wordpress.com/2008/12/24/mri-scan-results/

Trys

deleted_user 04/03/2009

It is interesting that so far I have not had some of severe effects described by others, who have smaller adenomas. My IGF-1 levels initially were only four times as high as normal. So perhaps size is not the most decisive factor.

Trys 04/04/2009

Yarick,

If I'm reading it right, you have a prolactinoma, so you have primarily a prolactin-secreting tumour, am I right? What levels are your prolactin, if I may ask?

Trys

deleted_user 04/04/2009

Trys, my prolactin levels now are around 90 (17 being the norm). However, at my diagnosis (a year ago) they were around 4500 (more than 300 times the norm). Cabergoline does a great job in reducing the levels and it also shrinks the tumor.

deleted_user 04/04/2009

My tumor was 4cm x 3cm x 4cm. It is about half that size now after debulking surgery/radiation/drugs. My levels are now normal after 6 years of treatment.

deleted_user 04/04/2009

ronwagner,
are you on Pegvisomant now?

AussieFay 04/04/2009

That was one heck of a tumour Ron, so glad it has shrunk and your levels are in the normal range.

flouncy 04/06/2009

mine was 9mm now it is 3mm. has shrunk using somatuline auto gel 60mg.

deleted_user 04/06/2009

My tumor originally was 4.8 x 4.6 x 4.8.

Medications helped to shrink it. "Luckily", it is a GH-secreting prolactinoma, which makes shrinkage more significant.

spiegal 04/07/2009

Hi,
13mm 2 surgeries, remnant tumour, radiation, med
levels not coming down, next step I think is Pegvisamont.

deleted_user 04/11/2009

By the way - I am still puzzled by how they measure the tumors.
As I understand, they pit tumors are of are of irregular cup-like size.

deleted_user 04/11/2009

I meant cup-like shape.

deleted_user 11/22/2009

Hi - how are you doing?

Just got the scan results on Tuesday - my tumor is 1.8cm x 1.1cm and they want to surgically remove it. They are going to try monthly injections first as I will have to wait a long time for the surgeon.

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