Acromegaly Support Group

Good morning to everyone,

I ma writing from Italy, I will get married on July 8th

with a man to whom acromegaly has been diagnosed one week ago!

unfortunately we have been told that surgery is not possible at the moment because adenoma is 1,5cm and we will start the medical therapy with Sandostatin and see what happens.

We are worried about it, also beacuse is teh first time we hear about Acromegaly and even if we live in Milan were the best medical center are located, we clearly understand the doctors are treating the case talking about sperimental therapy.

Is there anyone who knows about Sandostatin?

Is there anyone who can help me with this big problem?

thank you all, I really hope to find some help!

sandra

Sandra,

See if you can find a Neuroendocrinologist. They know about Acromegaly and would be best able to help your husband. Sandostatin is a treatment for Acromegaly but usually with an Adenoma that large they want to operate too.

Sounds like you're biggest problem is finding a professional that knows about Acromegaly. Don't panic. Just look for a doctor that has some experience with it. I would think even in Italy that there must be some Dr. that would know about it. The doctor that came up with the Sandostatin idea knows enough to put him on that, so see if he can refer you to a surgeon or at least ask why, if it's touching his optic nerve, which I assume it is, is he ruling out surgery.

This is tough for me because I don't know how your healthcare works over there, but there ARE treatments out there that are NOT experimental and Sandostatin is one of them.

The only way to know if the Sandostatin is working is through follow up bloodwork to be monitored by the doctor, specifically the IGF-1.

Good luck and you're going to have a lovely wedding and many happy years to come! Congratulations on that.

Cindy

First of all I never heard of a nueroendocrinologist. There are nuerologists, nuerosurgeons and endocrinologists. All pituitary tumors are NOT on the optic chaism. Mine was not near that. Everyone's tumor is not the same. Many, many variables and different treatments and you hear different things from doctors. They don't even sometimes know how to treat us. Most people end up having horror stories.

Many practitioners prefer to treat large macro adenomas medically first to try and shrink them a little. On of the biggest surgical risks is damage to the carotid arteries (which are the main blood supply to the brain). Having a good team of a Neuroendocrinologist (an Endocrinologist who specializes in endocrine disorders originating from central nervous system tissues) and a neurosurgeon who specializes in skull base surgeris is optimal.

sandostatin has been around for some time. Biggest published side effects (though I would rely more on members personal experiences) include elevated blood sugars, gall stones and diarrhea. These are treatable while the irreversible heart and kidney damage in untreated Acromegaly are not. I do not know much about the specialists in Northern Italy so I'm sorry I can't help there. Usually University affiliated medical centers have some of the best sub specialists.

Post edited by: Accrozombie, at: 03/04/2012 07:20 PM

What bothers me about that one is the word "statin" in it. Does that mean it's hard on the liver? (Well I suppose most medicines are come to think of it).