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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jimok 07/23/2010

Hi,
I'm from Ireland and I'm new to this group. I was diagnosed about five years ago, had surgery, radiotherapy (macro-adenoma)and am currently on Sandostatin Lar (Octreotide) and Cabergoline(Dostinex). These drugs are designed as far as I know to suppress GH/IGF production.
Acromegaly Ive read is mainly caused by a genetic alteration in a single pituitory cell. Does anyone know what advances have been made in this area ie. are there newer drugs that I should be on, that target the cause not the result? Is there or will there ever be a drug available that will target and kill off these faulty cells and give us a real permanent drug free cure?
If I'm lucky enough to see my Endo every six months and ask these type of questions they look at me as if I have two heads instead of one enlarged one.

JohnD1 07/24/2010

Jim

You're on what is probably as good a medical treatment as anyone here.

Sandostatin (octreotide) or Somatuline (lanreotide) is the standard medication. Cabergoline is sometimes added if the somatostatin analogues don't work well enough on their own.

When I asked my endo consultant why lanreotide rather than octreotide, he said "easier to administer". I think their effects are pretty much the same.

Lanreotide "worked" for me, it's just that it made me feel truly awful. Now the effects on my guts have almost resolved (almost five months after my third monthly jab!), I am going to try cabergoline on its own.

It would be nice for future generations for some medication to stop these tumours in their tracks.

John

deleted_user 07/24/2010

HI, ANOTHER WAY TO FIND MORE INFO AND FROM THE PROFESSIONALS IS TO JOIN LAPPS AND PUT THE Q' TO
THEM. EMAIL IF YOU WANT TO JOY WHO IS HELPING RUN THE GROUP FOR MORE INFO

joyginn@btinternet.com

ALL THE BEST

deleted_user 07/26/2010

Orit, what is LAPPS?

Lifespalette 07/29/2010

JIm, I think cure is the wrong word here. My first endo, who is quickly becoming one the leading research specialist in acro with one of the largest pharmaceuticals, put it to me this way........"there is no cure, we get it under control........to cure it, we would have to be able to undo all the damage it does, which we can't. So we get it under control and keep it that way and we try to control the offshoot damage as well." Sandostatin LAR works for me.........monthly shots keep my IGF-1 levels down in the low range (last blood work came back at 109). some days are good, some days are not so good.......Last time I chatted with my original endo, she said they were making progress on the causes, but still no definitive cause or inoculation that would prevent a tumor.........the best we can hope for is more effective means to combat the beast, but right now she agrees the best course for me is the monthly shot.

jimok 07/29/2010

Thanks for yere replies,
I give myself the monthly Sandostain injection and I presume this is the norm. I read that one of the side effects of sandostatin LAR is low pulse rate, mine is around 50/min rest, is this ok? I'm 54.

How often do ye have MRIs post op, I've being having them yearly but after the last one some junior doctor put a 'no need for further MRIs' on the result note, until I'm sure my tumour is shrinking I'm going to keep pushing for a yearly MRI.

I was tryimg to read up on Lapps but seem to be blocked from their website.

I'm glad some Endos/Pharmaceuticals are interested in research in our area, maybe they can develop an early detection technique that will help future acromegaly developers.

On a lighter note, I'm a half twin and one of ye looks more like me than him, I must find a decent photo to post.
thanks
Jim

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