Acromegaly Support Group

Hi Mcbrit,

My daughter 29yrs had 2 surgeries and external beam radiotherapy,thesaid this was the gentlest therapy because of the optic chiasm, but I have heard proton beam is also good, you could find out about the two from your team, I also hear cyberknife is good for our type of tumour.we have just got this machine in UK at a few centres, but unfortunately it isnt on the NHS, only private health care will cover it, and its £25 thousand pounds for the treatment so im told. Take care and let us know how you get on.

Hi Spiegal!

Thanks for your reply. Hope your daughter's doing ok. What side effects did your daughter have when she had radiotherapy? Are her hormone levels controlled now? Hope all's well with you.

Mbritt

Hi,

I have had Gamma-Knife a little over a year ago, and so far, my pituitary gland seems to be working fine. My pituitary tumor is still huge, but with a necrosis spot on it now.. That means that it is slowly starting to die.. The tumor that is. I was told that it could take a few years for the tumor to die completely. And it is also possible that my pituitary gland could die too. But it's only a possibility.. If that happends, i'm told not to worry. Hormone replacement is available.. Another thing, when we have pituitary surgery, there is as much risks to damage the pituitary gland as radiation. The reason is because the pituitary gland is very small ( pea size ). I had a choice between Radiation therapy and Gamma-knife, and i chose Gamma-knife. CoolCat

Hi again, she didnt have any problems really, she lost a lttle square patch of hair on the fringe part, it grew back very quickly, after about three weeks, she started to feel tired, but that was all, she used to have a nap in the afternoon, this soon passed, its 2 years down theline now, it is slowly shrinking, but they did say she would need hormone replacement eventually.her levels were not coming down that good, she had lanreotide and octreotide plus dostinex, these failed to work for her, she went on Pegvisamont 3 months ago, after 6 weeks on this medication her IGF-1 came back normal, the Prof. was so pleased and we were elated, so even after radiation and the drugs levels were not good, hopefully this drug will keep working for her, while radiation does its job, but it is a very slow proces, Gamma knife I think works much qucker. Take care

Thanks Coolcat and Spiegal! I'll talk to my doctors some more about this. I think what made me nervous was the resident that I met with prior to the doctor. He was new and told me with radiation they usually aim at the pit gland, to kill it. I said that doesnt sound right. When the doc came, I asked him again and gave me a totally different answer. Am I the only one who's had problems with residents??? LOL! Take care everyone!

Hi, Go for it! and when you have each treatment just go into a slow breathing meditation!!! and think positive!! feel youslf with a healng light and a rainbow, reminding yourself that it is all for the best for you and your body.
I had the R.T. last march/april and had it with:- TRUST!!! Good luck!!

Thanks Orit! How are you doing after your radiation treatment? Hope all's well!

I'm having the same dilemma about whether to have radiotherapy. I had surgery three years ago and now there's a regrowth in the cavernous sinus. I don't respond to octreotide or lanreotide (Somatuline) and here in the UK you don't get Pegvisomant unless you have had radiotherapy - at least that's what my endo says. I guess it's too expensive in the long run. I wonder if anyone has had radiotherapy or gamma knife treatment for cavernous sinus invasion. A gamma knife specialist I talked to recently said that there is a small risk (2 %) of the nerves that run through becoming damaged causing permanent facial pain. It would probably be the same with external beam radiotherapy. I'm hoping that the new drugs that are currently in clinical trials (e.g. SOM230) will work and will be cheaper so that it's not so hard to access them.

Hi Northmaid, My daughter had radiotherapy, octreotide and lanreotide didnt work for her, also Dostinex. I think they keep back Pegvisamont until they have tried all other meds because 1 its very expensive and 2 if you havnt had radiotherapy the tumour can grow again,(small%) it can also grow again even if you have had radiotherapy again small % I think they too are learning all the time with Acro, Some people take pegvisamont on a daily basis, 1 injection every day, but her Prof. wants her to take her dose 60mg once a week, he feels this is a better way. different doctors have different ideas.I also think they decide what radiotherpy to give according to what radiation machines that particular hospital has.If you have private insurance do your homeowork, and you can decide what therapy ad where. Take care

Hi Spiegal, I'm sure you are right that the reason they don't give Pegvisomant until you've had radiation is that otherwise it might start growing again. I keep forgetting that as I'm anxious to get my IGF-1 down quickly. On the other hand I'm trying to find out as much as possible about the risks before I decide about radiation. So far, whenever there has been a small risk of something going wrong it's happened to me, so I'm becoming more careful. My hospital doesn't have these facilities but I've seen the prof. in charge of external beam radiotherapy at the Marsden where I 've recently been treated for BC. He said the same that it's the gentlest therapy. The gamma knife specialist seemed a bit cautious because of possible damage to the nerves and thought I should discuss it with my neurosurgeon first. I do have private insurance but there's a limit how much they pay for. I used it for my surgery because I didn't want to have surgery at my local hospital and my PCT refused to allow me to go anywhere else. This was 3 years ago - now of course we have the choice and as I have other health issues I need to save the allowance. I've checked about cyberknife but the private insurance doesn't pay for it and the gamma knife specialist said there's no difference - that's his view anyway. Hope the Peg continues to work for your daughter - how is her facial pain now?