Acromegaly Support Group

Hello everyone! I hope you're all well. I met witn an Endo today and he advised against radiation. He said save that as the last option. Now I'm confused as ever. I was supposed to start radiotherapy this week but I haven't heard from my radiologist. I don't know if that's a sign that I should hold off on that... My endo also mentioned something about a trial study on a new drug that they're testing. It's from Novartis and it's very similar to octeotride. However, instead of blocking 2 receptors ,this blocks 4. I'm contemplating on joining the study and being a guinea pig. Any thoughts??

Mbritt

Hi MBritt, I was offered to take part in the study programme for a new drug (can't remember the name of it now), when I was diagnosed in Jan/February this year. I decided against it only because I would have had to repeat all the day curve tests and MRI scan etc and just didn't want to keep taking time off work to spend the day sitting around at the hospital. The only disadvantage of going on new drug studies, is that they might be double blind studies, where you and your endocrinologist doesn't know if you are being given the new trial drug or Octreotide. They would medicate you in the trial, but if you've already had Octreotide and it didn't work for you, then the 6 or 12 months whilst on the trial you wouldn't be managed to keep your levels in check.

Totally understand your dilemma regarding radiation and what to do for the best. It's amazing how the endo's have differing opinions on this. I think radiation is definitely seen as the last resort after surgery and you would still need to be managed on medication for several years, until you get the benefits from radiation.

You obviously don't want to rush into anything and make a quick decision, but also, you just want to get on with your treatment so you can start living your life normally again (or as near as normal as you can get).

Lots of luck MBritt x

Hi Shelley! I told my husband about the study and he said absolutely not. It is a double blind study and it does require a lot of your time. I can't take that many days off work.

My neurosurgeon said he strongly believes I need to undergo radiation. I've been doing research and I think the high dose radiation (1 session) is more harmful in the long run than the low-dose (5-6 weeks) treatment. The radiologist assured me that they will go below the published dosage as a precautionary measure.

I am waiting for lab results for my GH and IGF-1. My IGF-1 5 days post op was 700 and it was still high. I actually feel fine, other than some weight gain. It's my fault though I have been eating A LOT lately. Need to get back in shape lol. Hope you're well.

Mbritt

Life after the operation

I thought I would log on to see if I can add some experience to this thread. I was diagnosed with acromegaly in 2001 and had my operation to remove the tumour in 2002. The operation went well, but because my tumour was so close to the corroted artery it was not completely removed. This is fairly common and is the main reason that most post operation acromegalics are persuaded to undergo radiotherapy treatment. As my operation was a few years ago I have had to live with the consequences for a good few years now. I would be very interested to hear from other long term acromegalics to see if they have the same experience.

I felt good after the operation, I had suffered 2 years of bad headaches and eye pain as the tumour had grown upwards and was pressing on my optic nerves. So after the operation I was elated, so relieved of my symptoms and relieved that the tumour was gone. It may be different now, but radiotherapy was almost a definite secondary procedure, just to make sure the tumour would not regrow and my issue is with the radiotherapy. The pituitry gland seems to control so much of us and our bodily functions. I would definitely NOT take the radiotherapy.

Why ? the tumour is a very long term growth, it is benign and other than effecting the hormones produced by the pituitary in acromegaly by increasing the production of growth hormone is never going to be an urgent problem. The chance of a tumour regrowing after surgery is virtually nil, and the operation is an example of perfect surgery, a hole is chiselled through the back of your nose which gives access to the underside of the pituitary gland, this has a hard cup like structure which is punctured and the flacid tumour is removed, the gland tissue is much more rigid than the tumour and is usually left untroubled by the operation.

The chance of after effects after this operation is usually small as your pituitary gland returns to its normal function within a year.

However, in contrast to the precision of the operation , the radiotherapy is a blunt blunderbuss of a tool, 3 rays of low radiation are targeted at the pituitary, each ray is destructive to your brain tissue, but only upon the concentration of all three is the radiation strong enough to cause tissue destruction, which is targeted at the pituitary. It cannot be solely aimed at the remenants of the tumour, but at the whole gland, and despite the fact that the radiation is most harmful to tumour tissue, it does also affect normal tissue. In a tumour in a breast, or lungs it probably doesn't matter if there is a slight effect on surrounding tissue. But with acromegaly this is your pituitary gland, which controls testosterone (so forget a sex life afterwards) also your cortizole levels, so any subsequant problems your recovery is long and debilitating, it covers many functions of the hyperthalmus so you can't cope with stress (at all) in fact these problems multiply to a point that sometimes I wish I was back to my headaches and growing too much.

So what are your options, you could say well if my sex drive dissappears, so what, I will be alive but I have had real marital problems as my wife (despite knowing my problem) feels unloved and uncherished as I just don't have any interest. There are hormone replacements, but they don;t work. I have tried them all,testosterone patches, cream, tablets, injections, nebido seems to be the best it is a 3 monthly injection.

I felt good after the operation, but have felt tired, not just tired but really really tired all the time after the radiotherapy, it really messes up your head. Don't think that 3 rays of radiation surging through your brain every day for 6 weeks will not effect your brain. I guarantee it will, it will effect your brain, the way you think, feel, everything will never be the same.

I suppose all I am saying is that you need the operation, but think twice, thrice about the radiotherapy. You will probably have been told that your tumour probably started in puberty, it is very slow growing, now you have had your operation you know you have this problem and mri screening every 3 years will determine whether your tumour is regrowing and in the unlikely event that it starts, that may be the time to think about radiotherapy as it will deal with small tumours perfectly well. Don't just amble into the radiotherapy as it is what is suggested to you is "normal" as there will be nothing normal about your life after radiotherapy.

You have 6 months between operation and radiotherapy, so judge how you feel in this period. If you feel good then forget the radiotherapy. just go for regular (3 year) mri scans.