Acromegaly Support Group

Hi Northwest,

Im sorry that you have had rotten news,just shows you, you have had radiation and there is regrowth, Prof. here in london said he didnt think this was going to be a problem because she had had RTherapy, so this of course is a worry.I am going to ask him about the new drug next week,I am away for 2 weeks, and will try and use an internet cafe when and if I get news.its so easy to say stay strong with this monster of a disease, because everyday it throws something else at you, but it surprises me every day how strong you all are.and some of the awful treatment some people have been given,I realise also how lucky we are to have nhs care, I know some people here have had some bad treatment,and I feel this is dreadful, especially when people feel so bad already, and having to fight all the time is so draining, but its all we can do, im so pleased for superstarh, what a journey, Take care northwest, I'll be thinking of you.

Hi,

I'm new to this forum and will add my journal when I have time. I think the new drug Spiegal meant is called Pasireotide or Som230. It's been developed by Novartis and as far as I know is still undergoing clinical trials but has shown promising results for patients with acromegaly who don't respond to Sandostatin (octreotide) or Somatuline (lanreotide) or cabergoline (dostinex). I belong to this category and has been trying to get pegvisomant for ages to no avail but I've just heard I might be able to try this new drug. Had surgery 3 years ago for a macroadenoma - at the time of diagnosis it was about 3 cm but a shrank a bit with injections for which I had to go private. It's now back in the cavernous sinus and radiation would be tricky because of all the nerves there.

Hi Northmaid,

Im sorry you have not been able to get Pegvisamont, this is the only drug that has brought levels back to normal, yes this was the drug id heard about, I hope you get treatment very soon,do you know anything about it, is it better than Pegvisamont, I did hear that they thought it was going to be the cure, but we live in hope.and I hope so. Take care let us know how you are doing.

Hi all,

I am a new member and I am currently in a Phase III clinical trial where we are receiving Octreotide or the new drug, Pasireotide. It is a national study sponsored by Novartis. They are still recruiting participants. You can find them by googling clinical trials pasireotide.