Acromegaly Support Group

Hiand welcome to the Forum, sorry that you have to behere, but its a great place to share knowledge, my daughter has also had 2 surgeries, to debulk, there was large remnant left, and had external beam radiotherapy, tumour shrunk a little in the first three months after RT, tried lanreotide, then octreotide(sandostatin) levels never went down, even though she had Radiotherapy,8 weeks ago, she was switched to Pegvisamont, IGF-1 levels now normal, for the moment still on sandostatin injection every 3 weeks, plus 60mg Pegvisamont weekly, she still has bad days, but were hoping these will become less with time.I Hope this is one of many answers. Take care

Thank you for the response. Interesting approach on the Pegvisamont and Sandostatin. It is my understanding that these 2 drugs work differently and I didn't know that combining them was an option. Has she had any unexpected side effects from the 2 drugs together? We are also considering increasing the interval of Sandostatin to 3 wks if I do not see results from Somatuline. Is the radiotherapy a series of treatments over a long time frame? Great to hear of positive results w/ the meds! I really did not think that Sandostatin's effectiveness would decrease so early in the ballgame. I'm anxious to discuss Pegvisamont w/ my endo.

Welcome to the group! There are at least 4 of us in the group who are in Texas, so we're not so far away. I haven't done meds, so can't address your question. However, you came to the right place for support. Keep us posted on how you are doing.

Hi,originally she took lanreotide once a month, for about a year, her levels didnt come down very much, so they changed her to octreotide, this hasnt helped either, I started taking Pegvisamont 60mg a week, 8 weeks ago, have just had bloods tested and the IGF-1 is normal, also tumour shrunk a little,I think with Pegvisamont there is a small risk of the tumour growing, but because she has had Radiotherapy, he doesnt think this will be a problem, but I have heard that it can happen.she has been kept on octreotide dostinex and pegvisamont for the time being, Dostinex is now being weaned off slowly.next maybe octreotide. side effects since starting Pegvisamont,flu like symptoms, stuffy nose,very tired,periods of feeling down, hopefully these will get better,Hope this helps Good luck with everything.Funny you get the drug that brings down the levels and everything on paper is good, but you still feel like ....

Hi, I switched from Sandostatin LAR (max dose) and Somutaline Depot (max dose).

At the time of the switch my levels were still higher than normal, four months later they were under control. I liked the idea that I can self-inject the medication. I had some issues with my glucose tolerance and the injection itself (the needle is pretty big). Now I am used to it.

But I must say that I don't feel great two days after injection (more fatigued, sometimes upset stomach). Nut otherwise I am pretty happy that I had switched.

Hope it's helpful.

I'm not switching, but planning to start fairly soon on the monthly Somatuline (lanreotide). The endocrinologist chose this over the Sandostatin as it is easier to administer. (The plan is that a hospital endocrine nurse will train staff at my GP's to administer it monthly after the first injection).

I had my transsphenoidal adenectomy in March 2009, and my IGF-1 and GH are still a bit high (though far better than they were.) I am hoping the lanreotide will do the trick.

John

I went from Sandostatin to Somatuline to Pegvisamont. The growth hormone trended down and bit then stopped. Pegvisamont helped for about a year and now the hormone is trending upward and there is growth in the tumour. Not quite sure where we go from here. You are correct, there is no one size fits all and you have to figure out what will work for you.

First, yes, there are differences in our treatment plans and how we react. In my situation, I had switched from Sandostatin (Octreotide) to Somatuline (Lanreotide)- other than having to "stab" myself with a slightly smaller syringe, the medication was not at all helpful. I went back on the Sandostatin and my endo. added (generic) Parlodel, which the literature states is particularly effective in cases of Prolactinoma- which I didn't have, my expectations were low for this reason. However, two little (2.5 mg)pills twice a day, in addition to the Sandostatin, have worked very well in stabilizing me, for well over 6 months (other than one month following a little spluttering out of the med, when the nurse inadvertently removed the needle too soon). I also read that Pegvisimont sometimes causes regrowth/growth of the tumor (I've not been on this, myself). I advise you to request a dopamine agonist, in addition to your injections- it is a very low dose and may be all you need.

Best of luck!