Cure Alveolar Soft Part Sarcoma International (iCureASPS)

BRIEF UPDATE: I have remained on the AZD2171 trial since I last posted, I will summarise my results and side-effects. Results The last two-monthly scan (I got the results about a month ago) showed a 'stable' disease. I pushed the oncologist on this as sometimes a stable disease can actually show sma...

Hello everyone, I may not be well known by some on this board, and maybe forgotten by others, as it has been a long time since I have posted here. I would like to fill everyone in on the success I have been fortuunate enough to have with this new clinical trial. I am based in London at the Royal Mar...

Hello everyone, I may not be well known by some on this board, and maybe forgotten by others, as it has been a long time since I have posted here. I would like to fill everyone in on the success I have been fortuunate enough to have with this new clinical trial. I am based in London at the Royal Mar...

Dear Olga, I have not started on the trial yet. Yes it works throughout the bloodstream so it if proves to be successful in the brain it would work just as well throughout the body. I will let people know how I get on, posting every now and again on this thread, and will ask Prof. Judson about the d...

PS my e-mail address is; mavsyboy@gmail.com

NEW DRUG ALERT!!! This drug works the same as PXD101 ie. it prevents or slows the production of new blood vessels that 'feed' the tumor, thereby slowing/stoppiing/reversing tumor growth. It has shown to have a positive effect in a number of trials before and as my Doc (Prof. Ian Judson, London) tell...

Sorry it has taken me so long to check the site and reply. I stopped the course of PXD101 a while ago now (maybe 8-9 months), this was mainly due to the appearance of brain mets. But to answer the comments and questions regarding the drug it is true that this type of drug is effective with sarcomas,...

Olga, thanks for the questions. By assymtomatic I am presuming it means showing no symptoms. With my first met (in march/april this year) I was going dizzy, for no reason. Often when I stood up, which is understandeble, but occasionaly for seemingly no reason, for example when I would be walking dow...

This is the name of a drug that I and one other ASPS patient have been treated with over here in the UK. It has given promising results in both of us, stopping the growth for 12-18 months. I was only on it for 8 months and came off it for a break a couple of months ago, with a view to starting again...

I have twice gone through brain surgery in the last year, each time one tumor was resected, from either side of my head. The mets were small, 1cm-0.5cm in diameter, however I suffered from dizzyness and headaches respectively. I also had a short time on steroids for both treatments. If anyone is fac...