Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello everyone. I recently started the immunotherapy at NIH. I have only had two sessions and they explained that it usually takes at least five before they know if it is working. The cedirinib was marginal - some side effects and limited utility. Dr. Chen recommended that I try the immunotherapy an...

Hi everyone. Thought I ought to reply since I haven't written in quite a while. I contacted one of the doctors who did the cryoblation but he didn't think he would be able to do it and suggested Dr. Rolle, who had already said my mets were too large for him. So I started the clinical trial at NIH - ...

Bonni, I forgot to say yesterday how happy I am that Brittany is doing so well on cedirinib. At NIH they have some people who have been on it for three years plus but not the almost seven for Brittany. Please give her my best. No doctor I even spoke to has even mentioned any treatment other than med...

Thx Debbie, Bonni and Olga. Dr. Rolle initially said he could perform his surgery but then said he couldn't. The radiologist here said there was no increase but Dr.Rolle said there was. I was probably being a pain in trying to schedule the surgery (I was still working then) and I've always wondered ...

Hello, This is Larry from Buffalo, diagnosed August 2011. Lungs mets reasonably stable. I had contacted Dr. Rolle who said he could operate but then changed his mind for reasons that I never understood. There has been some progression but very minor and nothing that interferes with my life - yet. I ...

Its been a while since I wrote (forgot user name and password and was finally able to retrieve them). What is the difference between Dr. Rolle's surgery and the other procedure I've read about that is done over here? Are they interchangeable or do they accomplish different things? Its been over 10 m...

One thing I forgot to ask: If I were to have the surgery in Germany, does anyone know what the likelihood is of more mets showing up after the surgery? I would hate to spend the money going to germany, have the surgery and then find that in six months, more mets have appeared. Does anyone know if th...

Thanks again everyone. It is so good to hear from people who have experienced this. I was supposed to meet with the oncologist Wednesday but he was speaking somewhere so I only talked to his NP. We had sent the onc information about Dr. Rolle but the NP was unfamiliar with it. They want me to start ...

Hello and thanks for your support. The surgery apparently went well, tho it took between six and eight hours. I cannot believe the progress I've made in the four days since the operation. Dr. McGrath was pleased and altho the main tumor was large and he had to do some bone reconstruction, he did not...

Thanks Amanda. I have 20 mets in both lungs, all apparantly pretty small. I went for a needle biopsy Friday and the doc was having a difficult time hitting one. Assuming it is asps (there might be a small chance its not, but that seems like a lot to hope for), the question is then what to do. I coul...

This is Larry from Buffalo and I want to thank all of you who responded to Jenn's posting. I would have gotten on sooner but it seems like the last two weeks all have been doing is going from one appointment to another, one test to another, etc. My surgery is scheduled for Tuesday - no question the ...