Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi everyone, I haven't updated the site much lately. I wanted to let everyone know that on December I had my 6 month check up and everything was stable and good. I was very happy to hear the news and now have my next check up on the first week of June. Lately the past two months though I have been h...

Hi Everyone!!! I have been MIA from this forum for a while and I apologize. Just wanted to let everyone know that I am doing good. Dr. Benjamin and everyone on the team have agreed and for the first time since I started this fight. We will be doing 6 months check ups instead of 3 months. This is hug...

Hola everyone!! I hope that everyone had a good Christmas and will be having a good New Years. It's been a while since I have updated everyone on this site. I have been doing really good, just had my 3 month check up on the 6th of December and I also had a Cholecystectomy on the 10th of December. Su...

This is really good news, thank you Debbie for posting this. It might help for insurance to cover it as well.

Dear Bonnie: The way the trial is set up in Md Anderson is like this, you get the combination of drugs I believe for the first 4 or 3 months and then only Medi. Which is the Durvalumab. For a total of 12 months a year, once you finish your 12 cycle they stop giving you the drug and you are put on su...

Hi Everyone: I finally finish my year of treatment on the trial and my last scan showed continue shrinking on all spots. The only difference is that the size only decrease by a few mm instead of the huge change that we have been seeing. I am doing really good health wise. I have gain so much weight ...

Dear Everyone: I recently had my 2 month check up on the first week of July, everyone on the Sarcoma clinic was very happy with the results. Everything has shrunk some with, some nodules having a considerable shrinkage with other ones just a little. Also, the color and way that my lung nodules look ...

Hi everyone; So its been a while since i update my posts, I am doing good. Remember the 6 month check up I had. Well, it didn't go well. The scan back then showed continue growth and I surpass the 25% allotment of growth in the trial( I was at 30% growth). What that means is that they had to kick me...

Hello Everyone: Info on clinical trial is as follows: A phase II multi-arm study to test the efficacy of immunotherapeutic agents in multiple sarcoma subtype #2015-1071 Study Chair-Neeta Somaiah Phase II study of Durvalumab with Tremelimumab I hope that info helps. I am going for my check up on the ...

The lazarex Foundation helps patients find a good clinical trial. They also help with lodging and transportation and other things. It takes them around a a month to get a application approved. So please apply as soon as you know you are in a clinical trial. I will update this post as soon as I deal ...

My primary tumore was in the chest wall. It was removed by a surgeon at St. Jude's Children Hospital in 2007.

Did anyone videotape the event and if someone did can it be uploaded into youtube? I wasn't able to attend and would like to know how it went please let me know.

Thank you

Mario

Its been a while since i updated this section of the forum, I have been updating in the Cometriq site. Well unfortunately Cometriq kind of stop working and I had to find a different option. My illness has progress quite some and my lung tumors have now become symptomatic. The pain has become a big p...

Dear Bonni: Is this new treatment in a clinical trial stage or an actual FDA approved Bonni. I am glad brittany is doing much better with her pain. I always struggle with pain management,because I am scare of becoming addicted to the opiates. Right now I am on 30 mg of MS cotin and have 15mg of Morp...

I believe the CEO of the company behind this drug will be speaking at the ASPS day of learning at Miami. I read one report on facebook and my understanding was that there was only 2 significant responses from ASPS patients but I think I am wrong. I will do more research on this, also I wonder if we ...