Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Great to see your update Mario! Hope you are enjoying your life and living it to the fullest.

Very happy to see your update Ivan. Wishing you the best!

Hi Bonni,
I'm so glad to read your update. Either cediranib alone worked well for her or cediranib after the vaccine trial made a difference.

Sending you, Brittany and your family best wishes!

Arch

I'm so happy to hear about Brittnay's continued success on cediranib.
So happy for you Bonni!

Arch

Hi Ivan,

You are truly an inspiration for anyone fighting this horrible disease. I'm glad that your decision to not go the systemic treatment route and stick with aggressive surgery/cryo has been working out pretty well for you. I wish you continued success and best wishes.

Arch

Dear Amanda,
I'm so sorry to learn about the pain you are having to endure. I came to this site to see how all of you were doing and was sincerely hoping for news about continued stability. Take care and continue to stay strong..

Arch

Dear Bonni,

I'm glad to hear that Brittany continues to be on the Cediranib trial. Wishing you, Brittany and all our dear friends here a very merry christmas and a happy new year.

Regards
Arch

During Sree's last days, he often did a google search of 'what to expect when dying from lung metastasis', he wanted to know how it would be...I really hope and pray none of you go there... But if you ever want to know, I had written a detailed note of what happened in his last days, I can share it....

Dear Olga, Ivan, Bonni, Kathy, Amanda and all others here. I wanted to let you all know how much all your messages mean to me. I am very sure Sree is in a beautiful place now and is watching over our daughter and me.He was such a wonderful person with such an amazing attitude. I see a lot of him in ...

His sweet smile and warm personality will be missed for ever.... Sree never complained about anything and continued to work till the last week. Allthough he could not go to work since Feb, he continued to work from home. Even when his friends came to visit him on Wednesday, the day before he passed,...

Sree’s health had been slowly detoriating for the last year or so.We aggressively pursued all possible treatments and in spite of our best efforts, his lung tumors were progressing. The treatments with various TKIs could only slow the progression at best but nothing could stop or shrink the tumors. ...

My husband Sreedhar Ramakrishnan(Sree), passed away on Thursday May 3rd at 12:45pm at the University of Michigan Hospital at Ann Arbor. Here are the detail for the funeral. Visitation on May 5th (Saturday) from 12-1PM at: Oakhill Cemetry 255 south ave Battle Creek, MI 49017 Followed by a Hindu cerem...

I would like to add to Bonni's post, Dasatinib did keep Sree's tumors stable for a while(6 months) and then he developed resistance to it. Dasatinib had the mildest side effects of all the TKIs he has been on so far(Cediranib,Sutent, Pazopanib). Just thought it might be useful to somebody here..

Dear Amanda, Bonni and all others here at CureASPS, Wish you all peace and good health in 2012. Really hoping and praying(big time) for a cure for ASPS this year. I'm sorry for not being in touch for so long, allthough I didn't post here, you have all been in my thoughts(all the time). I tried to st...

Hi Mel, I'm sorry to hear about your sister. Regarding the skin turning yellow on Sunitinib, my husband's skin also turned very yellow when he was on sunitinib. His blood work was all in the normal range and we learnt that this can be a common side effect of the dye found in this drug. Allthough not...