Cure Alveolar Soft Part Sarcoma International (iCureASPS)

It is with great sadness that I share the passing of Michelle (MJ) - She passed July 6, 2016 after a 7 year battle with ASPS. I want to thank all those who participate in this forum, it was very valuable to me through Michelle's journey, and my propensity to find out every detail possible to help her. I think the resources here extended her life. She was the first patient on the Cediranib study at NIH in September 2009. She tried numerous trials and approved drugs through the time period. Thanks again to all, Brian

Dear Brian, I am very sorry for your loss and to hear that MJ lost her life to ASPS. You have been very supportive to her trying to find a best way to deal with it. As I understand we did not have a Personal Updates topic open for her, and most of the communication was in the Сabozantinib and Cediranib clinical trials sub-forums where you graciously shared her experience with the drugs on the trials, I am sure that other ASPS patients have found that information very helpful. I am very sorry to hear that Cediranib and Cabozantinib did not work, it was a hope. Thank you for bringing a closure to it, I was thinking about you and MJ few times wondering why there is nothing posted recently.

Brian
I've been away from my phone and the forum for a few days and missed your post
We're so sorry to hear of MJs passing
Please know that we are with you as you work thru your loss. Today and always
Love
Debbie and family

Dear Brian,
I have been away from the computer for the past couple of weeks and just now read your post with the devastating news that dear MJ tragically lost her courageous seven year battle with this insidious disease on July 6th. My heart is broken for you, your precious young children, MJ's parents, and all of your family and I so deeply share the profound pain and grief which I know that you are all suffering with the tragic loss of a beloved wife, mother, daughter, and young woman who fought so courageously to Live. It was my great Hope that one of the several systemic treatments which MJ perseveringly tried would have been able to stabilize the progression of her disease and shrink her large primary tumor and other mets until a permanent cure could be found. The great courage and determination with which dear MJ fought her relentless and increasingly challenging seven year battle, and your faithful support, devotion, and love for her throughout her battle will continue to be a source of great inspiration to all of us in this ASPS Community still fighting this insidious disease as we continue to aggressively and relentlessly search for the permanent cure that tragically did not come in time to save your beloved MJ's precious young Life. Please know that dear MJ, you, and all of your family are held VERY close in my broken and aching heart, and how VERY deeply I care and share the immensity of your loss, your pain, and your grief. Each member of our ASPS Community is like family to me, and dear MJ and you will always remain a special part of our ASPS family even though MJ's difficult battle is now over and you will no longer be actively involved in our shared battle.
Reaching out to embrace you with special caring hugs, deepest sympathy, and all of my love, and deeply sharing dear MJ's devastating loss with a broken grieving heart filled with deepest sorrow,
Bonni

I am very sorry about MJ's passing, there isn't much I can say. I know MJ was on Cometriq at the same time as I was and am. My condolence to your family.

so sorry it's a painful tragedy.

Mario Arevalo