Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear ASPS Community Friends,I Hope that this finds you all having enjoyed a beautiful and relaxing summer. In the midst of the deep sorrow of yesterday's 18 year anniversary of the profoundly devastating and tragic events of September 11th, 2001, our day was brightened and our heavy hearts were ligh...

Thank you dear Debbie, Jussi's tragic loss affects us all especially hard as he had a very special and deeply valued presence in our ASPS Community through his faithful posts and gracious sharing. His death is a devastating reminder to all of us of the harsh reality of this insidious disease. Life i...

Thank you for your special post Ivan. Truly, all that love and current medical science could do were done for dear Jussi, but tragically the ravages of this evil disease overcame all of the love and medical treatments to defeat his precious body, but the disease never defeated his invincible spirit ...

Dear ASPS Community Friends, My heart is broken that yet another precious young Life has now been lost to this cruel insidious disease. Jussi proactively fought his increasingly challenging battle with greatest courage, determination, openness, dignity, and knowledge, and he deeply touched the Lives...

Dear Nih, I am so sorry for your continued suffering, and am xery Hopeful that the cause of your returning and increasing negative symptoms can be found. Based on Brittany's experience 14 years,ago of trying to wean off of her 5 months of high dose Decadron used to help control severe brain met swel...

Thank you for somehow finding the time and energy to share the additional information dear Nih. I am very grateful that you are so well researched and knowledgeable which is so critically important in this difficult battle. I Hope that everything goes well with your appointment with your 0ncpgist on...

Dear NIH, I am so grateful that you are feeling/doing better and have been able to be discharged from the hospital to rest and recover in the comfort of your own Home, and that you are receiving help from family so that you can rest. Was a definitive cause of your fever and other symptoms determined...

Thabk you for the additional information and explanation dear Debbie, but I am still confused since the impression on the June 24, 2019 scan results states that there is a "decrease in size of hepatic metatases" compared with the April 12, 2019 scans with the largest liver met decreasing f...

Dear Nhi, I am so very sorry about all that you are going through with the recent concerning symptoms and complications that you have developed. I have not posted recently as I have no personal experience with any of the new Immune Checkpoint Inhibitors, and consequently no anecdotal or knowledge ba...

Thank you dear Debbie for the shared updated information from Josh"s very good and encouraging most recent scan results. I am so very grateful that he is continuing to have a successful response to his Opdivo treatment with no new mets and shrinkage of his liver mets. Based on the reported decr...

Hello again Nhi, I know that you are understandably anxious to begin treatment of your spinal mets, but as with everything with this disease, it is vitally important to be as well researched and as knowledgeable as possible before undergoing any new treatment. As Olga and the articles that she helpf...

Dear Nhi, Thank you for the thoughtful updated information following your appointment with your oncologist.. It sounds like you and your oncologist have developed a good treatment plan and are pro-actively moving forward with it. Olga has offered some excellent information and knowledgeable insights...

Dear ASPS Community Friends, With greatest joy and relief I belatedly received the VERY best Mother's Day gift of all in Edmonton, Alberta on Friday May 24th with the VERY GOOD scan results of Brittany's 3 month Clinical Trial chest CT and abdominal/pelvic MRIs which VERY thankfully all showed conti...

Dear Nhi, As I share with you the great joy of the birth of your precious new little miracle twin babies, I also share the deep heartache and concern of your disease progression. Any of the possible causes for the disease progression that you have given are certainly possibilities. Unfortunately, as...

Dear Nhi, Happiest CONGRATULATIONS!! on the joyous arrival of your two precious little miracles baby boy and baby girl!! I know that you must be very busy being a mommy, working, and continuing your courageous ASPS battle, so I will close for now with happiest hugs, happiest thoughts, and greatest H...