Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Bonnie, Debbie, and Olga Thank you for your opinions on my thyroid cancer. Re: Debbie, yes the thyroid cancer was papillary carcinoma. They did a complete thyroidectomy. I will certainly print out those two articles you sent and run them by my doctors. That would be encouraging if we found out the t...

Dear Rachel, I am so sorry for your ASPS diagnosis, but am very grateful that you found your way to this CureASPS site and that you have thoughtfully reached out to graciously share your Sutent treatment experience. Since ASPS is such an extremely rare disease, shared researched and anecdotal exper...

Rachel, thank you for sharing your experience, it is a very valuable input. I have a question re. cardiac problems - did you have a cardiac MRI? Ivan's heart metastasis looked like the mild thickening on the CT scan and was not recognized on the early stage by the cardiogram. Hi Olga, I did not hav...

Hi Debbie, In regards to the ketogenic diet: yes that was my thought too. Since cancer thrives on glucose/sugar to cut that out. I had a scan after I tried the ketogenic diet for a month. Some of my tumors did shrink (I don't have specific numbers for you off the top of my head). Not sure if I can c...

Hi All. My name is Rachel. I was diagnosed with ASPS about 4 years ago. Mets to lungs, never found primary. I was on Sutent from March 2014 to January of 2018. Sutent held my cancer stable and we even saw a little bit of shrinkage over the 4 years. Unfortunately, I reached intolerability with the Su...