Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi Debbie Not at all. Wow! I can't even begin to envisage how laser surgery is done and how long it would take to remove 140 tumours. I get the feeling I am in the too hard basket with so many lesions in my lungs and liver. Perhaps we do not have this surgery here or perhaps I am not the best candid...

Thanks to Bonnie, Ivan and Amanda for your posts. You provide a lot of advice I will begin to take on board. They also provide me with a number of questions to ask my doctor, especially about the availability of different drugs and procedures. I have started taking Sunitinib and so far so good about...

Hi Debbie Sorry for my late reply. When my lump was found to be a tumour we were living in Egypt. The biopsy and pathology were done in a laboratory connected with a Centre specializing in breast cancer. Indeed, they got it wrong but I don't hold it against them. They had to work fast in a city of 1...

Hi Debbie

I guess my doctor's plan is to try Sunitinib and see what happens. I am not aware of anything else being considered.

Cheers
Amanda

Thanks again, Debbie, for taking the time to respond. I have that size of lesions in both my lungs and liver. Also I forgot to say. I had an whole body MRI done in January when the primary tumour was discovered but none specifically for the brain. It is not near the spine but it does encroach on the...

Hi Debbie No worries about answering your questions. I was living in Egypt until the end of June and then moved back to NZ. I taught at an International School and managed to work two weeks and then have a week off for chemo. The hope was that there'd be some regression and the tumour which was cons...

Thank you Olga and Debbie for replying so soon. Sounds like you have a wealth of knowledge and I will gain a lot of insight from being a member of this forum. ASPS is so rare in New Zealand that my oncologist had to look up information on the Internet and there is only one sarcoma specialist in the ...

Hello all Another Amanda here. I have known I have cancer for 7 months but for 5 of those months I believed my primary tumour was a neuroendocrine tumour. Now, after a very thorough histology in another country, it is asps. I have know idea how long it is has been growing on my gluteus maximus muscl...