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Diagnosed with sarcoma? Let's share
Sarcoma | Last Active: 17 hours ago | Replies (845)Comment receiving replies
Hello. I have 6 dedifferentiated chondrosarcoma lesions in my left hip femur and ankle. And another in the right humerus. The primary was in my right femur. I lost my femur, knee and 3 quads in surgery. I had me tumour tested for the IDH1 gen ed mutation by FoundaOne. It was positive. I have been on a therapy named Tibsovo for 105 days now. My PET scan 2 weeks ago showed early signs that tumour growth had slowed significantly and that the tumour in my arm had actually reduced a little in size. It is all uncertain but does show promise. It might be worthwhile being checked for the IDH1 mutation. The therapy has enjoyed a lot of success for AML and bile duct cancer. I am happy to provide more information. My name is Richard..
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Richard, thanks for your response. In my post I meant to say I had 30 rounds of radiation in 2005 (not MRIs) as a precaution to prevent recurrence. I was completely blindsided by the Stage 4 metaststasis 15 years later. I was a very healthy, active person and had no idea this thing was growing elsewhere in my body. Follow up MRIs continued for 4 years and stopped there. I thought I was cured. I often wonder if intermittent checkups would have changed where I am now. Anyway, the folks at Dana Farber identified my mutuation early on but I will certainly ask about Tibsovo and whether that is an option for me. It sounds very promising for you which is wonderful! Pazopanib has stopped my cancer dead in its tracks for 3 years now, which is buying me some time for a cure. So I am cautiously optimistic and feel I am in good hands; however, would like to stay informed of other treatments and find support with others who are in similar situations. Up til now I am dealing with this privately among immediate family and a few friends. I’d like to think my glass is half full, living my best life as well as I can. Because of this disease, retirement found me before I found IT, which was another adjustment after 40 years of work work work but the gift of free time is pretty great so far.