Thanks Stella.,I lost my femur and knee and 3/4 quadriceps to surgery 20 months ago. Although the margins were clear 3 months later PET revealed it had metastasised. Probably before the surgery. I have the IDH1 gene mutation and I went into the clinical trial available for that but it was not successful. I now have multiple inoperable tumours in my limbs hips and pelvis. I do believe that earlier detection and surgery would have been my best hope. But I was misdiagnosed. I wish you well. Richard
Hi all
we live in Oxford uk and in the Algarve Portugal. Our tale started about 2 years ago wit ha finger middle finger rh and it was broken the finger did not respond to any treatment then started to swell. first the ytried to take a biopsy without success then they decided to remove the finger and biopsy it ... with no confirmed results after 11 weeks. A lung biopsy Then a report came back that the 10 weeks later that it was a Dedifferentiated Chondrosarcoma and a DNA string ... that was 5 weeks ago with no real offer of a treatment apart from radiotherapy treatment ater tests starts in 3 weeks time... and it will be a concentrated treatment last several weeks. The Hospital is the Churchil cancer hospital in Oxford. also there are 5 autoimmune diseases to be taken inot o account. with lower than average kidney function and lung function. Female 67 in very good general health. She is my other half. of 20+ years. I also have had 2 fights with cancer Crohns and colon cancer and ileostomy 10 years and now and 2 years Prostate cancer and also being treated at the Churchill hospital and in remission. My other half's farther died at 92 from prostate cancer and her brother has had bowl cancer and prostate cancer. We are at pains as to what to do next as little or no progress in the past year seems to have come up with maybe radio treatment for her but no proven benefit. Are we missing anything ? we seem to be in the dark with no real way forward. wit hthe latest cat scan the main tumor 3.5 cm has grown 10mm in 6 months. What will be the future symptoms and wher is it going ? We are very realistic abuot it, but no fim diagnosis as such... it seems no one can help.
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Thanks Stella.,I lost my femur and knee and 3/4 quadriceps to surgery 20 months ago. Although the margins were clear 3 months later PET revealed it had metastasised. Probably before the surgery. I have the IDH1 gene mutation and I went into the clinical trial available for that but it was not successful. I now have multiple inoperable tumours in my limbs hips and pelvis. I do believe that earlier detection and surgery would have been my best hope. But I was misdiagnosed. I wish you well. Richard
Hello Richard, where are you being treated?
Chris o’Brien Lifehouse at RPA Sydney Australia
Hi all
we live in Oxford uk and in the Algarve Portugal. Our tale started about 2 years ago wit ha finger middle finger rh and it was broken the finger did not respond to any treatment then started to swell. first the ytried to take a biopsy without success then they decided to remove the finger and biopsy it ... with no confirmed results after 11 weeks. A lung biopsy Then a report came back that the 10 weeks later that it was a Dedifferentiated Chondrosarcoma and a DNA string ... that was 5 weeks ago with no real offer of a treatment apart from radiotherapy treatment ater tests starts in 3 weeks time... and it will be a concentrated treatment last several weeks. The Hospital is the Churchil cancer hospital in Oxford. also there are 5 autoimmune diseases to be taken inot o account. with lower than average kidney function and lung function. Female 67 in very good general health. She is my other half. of 20+ years. I also have had 2 fights with cancer Crohns and colon cancer and ileostomy 10 years and now and 2 years Prostate cancer and also being treated at the Churchill hospital and in remission. My other half's farther died at 92 from prostate cancer and her brother has had bowl cancer and prostate cancer. We are at pains as to what to do next as little or no progress in the past year seems to have come up with maybe radio treatment for her but no proven benefit. Are we missing anything ? we seem to be in the dark with no real way forward. wit hthe latest cat scan the main tumor 3.5 cm has grown 10mm in 6 months. What will be the future symptoms and wher is it going ? We are very realistic abuot it, but no fim diagnosis as such... it seems no one can help.