Colleen Young, Connect Director | @colleenyoung | May 26, 2024
@richard515, welcome. As you probably already know dedifferentiated chondrosarcoma is a rare type of a rare type of sarcoma. Can you share a bit more about your diagnosis? How was it discovered? What treatments are you having?
Colleen unfortunately after 5 months on Tibsovo it seems not to be working. Tumours are continuing to grow and there are new lesions now. If anyone knows of anything that might help I am very keen to know. The known arsenal seems to be empty.
Hi Richard, my husband was recently diagnosed with chondrasarcoma in his femur. We use MD Anderson in Jouston. He had part of his femur removed and replaced with a steel bone. It then metastasized to his lungs. He is about to be put on a trial called Inhibrix 109 which is an infusion. You have to qualify to be put on it. My husband also has the mutated gene which opens up other options. Dr Conley is his doctor and there are several other trials available if the Inhibrix 109 isn't successful. We have also considered the pill you are on but Dr has told us it is a good option but takes longer to see results from it. Hope that helps. Will be praying for you🙏 Sherrie Langford
Sherrie thank you for your note. My involvement in the Ivosidenib trial was terminated today. It was not working. I have checked with my oncologist for Inhibrx but I do not qualify. Unfortunately I now (today) have 15 lesions/tumours. My mobility will soon be completely compromised. It is the power of nature. There seems not to be anything more in the arsenal. If my team stumble on anything I will post it for sure. I wish you and your husband very well. Richard
There is a drug out there called Pazopanib that is hard to get but is marketed worldwide sold under the name Votrient. It treats soft tissue sarcoma. It started as a trial but the company sold it to Novartis .
You might look into that. We were told it is hard to get but is possible because the drug is still out there.
There is a drug out there called Pazopanib that is hard to get but is marketed worldwide sold under the name Votrient. It treats soft tissue sarcoma. It started as a trial but the company sold it to Novartis .
You might look into that. We were told it is hard to get but is possible because the drug is still out there.
Thanks Sherry. It has been mentioned by my guys too but I can find no mention online of use for CSC. They suggest use together with Pembrolizumab. But they are very very cautious about it and no confidence at all that it will help really. I must concede to feeling completely helpless.
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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@richard515, welcome. As you probably already know dedifferentiated chondrosarcoma is a rare type of a rare type of sarcoma. Can you share a bit more about your diagnosis? How was it discovered? What treatments are you having?
Colleen unfortunately after 5 months on Tibsovo it seems not to be working. Tumours are continuing to grow and there are new lesions now. If anyone knows of anything that might help I am very keen to know. The known arsenal seems to be empty.
Hi Richard, my husband was recently diagnosed with chondrasarcoma in his femur. We use MD Anderson in Jouston. He had part of his femur removed and replaced with a steel bone. It then metastasized to his lungs. He is about to be put on a trial called Inhibrix 109 which is an infusion. You have to qualify to be put on it. My husband also has the mutated gene which opens up other options. Dr Conley is his doctor and there are several other trials available if the Inhibrix 109 isn't successful. We have also considered the pill you are on but Dr has told us it is a good option but takes longer to see results from it. Hope that helps. Will be praying for you🙏 Sherrie Langford
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Like -
Helpful -
Hug
1 ReactionSherrie thank you for your note. My involvement in the Ivosidenib trial was terminated today. It was not working. I have checked with my oncologist for Inhibrx but I do not qualify. Unfortunately I now (today) have 15 lesions/tumours. My mobility will soon be completely compromised. It is the power of nature. There seems not to be anything more in the arsenal. If my team stumble on anything I will post it for sure. I wish you and your husband very well. Richard
-
Like -
Helpful -
Hug
1 ReactionThere is a drug out there called Pazopanib that is hard to get but is marketed worldwide sold under the name Votrient. It treats soft tissue sarcoma. It started as a trial but the company sold it to Novartis .
You might look into that. We were told it is hard to get but is possible because the drug is still out there.
Thanks Sherry. It has been mentioned by my guys too but I can find no mention online of use for CSC. They suggest use together with Pembrolizumab. But they are very very cautious about it and no confidence at all that it will help really. I must concede to feeling completely helpless.
-
Like -
Helpful -
Hug
1 ReactionHi 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.