Anyone have dedifferentiated chondrosarcoma? What treatment?

@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.

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.

Has anyone been diagnosed with dedifferentiated chondrosarcoma of the hip and how has it been treated so far?

Hello. My name is Richard. I have dedifferentiated chondrosarcoma of the left hip. Diagnosed 20 months ago. Because it has metastasised I have multiple tumours in my skeleton. As I understand the situation surgery as soon as possible is the only way to stop DC. If I were you I would be getting radical surgery and a hip replacement as soon as possible. There are no known success fuel treatments for this disease . My best advice is do not delay. Best of luck. Happy to answer any more specific questions.

Hi Richat, my name is Stella. I have already had 2 surgeries on my leg, but I have a new recurrence in the same place. There is currently a clinical trial for a drug, it is also available at the Mayo Clinic.

@smk25, will you be taking part in the clinical trial?