Does anyone have chondrosarcoma?

Hi there, I read your story and my husband to has chondrosarcoma in his right tibia and fibia. He has underwent I believe 5 surgeries now and even having a full knee replacement and still it has returned for the 3rd time now, he refuses to amputate his leg where the tumor is growing and after having an open biopsy to try to get as much out, since they state it's in an inoperable area it doubled the size in a little over a month and he now has had this active cancer since June and here it's January now, he's taking the same trial drug as you are, do you know if yours is currently helping or not?

How are you feeling ? Is the med helping?

I have 5 secondary dedifferentiated chondrsacoma tumours in my right humorous and left thigh/hip. Primary in tight femur removed by surgery. I have the IDH1 gene mutation and am on a clinical trial of a drug called Tibsovo. It is too early to know if it is working or not. It is usually used for leukaemia.

no she will not radiation therapy yet. after second on 22/03/24 we will go for that

@jinna78, welcome. Please note that Mayo Clinic Connect is a public forum for patients and family members to connect and support one another. I have removed the medical records from your post to protect your daughter's privacy. If you would like to seek the medical advice of Mayo Clinic experts, you can request a consult and send them her records over a secure platform. Here's how to request a medical consult http://mayocl.in/1mtmR63

As a mom, I can imagine how hard this is for you to see your daughter dealing with chrondrosarcoma. Has she already had radiation therapy after surgery or is that the next step?

My daughter (13 years) is diagnosed with Chondrosarcoma. Doctors said it was a second stage slow groving, located at her L4 vertebra, and after surgery to remove it and add a titanium cage, another five-millimeter tumor was noted in the soft tissue on the left side. It was stated that her L3 nerve was damaged during its removal. It was stated that there was no other remedy, and the remaining parts had to be radio-treated. State whether there is any other remedy for this

Hi. I know this post is old . How are you feeling? My husband has a chondrosacroma of the skull. I have been trying to connect with others too.
Thanks

I am blessed to have my tumors reviewed by the tumor boards in both Spokane and Seattle. My cancer is extremely rare. My doctor wants me to wait until the tumors are bigger before surgery as that surgery will impact my life. I actually don’t worry about it. I intend to enjoy every minute of every day. My breathing is at 99% with only one lung. Chemo and radiation are not possible.
I hope you start to feel better. Be positive and enjoy each day. God bless

@kathleenkin- Good morning once again. You have endured quite a bit and I don't blame you for putting off any further surgery until you really have to have it. Have you considered a second opinion? I think that it would be a very good idea, even if you have to travel- that is if you can.

Thank you for asking. Right now I am doing very well. I have 4 but right now they are indolent. But like you, I'm looking over my shoulder all the time for the next one. I am missing my right lower and left upper lobes. I've had 2 surgeries, chemo and radiation (proton and photon).
https://www.curesarcoma.org/patient-resources/sarcoma-subtypes/chondrosarcoma/
https://www.chordomafoundation.org/learn/diagnosing-chordoma/
https://www.hopkinsmedicine.org/health/conditions-and-diseases/sarcoma/chondrosarcoma

Mine is a very cancer. My doctors in Spokane, WA sent my tumors all around the country. All they know is that surgery is the only answer. You can only go so far with surgery. They have not found anyone else with chondrosarcoma