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.
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.
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
Connect
Connect
Like
Helpful
Hug
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.
-
Like -
Helpful -
Hug
1 ReactionHi 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?
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