Have you done anything to change your diet since your diagnosis? Would you be open to communicating with my husband as your cases are very surreal and similar in areas of this cancer.
All the choices we have to make are terrible ones. I too could not face amputation of my right leg and chose resection. . It has since metastasised to my left leg and hip and right humerus. I don’t look sick and if I am in bed I don’t even feel sick. But when I try to stand…it is all very surreal. We are having slow public deaths and there is no manual. Strength to you.
Have you done anything to change your diet since your diagnosis? Would you be open to communicating with my husband as your cases are very surreal and similar in areas of this cancer.
That's great news for you, unfortunately not everyone has the same outcomes, my husband refuses to amputate his leg, even though he knows the tumor has been growing and can spread to other areas of his body, in which it's possible it already has in his hip area he complains of achy dull pain and especially his calf where the enlarged tumor is at currently and has had it go to his lymph nodes also, age 44 now.
All the choices we have to make are terrible ones. I too could not face amputation of my right leg and chose resection. . It has since metastasised to my left leg and hip and right humerus. I don’t look sick and if I am in bed I don’t even feel sick. But when I try to stand…it is all very surreal. We are having slow public deaths and there is no manual. Strength to you.
Hey, folks. Someone asked above about other people with chondrosarcoma. I had a bone tumor in my little finger when I was 27 years old. The bone broke when something relatively light fell on it, and when it was x-rayed, they found the tumor. Because tumors in the hand are almost always benign, they diagnosed it as benign in spite of a rather ominous biopsy report (which I didn't discover until years later) and sent me on my way.
Nine years later, the same thing happened. I had a pathological fracture in the same bone while bracing my hands on a horse's neck as we went over a jump. Again, they scooped the tumor out and used bone chips from elsewhere in my body to fill the tumor in.
Three years after that-- yep, the same thing. This time they found it before I broke it because they were following me intermittently. I insisted they run imaging because that bone was hurting so much. The hand surgeon thought it was just pain from my hand being operated on repeatedly. Sure enough, the tumor was back and this time it had grown through the end of the bone into the joint space at the base of the finger. I had another surgery to remove it. I asked the hand surgeon directly if the tumor could be malignant, and he insisted it couldn't be. Then I fired him and referred myself to an oncologist with expertise in bone tumors. The oncologist was alarmed by this history and referred me to another hand surgeon, who monitored me from that point.
About a year later, imaging shows that the tumor was back. This time it was diagnosed as a chondrosarcoma, and the oncologist and hand surgeon concurred that I would need that finger and underlying bone in the palm of my hand amputated. Frankly, I was fine with that, given that the joint hurt almost all the time, even when I wasn't using my hand.
That last surgery was almost exactly 25 years ago. I'm happy to say I haven't had any more bone tumors since then. I hope this is encouraging to others who might have weird bone tumors in their hands.
That's great news for you, unfortunately not everyone has the same outcomes, my husband refuses to amputate his leg, even though he knows the tumor has been growing and can spread to other areas of his body, in which it's possible it already has in his hip area he complains of achy dull pain and especially his calf where the enlarged tumor is at currently and has had it go to his lymph nodes also, age 44 now.
Hi
Unfortunately the trial therapy did not work for me and was stopped. As the cancer metastasised I now have multiple tumours most serious my left hip and right humerus. My prognosis is grim. Sorry I can’t share better news. This is a deadly form of cancer.
That's what I'm afraid of as well, he has had chondrosarcoma since January 2021 is when he was diagnosed, it has been a concern for the cancer to get into his lymph nodes and they wanted to do another open biopsy, however he refused as he feels every time they do surgery it seems to return within a year later and last open biopsy it doubled in size when trying to remove as much as possible.
Hey, folks. Someone asked above about other people with chondrosarcoma. I had a bone tumor in my little finger when I was 27 years old. The bone broke when something relatively light fell on it, and when it was x-rayed, they found the tumor. Because tumors in the hand are almost always benign, they diagnosed it as benign in spite of a rather ominous biopsy report (which I didn't discover until years later) and sent me on my way.
Nine years later, the same thing happened. I had a pathological fracture in the same bone while bracing my hands on a horse's neck as we went over a jump. Again, they scooped the tumor out and used bone chips from elsewhere in my body to fill the tumor in.
Three years after that-- yep, the same thing. This time they found it before I broke it because they were following me intermittently. I insisted they run imaging because that bone was hurting so much. The hand surgeon thought it was just pain from my hand being operated on repeatedly. Sure enough, the tumor was back and this time it had grown through the end of the bone into the joint space at the base of the finger. I had another surgery to remove it. I asked the hand surgeon directly if the tumor could be malignant, and he insisted it couldn't be. Then I fired him and referred myself to an oncologist with expertise in bone tumors. The oncologist was alarmed by this history and referred me to another hand surgeon, who monitored me from that point.
About a year later, imaging shows that the tumor was back. This time it was diagnosed as a chondrosarcoma, and the oncologist and hand surgeon concurred that I would need that finger and underlying bone in the palm of my hand amputated. Frankly, I was fine with that, given that the joint hurt almost all the time, even when I wasn't using my hand.
That last surgery was almost exactly 25 years ago. I'm happy to say I haven't had any more bone tumors since then. I hope this is encouraging to others who might have weird bone tumors in their hands.
Hi
Unfortunately the trial therapy did not work for me and was stopped. As the cancer metastasised I now have multiple tumours most serious my left hip and right humerus. My prognosis is grim. Sorry I can’t share better news. This is a deadly form of cancer.
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.
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?
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.
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.
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I would be very happy to . My email is richard@hugo-hamman.com.
Have you done anything to change your diet since your diagnosis? Would you be open to communicating with my husband as your cases are very surreal and similar in areas of this cancer.
All the choices we have to make are terrible ones. I too could not face amputation of my right leg and chose resection. . It has since metastasised to my left leg and hip and right humerus. I don’t look sick and if I am in bed I don’t even feel sick. But when I try to stand…it is all very surreal. We are having slow public deaths and there is no manual. Strength to you.
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1 ReactionThat's great news for you, unfortunately not everyone has the same outcomes, my husband refuses to amputate his leg, even though he knows the tumor has been growing and can spread to other areas of his body, in which it's possible it already has in his hip area he complains of achy dull pain and especially his calf where the enlarged tumor is at currently and has had it go to his lymph nodes also, age 44 now.
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1 ReactionThat's what I'm afraid of as well, he has had chondrosarcoma since January 2021 is when he was diagnosed, it has been a concern for the cancer to get into his lymph nodes and they wanted to do another open biopsy, however he refused as he feels every time they do surgery it seems to return within a year later and last open biopsy it doubled in size when trying to remove as much as possible.
Hey, folks. Someone asked above about other people with chondrosarcoma. I had a bone tumor in my little finger when I was 27 years old. The bone broke when something relatively light fell on it, and when it was x-rayed, they found the tumor. Because tumors in the hand are almost always benign, they diagnosed it as benign in spite of a rather ominous biopsy report (which I didn't discover until years later) and sent me on my way.
Nine years later, the same thing happened. I had a pathological fracture in the same bone while bracing my hands on a horse's neck as we went over a jump. Again, they scooped the tumor out and used bone chips from elsewhere in my body to fill the tumor in.
Three years after that-- yep, the same thing. This time they found it before I broke it because they were following me intermittently. I insisted they run imaging because that bone was hurting so much. The hand surgeon thought it was just pain from my hand being operated on repeatedly. Sure enough, the tumor was back and this time it had grown through the end of the bone into the joint space at the base of the finger. I had another surgery to remove it. I asked the hand surgeon directly if the tumor could be malignant, and he insisted it couldn't be. Then I fired him and referred myself to an oncologist with expertise in bone tumors. The oncologist was alarmed by this history and referred me to another hand surgeon, who monitored me from that point.
About a year later, imaging shows that the tumor was back. This time it was diagnosed as a chondrosarcoma, and the oncologist and hand surgeon concurred that I would need that finger and underlying bone in the palm of my hand amputated. Frankly, I was fine with that, given that the joint hurt almost all the time, even when I wasn't using my hand.
That last surgery was almost exactly 25 years ago. I'm happy to say I haven't had any more bone tumors since then. I hope this is encouraging to others who might have weird bone tumors in their hands.
Hi
Unfortunately the trial therapy did not work for me and was stopped. As the cancer metastasised I now have multiple tumours most serious my left hip and right humerus. My prognosis is grim. Sorry I can’t share better news. This is a deadly form of cancer.
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.
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Helpful -
Hug
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