Diagnosed with sarcoma? Let's share

Hi pammyrose66 - my tumor was by my small intestine, removed with clean margins but high mitotic rate. I’ve been on imatinib since Jan 2026, and I’m still adjusting. Constant fatigue, nausea (controlled with zofran), brain fog, foot cramps and substantial hair thinning/loss are my side effects. My days don’t look anything like those pre-Imatinib, but I get by. How are you doing?

@fluttergord
Hello, sorry to hear about your diagnosis. I too am 67 and was recently diagnosed with epitheiold sarcoma (they think) and similar to your timetable you mentioned. Mine started with an aggressive growing tumor in my upper thigh that metastasized to lymph nodes, and lung.
I did 10 rounds of radiation that did wonders on the tumor in my upper thigh, now I am starting another 10 rounds focused my my pelvic area. There is a major lymph node called the lilac in the groin area they are focusing on to reduce the swelling in my leg.
Also, just completed 6 rounds of chemo, gemcitabine & docetaxel, only to find out the cancer actually grew during this period. If they recommend these 2 chemo, just beware that the efficacy on sarcoma is less than 30%. Hoping my experience is of value. Wishing you the best. Joe

@fluttergord
Hello, sorry to hear about your diagnosis. I too am 67 and was recently diagnosed with epitheiold sarcoma (they think) and similar to your timetable you mentioned. Mine started with an aggressive growing tumor in my upper thigh that metastasized to lymph nodes, and lung.
I did 10 rounds of radiation that did wonders on the tumor in my upper thigh, now I am starting another 10 rounds focused my my pelvic area. There is a major lymph node called the lilac in the groin area they are focusing on to reduce the swelling in my leg.
Also, just completed 6 rounds of chemo, gemcitabine & docetaxel, only to find out the cancer actually grew during this period. If they recommend these 2 chemo, just beware that the efficacy on sarcoma is less than 30%. Hoping my experience is of value. Wishing you the best. Joe

Dear all,

As long-term survivor of an MPNST, I am suffering too much from late side effects of radiotherapy. For those who have other choices of treatment, I recommend do not use the radiation for the cure of cancer. The side-effects can arrive 20 years later as a "surprise" that nobody is waiting.

It's like trading diseases, like paying a very high price for survival. You exchange a deadly disease for a cure with terrible daily pain, incurable, agonizing nerve problems, and a significant lack of quality of life. For those young people who, like me, have gone through sarcoma and may live for many decades, they should carefully consider treatments with their doctors. For older people, it may not make much difference. For younger people, it's certain that they will reach 40 or earlier with significant physical impairments thanks to radiotherapy. Doctors, in most cases, don't inform you. And even the most recent radiotherapy treatments seem to significantly compromise quality of life. All this is especially true in sarcomas at an initial stage.
I want to share my testimony so that young people like me don't have to go through the terrible suffering I'm going through. Thank you and best wishes for good health to all.

Regards.

@schwannoma What other options did you have? Chemo only?