Diagnosed with sarcoma? Let's share

Your mom must have had an oncologist with the incident in 2023. This is the person to consult with. If not an active relationship, you need to find a sarcoma specialist ASAP at the sarcoma center. I don't think your mom has told you everything. She should have been getting MRI or CT scans every three months to get the best chance at survival. I don't intend to be harsh but sarcoma is never a one and done.

@colleenyoung There is a wonderful support group for GIST patients. It's called LifeRaft. I recommend that those with Gist get with them. I have lms but before I got my biopsy results I thought it was GIST. Those folks literally held me together while i waited 21 days for my results. The folks I met there still check up on me.

@sagan7 hi. I have it too.

Dears,
I was diagnosed with Osteosarcoma in my left elbow 4 years ago. It affected my ulna which I had an operation and replace it with a prosthesis. After several scans, one month ago it showed that my Radius has been infected which had an operation to clean it.

Previously I followed chemo treatment for 4 sessions which showed only 20% efficacy.

Can you please help find solution for my case because the surgeon is suggesting for an amputation.

Best Regards
Richard

@richardlion
Hello Richard.....surgeons like to cut, that's their specialty and that's what they offer. If possible, find a Radiation Oncologist for a consultation to see if stereotactic radiation is an option in your case. Hopefully, amputation is the last choice in your case.

@ctflyr
thank you for your suggestion. I shall check possibility.

@scrowe200
My husband just completed surgery to remove a 6" UPS in his brachial plexus. 12-hour surgery at MD Anderson with 5 teams of surgeons. Prior to surgery, he had 25 greys of radiation to kill the tumor. The pathology report came back with the tumor as 90% dead. It was well encased but due to location, zero margins. He will have CT every 3 months for next year and then every four months for the 2-5 years.
When he was first diagnosed with the UPS, he was accepted and enrolled in a Phase II Study called Apollo which included: Neoadjuvant Atezolizumab with Dozorubicin, Concurrent Atezolizumab with Pre-operative Radiation Therapy and Adjuvant Atezolizumab in Patients with High Risk Surgically Resectable Extremity and Truncal Soft Tissue Sarcoma. But unfortunately, after just the first treatment, his tumor doubled in size over 3 weeks. He immediately elected out of the trial and pivoted to radiation. Chemo tends not have much success for this type of cancer and we were talked into it by both the Vanderbilt and MD Anderson team. It is the recipe they like to try first. Both wish we had trusted our research and done radiation and then surgery. The delay caused the tumor to grow so much that he now has very little use of his right arm. Nerve damage by the tumor. Anyway, he is now doing Physical therapy and continuing immunotherapy with Pembrolizumab aka Keytruda drug which btw is billed to the insurance company for $35k each shot. He will have 18 total shots. Lots of side effects so I'm monitoring him closely.

My son has a malignant triton tumor, and he is starting chemo today. We are pushing to get him radiation also. The surgical resection had to happen first, because the tumor was so large. They got the whole tumor March 11, but no negative margins. It grew from his femoral nerve, and his pelvic CT shows possible residual disease or regrowth already. This tumor is also often unresponsive to chemotherapy. But he’s 22, and we’re hoping he responds.