Diagnosed with sarcoma? Let's share

@debschmalbach hi deb, I had rLMS but not so lucky to get 16 yrs NED. I was diagnosed in Oct 24/ and had surgery to remove the football sized tumor. I had a baseline scan in December. In March for my first scan it showed an aggressive metastatic lesion on my liver. By the time I was ready for chemo ( biopsy, ports,cardiogram etc) the scan just before chemo showed three growing lesions. I have had the new std of care for this type lms..... Doxorubicin/6 cycles and Tribectedin 23 cycles . And have completed the doxo and 13 of the tribectedin. All my lesion have shrunk and should be ned by my next scan. The chemo is rough even if you don't have nausea. The fatigue is devastating but I still get to hold my grandchildren and kids

@debschmalbach
Hello Debi....many Sarcoma patients, even at Stage4 with metasteses, have manageable circumstances, and limited or no pain. It really depends on your own circumstance, general health, and past treatments. Chemo and radiation treatments have their own side effects, which vary greatly from person to person. I'm sure your Care Team at Mayo can give you the guidance and support you may need. Unfortunately, as you may already know, one size doesn't fit all. Do your own due diligence, weighing the pros and cons, and find what's most acceptable to you. Wishing you brighter days ahead in your life journey...❤️🌞

My name is Debi and I am 67 years old. I was originally diagnosed with retroperitoneal liposarcoma in 2008 at UNM hospital. I live in New Mexico. I underwent a resection and lived for 16 years without a reoccurance. In January 2025, I again underwent a resection for a retroperitoneal tumor where they also removed part of my small bowel and appendix. Just last week I was diagnosed with another reoccurance near my kidney but also metastisized to both of my lungs. I have been told surgery is not an option but they are looking at radiation and/or chemo to help control the growth of the tumors. The care I have received at Mayo Clinic Rochester has been incredible. I am just wondering what to expect as this disease progresses with regard to pain and fatigue. I just stopped working completely this week and want to be able to plan out some of the remainder of my life but that is hard to do without known course of this illness. I send out my most heart felt encouragement to anyone facing this diagnoses. I did have 16 years cancer free.

I have a friend diagnosed with Undifferentiated pleomorphic sarcoma involving chest and underwent Doxorubicin chemotherapy treatment.
As of now, the hospital discharged her and stopped the chemo treatment with nothing else to do. Who can I reach out for questions and any hope in this case.

@kenc I've had multiple CT scans and MRIs in '25 (some with contrast...High res?). The biopsy taken in Feb '25, sent to the Mayo clinic for confirmation. Of course there was more detail in medicaleze, not understood here. I've been told that there is no cure, but just slowing the spread of the disease. The first metastacist showed up 3 weeks ago, very small in my lung.

Greetings!
The gist of my diagnosis is that I have GIST. I find that hilarious. After five months of it being a mystery, we finally have a name for it.
I live in So Cal. I'm a massage therapist and on a good day, I do guided meditations. I just got the GIST on 1/22/26. I'm not quite sure how this all going to work out, but I'm sure my meditation skills and my acupuncturist are going to be an integral part of it.

Living in Cali, you can't help but be exposed to alternative and integrative medicine. My first parasite cleanse was wild.

I'm here trying to find my people, discuss the books, therapies, and try and keep my wits about it. Oh, and I'll probably be doing guided meditations.

@chuckeg
If you're able to travel and have available cash, Immunocine may be an option. They are located in Cancun Mexico, and require cash payment. Insurance and/or Medicare won't cover their treatments, and they are selective about patients they accept.

@chuckeg Would explore all options with the oncologist. There have been positive results with immunotherapy along with chemo therapy and the other treatments that are available.

@shukktse Perhaps seek a high resolution CT Scan. For months doctors diagnosed the lump on my thigh as hematoma. However, after the high resolution scan and the biopsy that followed, the rather large lump was diagnosed as Sarcoma cancer.

@chuckeg ,
They certainly have a hotline number to call and normally answer within a day. Check it out ast Immunocine.com