Diagnosed with sarcoma? Let's share

Welcome, @gayglenn. You might be interested in this related discussion:
- Kaposi’s Sarcoma: Just want to talk https://connect.mayoclinic.org/discussion/kaposis-sarcoma/

I'm glad to hear that chemo has worked. Did your oncologist say that it is in remission? Do you continue with doxorubicin liposomal (Doxil) or are you on a treatment break right now?

Yes - chemo has been fairly effective. Currently on treatment break - next appt. scheduled for March 17th. Have not noticed any new lesions. Have a dermatologist appt. also scheduled this month. Thanks for the shout out and glad to be here. Am checking out the discussion you suggested.

Hello my name is Caroline and I am a childhood cancer survivor and now adult survivor of Sarcoma. I had Ewings Sarcoma in my right arm at age 13 yrs old. Then I had Osteosarcoma in 2005 in my right shoulder - removed shoulder- limb sparring surgery which did not spar the limb. which was caused by too much radiation. Then in 2020 I was diagnosed with UPS- Undifferentiated Pleomorphic Sarcoma. Very aggressive fast growing tumor. I maxed out the amount of chemo I could have in a lifetime and had to do immunotherapy. Then a few months later another tumor was found in the surgical margins and that had to be removed. Because of that they want me to do the immunotherapy Keytruda treatment. I had my right arm and shoulder amputated with the first surgery- fourth quarter amputation. Then a few months later the 2nd tumor was in the side of my chest wall. I started Keytruda and had some side effects. My thyroid got wiped out which we knew would happen. Then I got a rash that was all over both of my calves and would not go away for 2 years. But then it comes back and goes away and is back again. Also my eye sight got really bad. Never wore glasses now wear bifocals. I was in a car accident in March 2024 which I fractured my sternum and had a partially collapsed lung. I did not know I had a fractured because the ER said I was fine. But I was in so much pain and could not breath the doctors put me on steroids. If helped for a little while then I would run out. This went onfor months until zi made them send me a cardiothoracic surgeon and she said it was fractured. She thought I had a tumor pushing on the chest wall and that’s why it won’t heal. She wanted to do a biopsy. I said let’s wait because I am getting scanned. Anyway- no tumors. But fracture is starting to heal now. So mo metal plate with screws needed. But after the scans was Christmas and I started having more lung issues and a bad reaction to the steroids they put me on. My legs blew up and got beat red with a rash. After being down in NY we went home and they had me see a different pulmonologist and he said I have bronchiolitis and put me me on 2 antibiotics and steroids. Also diuretics. Finished medication and cough seems to get. Little better but then when off medication I get sicker. Now I went from doing martial arts to not being able to walk my dog because of falling. Then could not go up stairs with oxygen dropping into 70’s. Then they thought I caught another virus, I could not walk across the hall to the bathroom because my oxygen would drop. I finally went to the ER. I told all my doctors but they did nothing. At the ER they said I have pneumonia, a blood clot in my right leg and UTI which the UTI is healed but I have blood in my urine. They hospital doctors said I never had a virus that I inhaled something. I think it is from the air bag that broke when the old man T- Boned my car. I fractured my sternum but the hospital told me I was fine so it took me months for them to check out why my chest hurt so much. I started coughing in October 2024 my daughter had Covid and my husband and I had a virus. They got better but I got worse like I listed above. I was in the hospital from 2/4 to 2/10 and now I am on oxygen 24 hours a day.My pulmonologist thinks maybe the Keytrudia is the cause but my oncologist says no it would happen a year later not this far out, I have all the side Effects except the autoimmune diseases. My doctor is checking for the autoimmune diseases incase they missed the market. But I definitely have inflammation. How do I get rid of inflammation!!!!!! I also want this cough to stop. But my esophagus. Is 5 mm thick inflamed and my vocal cords are damaged. Did the powder from the broken air bag get in my throat and lungs and cause the damage or could it be the Keytruda that caused the damage. I don’t know. They are checking for autoimmune diseases to see if I could have that because they are not sure. I do have scarring from chemo I had as a child but the scarring has stayed almost the same. My body had adapted to getting 50% of air into my lungs my whole life. Now something had changed. Anyone else having problems with lungs and Ocygem dropping?? Hope this helps.

Hi @stewgr, You're right. Synovial sarcoma of the prostate is very rare. I'm sure this is one of those times you wish you weren't in a club of very few. At 40 it must be especially hard to accept that treatment is palliative and not curative.

While the diagnosis is unique, you may still wish to join the discussions in the Prostate Cancer support group here: https://connect.mayoclinic.org/group/prostate-cancer/

There you will find other men who have had pelvic radiation and chemo treatments to help to know what to expect.

Stew, have you started treatment? How are you doing?

Hi @chuckeg, I appreciate the details. So you've started treatment now. Was your first appointment last week the radiation simulation appointment? Have you started daily radiation now? How is it going?

I've completed 4 treatments as of today. My "walk through", simulation was 2 weeks ago, and I started radiation treatments last thursday. No side effects. Treating site with Aquafor. Have 21 more treatments to go followed by 4-6 weeks waiting for surgery.

I have a soft tissue sarcoma in my right calf about the size of a Soft Ball - I have completed 8 of 25 radiation treatments - no adverse affects - I am also in a clinical trial for pre-surgery Physical therapy - I must walk 30 minutes a day plus each week I am given a series of daily exercises - they range from increasing strength, movements, flexibility. An example is to get up from a chair unassisted - this is really strengthening my core. This week the concentration is my hips to give me more movement. This really helps me with a feeling of empowerment that I can have a positive affect on my recovery after surgery - I have to have a thigh flap taken to replace the muscle and tissue from the surgery.
I am using a radiation burn cream 2 to 3 times of day - no sign of any damage to the skin as of yet - some swelling in the leg - currently little pain and no affect on use of the leg

I am checking the days off on the calendar love coming home and putting a big X through the day - I have completed 8 of 25

That sounds great ! I had no advice during radiation. It was hard on my skin and me in general. Be glad you are in that pre surgery physical therapy!!

have you had your surgery yet - Mine is scheduled for May 5th - I was told 7 to 10 days in hospital because of the flap - not looking forward to the hospital stay