Diagnosed with sarcoma? Let's share

Richard, thanks for your response. In my post I meant to say I had 30 rounds of radiation in 2005 (not MRIs) as a precaution to prevent recurrence. I was completely blindsided by the Stage 4 metaststasis 15 years later. I was a very healthy, active person and had no idea this thing was growing elsewhere in my body. Follow up MRIs continued for 4 years and stopped there. I thought I was cured. I often wonder if intermittent checkups would have changed where I am now. Anyway, the folks at Dana Farber identified my mutuation early on but I will certainly ask about Tibsovo and whether that is an option for me. It sounds very promising for you which is wonderful! Pazopanib has stopped my cancer dead in its tracks for 3 years now, which is buying me some time for a cure. So I am cautiously optimistic and feel I am in good hands; however, would like to stay informed of other treatments and find support with others who are in similar situations. Up til now I am dealing with this privately among immediate family and a few friends. I’d like to think my glass is half full, living my best life as well as I can. Because of this disease, retirement found me before I found IT, which was another adjustment after 40 years of work work work but the gift of free time is pretty great so far.

Hi, thanks for the invitation to join this support group. Side effects from pazopanib have been minimal since moving to the lowest dose (primarily extreme bouts of diarrhea) three years ago. Radiation treatment side effects have caused neuropathy in my right leg beginning in the toes now up to mid thigh which has caused weakness in the muscles and my balance is off. Consequently I have trouble with stairs, hilly terrain, and walking in general. I am told that exercise is key which is not a problem for me, I am an active person and always enjoyed various forms of exercise on a consistent basis (less intense now for obvious reasons). My PT guy suggested acupuncture, I am on my 7th weekly visit and plan to continue for a while (not covered by insurance unfortunately). It is a slow process and it might not disappear, but I willing to try anything to get back to where I was before the neuropathy set in.

Hi, I was diagnosed with hyper cellular carcinoma in my liver in Sept of 2021. After checking for spread we found nothing else. In Oct the tumor was removed and it was quite large, 3-4 lbs. A biopsy was done following removal and it was determined to be a solitary fibrous tumor. Sarcoma. No further treatment was recommended. After quarterly cat scans it was found in my lower right lung and removed robotically in Oct of 2023. No further treatment but last scan in June showed 4 metastasized nodules in my left upper lung. New treatment is targeted chemo. I know this is rare but wondered if anyone had good results with this method. Thanks, MCWJR189

Hi! Newly diagnosed and scared to death. Noticed two mole like growths in pubic area saw derm years ago looked at it with their magnifying glasses said it was nothing. Went on with life, couple years ago had a full body check another derm and said nothing to worry. I’m a bigger girl don’t see the area clearly and thought get it checked again. New derm biopsy said it was scarcima in dermal layer. I have two spots and other smaller one being biopsied next week and another full body check. I’m so scared. Said I should see gyno and I scheduled that but just had ultrasound and last pap was normal. I have been fighting two bouts of diverticulitis in last year. Just don’t know what to think. My white blood cells are normal all CMP, cbc labs normal. I hurt in joints but I have lupus and APS So there is that too. Scared

@paulaquintana, I can imagine you're scared. Thank goodness your inner voice told you to be diligent and continue to get checked. As you learn more about what you're dealing with, please post an update so I can connect you with other people with a similar diagnosis. All the best with the biopsy this week.

Is it suspected that you have sarcoma in the dermal layer or carcinoma?

Hello,

I was diagnosed with an undifferentiated pleomorphic sarcoma of the heart. I had surgery to remove tumor followed by chemotherapy, however could not finish due to heart complications. I am still on immunotherapy, and am over 2 years post surgery… not sure what comes next…

@mcwjr189, do you know the name of the targeted therapy that you're on?

I haven’t started yet, waiting till my next scan on 9/24. The oncologist wants me to take Avastin and Temodar 150gm/m2

@laurenmca3, chemotherapy can play havoc on the heart. Have you heard of cardio-oncology?

Cardio-oncology offers expertise in addressing heart problems, potential or current issues during cancer treatments. At Mayo Clinic for example, the Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment.

Do you have both cancer specialist and cariologists involved in your care? How are you doing on immunotherapy?

Keytruda… every six weeks