Diagnosed with sarcoma? Let's share

In 2005 I had osteosarcoma in my right shoulder and scapular they did not do radiation just chemotherapy and surgery. The reason they did not do radiation therapy was I had gotten 5ooo rods twice aday at Sloan and Kettering Cancer hospital and they burned my skin. I needed a skin graft. But back then they did not know how much radiation to give patients. So then the radiation caused me to get two other cancers. I had Osteo sarcoma in 2005 undifferentiated pleomorphici sarcoma in 2020. I ended up having my right arm amputated. It ended up being the best thing I ever did because I had so many problems with it. When they did the surgery for the osteosarcoma, it was called a limb bearing surgery. It really didn’t spare my arm, and it dying kind of slowly with lymphedema and I lost feeling in it. Maxed out the Maine market have a lifetime. So now I end up having immunotherapy for the UPS cancer. I am in remission for 3 1/2 years. But from the chemo I had as a child it caused scarring on my lung. I was in a car accident and some older gentleman hit my car going through a red light and I fractured my sternum. The air bag broke and went into my lungs and has been causing me breathing problems. I end up getting pneumonia, because I couldn’t walk. I got a blood clot in my leg and from the cough not a UTI. I’m on oxygen for 24 hours a day. If it doesn’t get better talking about maybe having a transplant. I’m hoping that it will get better. I didn’t fight all these years just to have to go through more stuff. You should be OK with the treatment but just make sure they don’t burn your skin with the radiation. My friend went to breast cancer treatment and they gave her too much radiation and burn her skin now she’s gotta get a skin graft done. But I have not seen this happen to anybody in many years since I was a young child. So make sure you pay attention to it if it seems like its skins getting burnt make sure you tell them that and they stop it some of the treatments will make you a little nauseous and sick to your stomach but if you have anti-nausea medication you should be OK. The main thing is to make sure you stay hydrated at all times because if your not it will mess up your electrolytes. Also just eat whatever you can because if you lose too much weight then you have no energy to fight and you feel weak. Also know is no time for a diet. You can watch your sugar intake because sugar feeds tumors. Keep in in the natural form not man made. I also took a supplement callled Juice Plus and my doctor thought it would interfere with the chemo and I said if it did, I would stop it, but if it doesn’t, then I’m gonna keep taking it. It can’t be regular when I was on pain medication, but it’s also antioxidants and vital chemicals. The chemo kills everything I still wanted to have my supplement. When I had to go impatient for really strong chemo, they asked me what I was doing because they couldn’t believe how quickly I recuperated and I told him it was Juice Plus and they told me to keep doing what I’m doing because it was working. So that worked for me. I don’t know if it will work for you, but it’s worth a try. I think this is what got me through cancer four times. If I can be any help to you please feel free to ask. Good luck to you. From Caroline

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I'd like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

May 2025 I've been "lurking" here trying to figure out what I can contribute. I was diagnosed with an undifferentiated pleomorphic sarcoma (UPS) Sept 2024. I have my primary care at UCSF. I encourage everyone with a sarcoma to go to a specialty facility. I've been fortunate enough to have RT (Radiation Therapy) locally, as well as local physical therapy. I suppose I can answer some basic Qs, but I hope you have an open relationship with your oncologist.
My Sarcoma was radiation induced from a previous radiation cancer treatment in 2005. (Breast XCR). Good luck and Good Vibes to everyone. I happen to be a Christian, so God bless anyone that is dealing with xcr.

My daughter, 24, has/had chondrosarcoma. It started as chondritis in her left knee and evolved to chondrosarcoma. Her knee has been removed (limb-saving surgery). The cancer has metastasized to her lung. The tumor was removed in February 2025. Her cancer was very aggressive. Everything happened in the last two years. Our path forward is "detect and destroy". Next CT scan in June. I need to know everything about this cancer, but I am so afraid to read anything.....

Hello
My name is Adi, I am from Europe and I have been diagnosed with Classic Kaposi Sarcoma, HIV negative. I would like to know more about the onset, evolution and treatment of these rare diseases.
Thank you

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 had chondrosarcoma in 2002 for two weeks. A lump on my sternum was growing, lump removed, lump was sarcoma growing in rib. pieces of 3 ribs and pieces of sternum removed, gore-tex patch sown on. no sign or symptoms since. last CAT scan was 2 weeks ago.
all I have to pass on is get that lump or bump that lasts more than a week looked at. My tumor was grade 1, very early.