Diagnosed with sarcoma? Let's share

Give you call doctors warts, you won't regret it.He's the best Doctor I've ever had.He saved my life

I just completed 25 Proton radiation treatments at Mayo Phoenix - very little adverse affects mine tumor is in my calf the size of a Soft Ball - the treatment themselves is painless and takes any minutes - the side effects for me were some fatigue usually about 1 day a week I felt like It just wanted to nap - during the treatments no adverse effects to my skin - but I am on week 2 after treatment and I have a mild sunburn which is am treating with Aloe Vera - I used a radiation burn cream all during treatments - the saying is you might be done with Radiation but it is not done with you so expect some issue after completion - The calf feels like an internal sunburn which I find ice helps - We have a pool and the temp is currently 70 degrees and standing in the cold water really helps
The care at MAYO is best of the best - you should check in with them there are places available to stay that are very low cost right at the hospital - the difference with MAYO is that I have a full cancer Board - A surgeon, radiologist, oncologist, plastic surgeon and a Physical therapist they consult constantly on my case to determine best treatment plan for my type of cancer no chemo was recommended as studies show it is not effective where Banner Health immediately told me to start Chemo
Hope this helps and best to you and your son

I was diagnosed with dermatofibrosarcoma protuberans that was the final pathology report from Jennifer b gordetsky at the anatomic pathology laboratories

Thank you! I will take this information and utilize it if needed. I appreciate your openness.

Just to clear up my post several. Doctors at skyline said I'd bleed out because I'm on blood thinners.And the tumor was attached to my artery with blood vessels

Anyone out there being treated with doxorubicin and Tribectedin for chemo for their LMS. I start next Thursday. I am wondering what food will work and what food to stay away from.
I am also looking for some success stories.

We have just been told 24 straight weeks of chemo. We are waiting to hear back about the fox01 gene. If he is positive the chemotherapy regimen will be more aggressive, include hospital stays more frequently. My mom has had osteosarcoma for years and I had no idea about this particular gene. Let's hope it doesn't come back positive.

Thank you. Just finished radiation last week. Awaiting another CT scan next week. Had a creatine level checked today. Surgeon says I have an aneurism near the mass that might have to be dealt with before removing the LMS. Have had a meeting with our palliative care specialists, with some added pain relievers prescribed. With tylenol the Oxy and gabapentin give enough relief to be comfortable. Meeting with the surgeon on May 1.

@xanthyhogg, as a parent, this must be so hard. Has your son started chemotherapy now? How is he doing? How are YOU doing?

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