LONG TERM SARCOMA SURVIVORS WANTED

My name is Dawn, I am 45 years old and have had desmoid fibromatosis for 22 years. I unfortunately was operated on several times which made mine aggressive. I had severe chemo which only stabilized mine. Unfortunately I am dealing with damage from the chemo years later. I go to MDAnderson for ongoing images yearly sometimes 2years. I have had to stay on opiates for pain. I have been told I would have to do chemo again should mine decide to start growing again. My two chemos were so aggressive I couldn’t receive my last treatment. I have severe chemo brain I forget everything. The damage is horrible. I have lymademia, my veins are shot and have a shortage as to where they can do blood draws. My local GA oncologist informed me that taking blood from my power port would damage it. I have found that it’s expensive for them to use my port for blood draws every 4-6 months. But they want to flush it every 3 months?!?!?! So frustrating!!!!! Who can you get an honest answer about it????

Hi Katy, I am in remission of having Ewing sarcoma since 1985. Because of people like me that have come a long way with studying what to do with Ewing sarcoma know most people they have the diagnosis of Ewing sarcoma can live a long life, so I think you’ll be fine, unfortunately for me they gave me too much chemo and too much radiation which caused me to keep getting other tumors in life. I end up getting my fourth tumor when Covid came out in 2020 and had to have my right arm amputated, so I just finished my immunotherapy treatment because I can’t do chemotherapy anymore since they maxed out the amount chemo I can I have an a lifetime , but this this is all because they had no idea how much to give kids like me one it was unheard of for kids to have cancer. I get scans at the end of this month and I pray everything is going to be fine but the last two more I got is called undifferentiated pleomorphic sarcoma, which is a very aggressive type of cancer , I just read to women whose husband have it and they were told that it couldn’t be cured. I was never told that right now immunotherapies seems to be working for me. I just wanted you to know that most people that I know that her doing so, are all doing well. I have gone to a camp and know a Alumni for 49 years called Happiness is camping for children with cancer. Here you get to see every type of cancer. And the people that I know who had the same cancer as me how old doing well. Just wanted you to know. Hope this does help you the only thing I recommend for any survivors out there is that you follow up with the long-term follow up programs at your hospital because chemo has a lot of side effects as you age that you don’t even realize that it can still affect you many years later. This will be the best thing you do for yourself. If you do nothing else, please follow up with the long-term follow up doctors, It may save your life in the future. From upstate New York.

I now see this was from 2009…

My first day here, wondering how you’re doing. I had Myxoid Liposarcoma on my thigh in 2008 and am obviously still here. As you know by now, there are so many variables determining the outcome. Wishing you well!

Greeting's Raymond my name, Had Ilum removed and some muscle etc for chondrosarcoma in February 2006. Hardest part is leftover pain that never stops and getting Morphine to help stay mobile and do my daily rehab and household chores. I have cut back a lot but still need it. Getting doctors to prescribe what's needed difficult with the threat they may lose their medical license by government. People making those decisions not doctors or living in chronic pain issues. My Vascular system left with Lymphedema and Lipoma that's is in ankle area and foot and removing it will cause foot loss. I am currently being forced to find new Primary after 10 years with the doctor due to retirement. Finding new care very difficult. Lack of inability to walk without aids also big issue. I am a survivor.