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Diagnosed with sarcoma? Let's share
Sarcoma | Last Active: 2 days ago | Replies (778)Comment receiving replies
Hello my name is Zaruhi and I am a 33 year old female. I went into the ER on November 6th 2017 because I was having difficulty walking. I was told I have a schwannoma and needed the tumor taken out. It was in my spine and blocking off the majority of my mobility. On November 7th they took the tumor out. It was supposed to be benign. The doctors couldn't conclude the biopsy of the tumor so it was sent to Stanford. The pathology found and confirmed that I have Ewing Sarcoma. It is in my spinal cord sac, really really really rare. I'm supposed to get both chemo and radiation. I'm really afraid. Sorry I don't know what else to say.
Replies to "Hello my name is Zaruhi and I am a 33 year old female. I went into..."
Welcome to Connect, Superdave.
@zaruhi, how are you doing? Have you started chemo and radiation?
@zaruhi I know the situations are different but crazy coincidence, I ended up in the ER on November 6, 2017 because of the kidney pain caused by my tumor that was found to be Ewing's Sarcoma (It took about 3 weeks for a definitive diagnosis). How are you doing? I have been getting alternating chemo treatments every 2 weeks, and had surgery after round 7, then 4 weeks off for recovery and will be starting round 8 tomorrow. I found that the odd treatments are harder on me (VCD, vancomycin, cyclophosphamine, and doxorubicin) I have ended up back in the hospital due to neutropenic fever and had to have blood transfusions because of my low hemoglobin each time. I hope your treatments are going well and would be glad to hear from someone in similar circumstances. I am only getting chemotherapy and surgery(done last month), radiation was ruled out because my tumor was undetectable on CT after only 3 rounds of chemo.
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I'm sorry you have to go through this. It is scary. I have been dealing with a similar situation. First a little bit about about myself. I'm a 41 year old married father of 4. I'm a physician (pathologist) who did my training at the Mayo Clinic. In 2015 I was diagnosed with a synovial sarcoma that was growing on my diaphragm. I went through 5 rounds of chemotherapy and surgery. I was doing well until this last summer when I had a reoccurrance. I went through another surgery and 4 rounds of chemo. Now I'm recovering and there is no sign of cancer (let's hope it stays that way).
You'll be amazed at what you can handle. I found that with help of family and friends I was able to get through some very tough times.