I live with my husband, 2 cats and 2 dogs. Had 2 walking horses. But had to sell one last year and donated other one to medicine horse for handicap, autism kids and adults.

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I hope it’s ok for me to post- my husband had a sarcoma and I was his caregiver. He was diagnosed at age 39 in 2009 with a stage 3 “Ewings-like” sarcoma on his left leg near his knee & luckily with no bony involvement.
It took longer than usual for diagnosis since it wasn’t exactly Ewings. I think they explained that it had slightly different DNA.
Finally they decided to say Ewings ‘like’ and treat it as such.
We lived in Dallas at the time and saw 3 Dr’s. We decided to go to Mayo (Rochester) for another opinion. We were most comfortable with the doctors and approaches there. The most important part was surgery to get clear margins. Several doctor friends gave advice that since this is such a rare cancer, he needs to find a top surgeon who has had many, many experiences with treating sarcomas.
His team made the plan for him to do several rounds of chemo (he was considered young in cancer years so he had a rigorous pediatric regimen), 5 weeks of radiation, surgery to remove the tumor, followed with several more rounds of chemo which was 10 months total treatment.
His oncologist was fantastic. He worked closely with our oncologist in Dallas so we could stay at home for treatment. We lived in Rochester for 5 weeks with our 2 daughters during radiation, followed by the surgery.
He finished with 6 rounds of chemo at home and finished in May 2010. We have always come back for check ups so his doctors could use their equipment, radiologists, and have their eyes on him. Not super practical to go back and forth, but cancer isn’t very practical! 😉 I hope that helps!

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Hi, I'm Kristen, 36, I was diagnosed with Ewing's sarcoma November 2017. My tumor had pressed against one of my ureters blocking the drainage from my kidney (causing pain similar to a kidney stone) and was very small when it was found. I've been through 7 rounds of chemo and have had surgery to remove the portion of the ureter that had the tumor. The tumor was unable to be seen on CT after just the 3rd round of chemo,, so things are going well. I'm being treated by the sarcoma group at Mayo in Rochester, MN. Each of my chemos requires a hospital stay of 3-6days which is hard on this mom of 4 (ages 11-20).

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I made it through and am now getting back to work. Last week was my first full week of work, it was exhausting but good to be back.

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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?

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My sarcomas were soft tissue. Dr. Attia is my treating Dr. Dr Sherman was the surgeon who removed the sarcoma. The cancer is in remission,yea. Currently I'm on a chemo maintenance program every six (6)

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Welcome to Connect, @saemlerpe. I'd like to introduce you to @ventibug and @me67, who also have soft tissue sarcoma.

Saemierpe, what type of soft tissue sarcoma do (did) you have? What chemo maintenance are you on and how are the side effects?

@kristennursepatient, how are you doing back at work? Are you able to pace yourself and manage fatigue?

@viviand have you started radiation yet?
@erikahamilton did you already finish radiation?

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My sarcomas were soft tissue. Dr. Attia is my treating Dr. Dr Sherman was the surgeon who removed the sarcoma. The cancer is in remission,yea. Currently I'm on a chemo maintenance program every six (6)

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I discovered a small lump on my back around my shoulder blade last spring. I was diagnosed with small cell sarcoma and had surgeries to get clean margins and reconstruction from April-July 2018. I also had chemotherapy from Aug-Dec 2018, because scans revealed nodules in my lungs. Chemo reduced most of them, but one has enlarged since my last infusion. I am scheduled for radiation in a few weeks. My sarcoma is very rare, although may be similar to Ewing’s. Love to hear if anyone wants to share.

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I am also being treated by Dr Attia at Jacksonville for UPS (undifferentiated pleomorphic sarcoma). I was diagnosed 2 years ago and have been through radiation and surgery (at another hospital) and now on my second type of chemo with Mayo. UPS first appeared in my left calf and I had to have the soleus muscle removed. It has since metastasized in the lungs, but the treatment I am receiving now seems to be keeping it small, and not spreading. I choose to remain hopeful and busy. 😁

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Hello. My son was diagnosed with synovial sarcoma in 2017 just two weeks before his 21st birthday. He had proton therapy and major thoracic surgery 6 weeks later. Surgeons removed two ribs, part of his lower lobe, and the mass that was growing near near it all. He had to take a sabbatical for a semester from college, but he returned to school and graduated on schedule. He had just started working two weeks before at a job in his field, when we received the news that his cancer had metastasized. He is only 23. Mayo immediately began the process of getting his chemo started. We have now completed two cycles. He has no appetite and is very nauseous. We are devastated by this all. He is trying so hard to be strong. 5 days after his first cycle, he went back to work. I know he is hoping he will be able to do the same this time, but I’m not sure.

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