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New Ewings/PNET diagnosis - adult

Posts: 719
Joined: Feb 2005

Hi, I recently had two small tumors and part of a rib removed at UCSF, with a Ewings/PNET diagnosis. I have met w/ one oncologist and will have a second opinion at Stanford on about two weeks. The chemo regimen planned is tough, with alternating hospitalization for chemo one month and then infusions the next. This is seemingly such a rare diagnosis for adults that I am having no luck finding people on thsi site...I am a colon cancer person and that site part of this site is HUGE.

Has anyone out there Had chemo - the 5 drug regimen used for children and adult Ewing's? Any thoughts about anything???

I love hearing all of the nutritional news. I'm just a little scared. Eventhough I know chemo will hurt my body, I am frightened to not do any...I hope that makes sense. I want to try to complement my chemo w/ nutritional work, though. Have been juicing for two years...somehow that is not helping keep cancer at bay.

Well, I hope I get some reply....and I willbe heppy to join in this fight for all of your survival as well.

All the best,


tcashell's picture
Posts: 1
Joined: Jun 2008

Hi, my daughter went through this. She had Ewings Sarcoma Bone Tumor Cancer in her femur bone. She was diagnosed in March of 07. She is now 15 and cancer free a year later. The chemo and infusions were tough on her with the dropping blood counts, mainly after the 5 drug regimen. We had them give her neulasta and procrit to keep up her counts. Drink plenty of fluids during the chemos and infusions to keep the drugs from affecting the organs. The chemo affects each patient differently with fatigue and nausea. They have a lot of drugs to conteract these side affects to make you feel as normal as possible. Here is the main thing. Stay happy. Keep a positive attitude. Our Faith was renewed and strengthened during this past year. Your attitude has a huge affect on the way your body reacts.

Posts: 1
Joined: Jun 2008

Hi Maura, I was diagnosed with Ewings in April and had a toumor removed from my back and started Chemo in July and am in my third treatment in the regimend of 10 treatments. ES is very agressive as my tumor grew from the size of a dime to over 4 inches in 2 months. Because of that, the cells floating in my body must be killed to prevent further chances of the ES hunkering down somewhere else and starting a tumor. BTW, I am 49 years old so I may be the oldest ES diagnosis... a title I am not glad to have.

Posts: 1
Joined: Dec 2009

Well, SisJane, don't feel bad - I can tell you that you are definitely not the oldest person diagnosed! I was 59 when I was diagnosed in May 2008 with Ewing's. We are definitely rare specimens, you and I. Mine was in the left shoulder, which is also unusual. After 4 intensive rounds of chemo, there was no active cancer showing there. They thought it had been localized, but I recently experienced lower back and leg pain, which led to an MRI, which indicated new growths in my spine and a couple of extremely small lesions in the right lung. They've been confirmed by a PET scan and next week I launch back into radiation and chemotherapy. I had the VAI chemo regimen the first time around last year and it was brutal to say the least. This time, the spots are very small and they are going to try a less toxic regimen, done in tandem with radiation this time. I am very lucky to have strong support from friends and family, and feel very blessed. I am otherwise healthy and determined to conquer this beast to live long enough to enjoy some retirement years for which I've worked so hard! God bless us all, especially us "old dogs!"

Posts: 1
Joined: May 2009

Hi Maura,
I am new to the web site but after I read your letter I wanted to reply. I am 44 years old and during 2008 my life changed because of a tumor behind my left knee. After many test's I was diagnosed with EWINGS SARCOMA. I started a very aggresive chemo regime in March that worked very well. Half way through the treatments (11 total) I had surgery to remove the cancerous part of my leg. I now have a new knee and 1/3 of my left leg is a prostetic, but my cancer is in remission.

The chemo did take it's toll on me, I can give you my schedule if you are interested. The biggest side effect for me was fatigue and my appetite was messed up. I did not have any nausea because I was taking some very good anti nausea meds. I had hiccups that required me to take Thorizine and the Thorizine added to my fatigue. During my treatments I loved the taste of fresh fruit and vegetables. Cold water and orange juice were the two fluids that I liked the most. Prior to my surgery I became anemic, but my oncologist assured me it would pass and it did. My diet consisted of simple foods that were not greasy. The fresher the better. I love coffee but I could not drink it, and I loved ice cream.

I wish you the best.

V/r Tom Wisdom

Posts: 4
Joined: May 2009

I was diagnosed with ewings in my scapula at age 29. It had grown there for probably 4-6 months, (I was treated for a rotator cuff injury!) so I was definitely not a kid when it developed.

I had chemo with adriamycin (doxorubicin), vincristine, ifosfamide, and eventually a little etoposide at the end. I had surgery in the middle of the chmemo to remove part of the scapula.

It was very hard on me, but I think every person's response to chemo is different. Other people at the sarcoma center at MD Anderson had few/no side effects with similar treatments.

Posts: 2
Joined: Mar 2017


This is my first post on this website. I'd like to read more survival stories on Ewing Sarcoma. My wife was recently diagnosed with PNET Ewing Sarcoa. I have never heard of this cancer before. I took her to the emergency room on the 8th of February because her PCP said she looked pale after a checkup.  She had a variety of tests including a bone marrow biopsy. She was kept at the hospital until they can reach a diagnosis. On feb20th she was diagnosed and was transferred to a UCLA cancer specialty hospital. She finished her first treatment of chemotherapy 2 days ago. Her pain started from her around her clavicle. Her primary care dr thought it was a pinched nerve. It got progressively worse. I'd like to know what lies ahead for us in fighting this disease. I was told by the oncologist that the tumor has spread to her lungs and has wrapped around her spinal cord. The medical staff at UCLA has not given me a treatment plan because they are still waiting on the results of her first chemotreatment.


Please feel free to email me at sirmik3@gmail.com


Thanks, Mike

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