New Ewings/PNET diagnosis - adult

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.

Ewings Tumor
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

SisJane said:

Ewings
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.

Adults with Ewing's
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!"