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Ewings Sarcoma

Posts: 3
Joined: Jun 2014

My brother is 22 years old diagosed in December with metastasis Ewings Sarcoma in his right pelvis (bone and soft tissue) and bilateral lungs.  He has completed 6 rounds of VIDE and 1 round of VIA.  After completing the VIDE in April his scans showed he had two remaining tumors in his lungs.  They decided to remove his lower right lobe which contained the tumors at the end of May.  Today he had a PET scan and MRI before he continued on with the 7 cycles VIA.  We were shocked to find out that 4 nodules have reappeared in his left lung and the brightness in his pelvis has increased from a 4 to a 6.  His doctor informed us that she may not be able to 'cure' him.  Can you please let me know of any clinical trials or possible opitions?!?!?  We are willing to travel anywhere.  Thanks in advance for all of you help.

nolib1966's picture
Posts: 12
Joined: Jun 2014

There are several places that specilize in sarcoma treatment. (I just googled saracoma experts and got a list).  I have carcinosarcoma and just requested a second opinion at Keck Medicine of USC.  I haven't heard back from them with an appointment time but plan to followthrough since my local oncologist has never treated a person with my type of cancer and he has been a oncologist for 31 years.

I hope to see one of their sarcoma specilist a week or so after my oncologist decides what will be my next chemo.  I had 6 rounds of taxol/carboplatin but that didn't stop it.  They are doing further testing on my biopsy specimen to see what might work better.  

I had a hystectomy and the surgeron thought she got it all and planned 6 rounds of chemo which I did and 3 rounds of radition which I didn't do because a PET scan required before the raditiation treatments ahowed 2 spots on my liver, 2 spots on the peritonum, and numberous spots on both left and right lungs....to spread out for radition treatment. 

It will ease your mind if you get a second opinion from a expert in Ewings sarcoma to know if the treatment your brother is getting is what they would do.  If it isn't I am sure your brother's oncologist would follow the instructions from a person with more experience in treating Ewings sarcoma.

I am sure your brother's well being and treatment of is illness is heavy on your mind.  Try to keep his spirits up because attiude has a lot to do with healing.

Take Care


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