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Update on 8 y/o and treatment

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  • Update on 8 y/o and treatment

    My friend got all of the test results on her son. The bone marrow was fine and the lymph nodes they removed were fine. However, he does have cancer in a blood vessel. He will be on chemo for 6 months - we don't have the protocol yet, she should get that today. She does know that he will have to go every 3 weeks for inpatient chemo. Once they do 3 months of chemo, he will need radiation. They are thinking it is probably stage 2.

    Does anyone know how aggressive Rhabdomyosarcoma is with it in the blood vessels? His original testicular tumor was 9 x 6.5 x 5 cm. They didn't do a brain scan but his CT, bone scan and bone marrow tests were fine.


  • #2
    They have gone up to the hospital twice to check in for Chemo. Apparently the tumor board can't agree on what to do as far as protocol goes. They were sent home again yesterday. They may be changing doctors and hospitals. I wish St Jude would take them.



    • #3
      Don't know about rhabomyosarcoma, but I can't imagine wht St Jude won't take him if it's in a blood vessel. Is there another center of excellence for this disease your friend can try? Can you even get a consult at St Judes? You're doing a wonderful job in supporting her and her son. Stay strong.
      Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


      • #4
        If your friends want to make a trip to Sloan in NY we have room. If they want a consultation any of these doctors should be able to help, I would start with Paul Meyers.

        Paul Meyers 212-639-5952
        Leonard Wexler 212-639-7990
        Pam Merola 212-639-8392
        Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

        Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.


        • #5
          Thank you. I think they are going to stay here. They finally got the protocol. They will probably start on Monday. It looks like VCR every week for 12 weeks with VAC every third week. Then radiation. Then they will repeat the same chemo.

          Thanks for your help.



          • #6
            my thoughts and prayers go out to each of you. i hope things will get better soon. be positive!!!
            diagnosed 01/15/2005 bi-lateral seminoma stage IIa,4cm lymph node, right I/O & partial left I/O mar/2005, 18 days of radiation, remaining left I/O- aug/2005, surveillance, Wife did IVF oct/2005, DAD OF BABY GIRL born 08-02-2006!!! testosterone implants May 2008