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Need advice, Refractory/Cisplatin refractory Germ Cell

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  • Need advice, Refractory/Cisplatin refractory Germ Cell

    Greetings to all. Wanted to give you the Reader's Digest of our story. I'm a caregiver/girlfriend for Dan who has germ-cell mediestinum/non-seminoma/yok sak. Diag. 12/28/06 VIP Failed/ Surgery/ High Dose Chemo-Bone Marrow Transplant(not tandem) failed/ Gemtox failed/ now on Avastin/Oxyplatin which doesn't seem to be working. Does anyone have ANY information on Sloan-Ketterings phaseII study for Refractory/cisplatin solid tumors? They are impossible to get a hold of.

    Has anyone else been through these steps? Any advise?
    We communicate with Einhorn...and have a fleet of people at the cancer care center here, but everyone is quite vauge.


    Any help is great...

    Thanks
    M

  • #2
    M:
    Take a look at this trial or this one . Dr. Motzer is running both trials and he is wonderful. When I get a chance I'll write more.
    Last edited by dadmo; 10-23-07, 04:13 PM.
    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.

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    • #3
      MDHarris, I am sending you and Dan my love and prayers.
      Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
      Current DVT
      Current testosterone replacement therapy, Testim.

      "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

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      • #4
        Originally posted by mdharris
        mediestinum/non-seminoma/yok sak. Diag. 12/28/06 VIP Failed/ Surgery/ High Dose Chemo-Bone Marrow Transplant(not tandem) failed/ Gemtox failed/ now on Avastin/Oxyplatin which doesn't seem to be working. Does anyone have ANY information on Sloan-Ketterings phaseII study for Refractory/cisplatin solid tumors? They are impossible to get a hold of.
        I am not sure if I should just keep quite.

        With the above history really the only phase-II refractory TC treatments you will fit into would be the sutent trials.
        Indiana will probably also offer you oral etoposide as a option.

        On the 'TC scale', mediastinum primary really is the worst possible when it's refractory.

        I want to write something more positive, but I know from experience that being told by different sources that you are not 'missing' something can give some rest of mind.

        Obviously there are a lot of phase-I trials, but it should be considered very carefully how much 'quality of life' you are willing to give.

        For a piece-of-mind I would call with Sloan.

        Was the Gemtox -> Gemox with Taxol?

        I really wish Dan and everyone around him the best.

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        • #5
          M,
          Glad you found us...we'll do whatever we can to help. The links dadmo gave you are good. Since you're mot getting a response from Sloan can Einhorn get on that? Can you post what the marker levels are and where the tumors remain? Never, every give up hope.
          Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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          • #6
            I am so sorry for not seeing this until now.

            M, I just sent you a private message with my personal information in it. I may be able to provide another option that you probably are not aware of.

            Contact me anytime, day or night. I will do whatever I can to help.

            Michael

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