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  • Any advice please

    Any advice would be helpful.

    Stage 1 NonSeminoma diagnosed December 2005
    Post surgery AFP went back down to normal and chose the surveillance route. AFP remained constantly at 4 for the last 4 months.
    Friday was told it had gone up to 22 and I would need BEP 3 cycles
    Main question is on Bleomycin I am 30 years old and have been a reasonably good athlete in the past and want a few more years of athletics, so am thinking of requesting a reduction or change in the chemicals given to me because of lung damage. Any suggestions?

  • #2
    You can ask about 4xEP as an alternative to 3xBEP, but under no circumstances should you receive less treatment than has been proven to be curative.
    Scott, [email protected]
    right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


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    • #3
      Tim,

      Take a look at the current thread titled "Greetings" in the "Just Diagnosed - What Next" Section. Stuff has been posted regarding 3xBEP versus 4xEP.

      I understood that 3xBEP was pretty much standard now as it has a better rate of cure for TC than 4xEP. Although, as your aware bleomycin can be toxic to the lungs and it has previously found to be fatal in about 1% of TC patients. If you are considering 4xEP over 3xBEP, I'd recommend speaking with an expert to obtain advice - after all there's no prize for coming second with this illness.

      I'm assuming from your address that you are in London, England? If so, you maybe being treated at the Royal Marsden in Sutton which is the UK specialist centre for testicular cancer. I'm currently being treated there at the moment with 3xBEP. Professor Horwich and Professor Dearnaley are true world experts in testicular cancer, and I'm sure would advise.

      Davie
      Diagnosed March 2006, Stage IIB, 3cm RP mass
      10% Seminoma, 90% Non-Seminoma (Embryonal, and a tiny amount of choriocarcinoma and teratoma)
      Prechemo bHCG-2648, AFP-582
      3xBEP March-June, markers normalised
      3 months postchemo - 1.2cm residual RP mass
      RPLND September 2006 - mostly necrotic tissue plus tiny amount of well differentiated teratoma
      June 2009 - TRT commenced to help out my lefty
      May 2011 - check-up, all clear

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      • #4
        LondonTim:
        The recommendation I made for my son was 4EP because I was worried about lung function after the Bleo, but you really need to evaluate your situation before you recommend anything to the doctors.
        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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        • #5
          Hi

          Nice to see a fellow Marsden person on the thread, yes also under the professor. The prime concern is obviously complete cure, but I would consider alternatives, because of the athletics, I'm no Lance but have in the past trained with some of the best athletes in the u.k and would love to have an attempt at a sub 2.25 marathon after treatment.

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          • #6
            Tim:
            Do you have any spots on your lungs, and what was the tumor composed of?
            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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            • #7
              Scans so far are clear it's just the markers that are up.
              I'll try to post my pathology up today.
              Was only told about my markers on Friday

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              • #8
                I believe the 4xEP is considered as having essentially the same cure rate as 3xBEP, but it has more side effects (nausea, etc.), although it does not cause lung problems. See http://tcrc.acor.org/chemo.html.
                Right I/0 March 30, 2005
                Left I/O April 20, 2005
                Embryonal carcinoma, teratocarcinoma
                Surveillance since May 19, 2005

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