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  • Germ Cell Treatment

    Hello,

    My wife (aged 30) has had Ovarian Cancer for 6 years. Yesterday we were told the devastating news that they didn't think it was curable any more. We have reached the clutching-at-straws stage.

    It may seem odd to place this on a testicular cancer forum, but the tumour she has is a germ cell (yolk sac) and more akin to testicular cancer than ovarian cancer.

    It was first diagnosed in Sept 2000. She had the tumour (and one ovary) removed and shortly afterwards had TIP chemo. Six months later her AFP came back and she had BEP. Markers returned to normal but our doctor decided that it would be sensible to follow it up with a single course of high dose chemo with stem cell transplant, which she coped with really well.

    Everything seemed good for 18 months, but then the AFP rose to around 25. It then, strangely, stabilised for a year before rising again. A scan found a lump which was removed by surgery (no chemo) and markers returned to normal for about a year (until Sept 2005). At the start of 2006 she had more chemo using Thalidomide after surgery to remove 4 small tumours. Two weeks ago the AFP rose from 2 to 10. Last week it was 31. It looks like the cancer is back.

    Our doctor, who is usually positive, was very downbeat, telling us he didn't think they could cure her. Worse was that his attitude seemed to be to simply sit back and wait until the cancer symptoms started before doing anything. We can't just sit back and let the cancer grow. We want to try tandem (two cycles) of high dose chemo, which he suggested a year ago before plumping for the Thalidomide, but yesterday he said he doubted it would help.

    The current plan now is to try HRT for a month to see if that arrests the tumour growth (the AFP does seem to be linked with her coming on and off the pill). If that doesn't help we'll look into going on a Phase 1 clinical trial in the autumn (fall), but he didn't seem too hopeful about. He doesn't seem to understand that we need hope.

    She's always responded well to chemo, with AFPs returning to normal each time. We kind of felt that we'd be able to continue having chemo until they found a cure. Can anyone suggest anything? Are there other, more advanced trials? Could tandem high dose chemo help?

    It's cutting me up just doing nothing.

  • #2
    poulet69:
    Welcome to the forum and I hope we can help. It sure sounds like your wife's treatment is for testicular cancer so I will suggest to you what I would for a tc patient. Contact an expert in the field of tc treatment you can find a list of them here. I see that you are in England but I would start with Dr. Einhorn at Indiana University or Dr. Motzer at Sloan Kettering. Dr. Einhorn seems quicker to respond so start there. Good luck and keep us posted.
    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.

    Comment


    • #3
      My husband is in the middle of tandem high dose with stem cell transplant for TC with Dr. Einhorn. He is amazing and responds to emails. Don't give up.
      Lori and Jon
      Diagnosed 5/22/2006
      I/O 5/26/2006, Stage 3, Good
      Teratoma (Majority), Seminoma (10%), Yolk Sac
      3xEP then determined not working
      HDC w/stem cell transplant 8/16/06 to 9/25/06
      Chest and Neck surgery 10/9/06 - immature teratoma
      RPLND 11/16/06 - immature Teratoma
      2/29/2008 - markers continue to be normal!
      9/16/2008 - released from Dr. Einhorn's care

      Comment


      • #4
        Hello and Welcome
        Another place to check out is Mayo clinic http://mayoclinic.org/ovarian-cancer/index.html there are 3 locations in the United States. They might not be a treatment location for you but they may be able to help your doctors with treatment options. I have a cousin that is treating there and also a co-worker that was given the same bad news as yourself from the local University hospital and Mayo over ruled them and took a very aggresive course and she is back to work now but still getting chemo after her surgery that removed the cancer that the University said couldn't be removed. Don't give up and Good luck
        Brian
        5-1-2006 Right IO - Stage 1 Nonseminoma Embryonal and Yolk sac - Surveillance Baby on the way Born 7-20-07

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        • #5
          I would also recommend contacting LIVESTRONG SurvivorCare to ask about treatment options and clinical trial matching. See this link or call 1-866-235-7205 from 9:00 a.m. to 5:00 p.m. Eastern time.
          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


          Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

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          • #6
            Thanks

            Thank you to everyone who has taken the time and trouble to reply.

            Not a heck of a lot to report really. So far I have managed to contact Dr Einhorn who kindly replied very quickly. Unfortunately he didn't really come up with any new ideas.

            I've not got the email address for Dr Motzer. Any ideas, anyone? Dr Einhorn recommended a couple of doctors in the UK who I'll try contacting.

            We will look into all of the other suggestions we've received so thank you once again for your ideas and support.

            Comment


            • #7
              Click here for Motzer's contact information. It doesn't give an email but try either [email protected] or [email protected]
              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.

              Comment


              • #8
                Here's some other treatment options too. Try the chemo oxaliplatnin. also go to www.clinicialtrials.gov or www.pubmed.org. The clinical trials will tell you what clinical trials are going on in the US. From there, you may find a list of other chemos to try.

                Pubmed.org lets you do a wide variety of searches on published reports.

                My husband had aggressive testicular cancer. The standard protocol treatments didn't work so we researched everything and found a couple of nonstandard treatments that definately helped.

                Keep up the work.

                Patti
                Wife of Kevin Murphy
                Diagnosed 7/16/04 100% Choriocarcinoma
                Oriechtomy 7/20/04
                4xBEP 8/04-11/04 BHCG:1200 (lung only)
                Rediagnosed 12/27/04 BHCG: 50
                1xVIP 1/05 (lung)
                HDC/Stem cell Indiana 2/05-4/05 BHCG: 51-4.5 (lung)
                HDC failure 5/05
                3xGemzar/Taxol 6/05-9/05 (lung only)
                VP-16 w/Avastin 9/05-1/06 (lung only)
                Cyberknife 5" lung tumor 2/06
                cyberknife 6 brain tumors 3/06
                1xOxaliplatnin 3/06 (liver, lungs, kidneys, left hip)
                Passed away 4/13/2006

                Comment


                • #9
                  Thanks again

                  Thanks Dadmo. Unfortunately the email addresses for Dr Motzer didn't work but I'll try a few more combinations using initials and I still have other experts to try.

                  Thanks Hopeful. Oxaliplatin is new to me and gives me a little hope. I'll ask our oncologist about it. Pubmed and ClinicalTrials are really good. I can't believe I haven't found them before.

                  If nothing else, I feel better equipped for when we next meet the doctor.

                  Comment


                  • #10
                    Don't know if you saw this in the Mayo link

                    Every bit of info helps good luck
                    Brian
                    5-1-2006 Right IO - Stage 1 Nonseminoma Embryonal and Yolk sac - Surveillance Baby on the way Born 7-20-07

                    Comment


                    • #11
                      Latest update

                      Hello all,

                      Although I don't have a heck of a lot to report, I felt I should let those who've replied know what's been happening.

                      I've been doing a lot of surfing and reading of technical medical publications over the last few days. A lot of it makes fairly depressing reading, but the one drug that seems to offer a glimmer of hope is oxaliplatin (combined with gemcitabine) - thanks Patti for the lead.

                      My wife spoke to her doctor today and mentioned it to her, but the doctor said it was an old drug that couldn't help. But the stuff I've read suggests it could (although its still a long shot). The problem I have now is convincing our doctors that its worth a try.

                      I'm waiting on emails from doctors in Canada, France and New Zealand who've done trials with oxaliplatin in the hope that they will back up the idea. Hopefully, then our doctors will agree to give it a bash.

                      I'm also waiting on Dr Motzer to reply - Scott, I think the email address worked as it wasn't rejected!

                      I'll let you know what happens...

                      Comment


                      • #12
                        poulet69:
                        Thanks for the update. Your wife should be very proud of you for what you're doing.
                        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.

                        Comment

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