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  • please help

    Does anyone have any experience with extragonodal germ cell tumors in the mediastinum?

    Thanks!

  • #2
    newly-wed:
    I can't help with that one. Is that what you have or are you working as someone elses health advocate? There are direction I might be able to point you in but could you please provide a little more info. Thanks.
    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
      Have you already found this TCRC page and these stories?
      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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      • #4
        hi- thanks so much for replying.
        To make a long story short, my husband and I were married this summer, were living in New Orleans when Katrina hit, re-located to Mobile,Al to stay with my husband's parents, were on our way back to New Orleans in mid-October when my husband became very sick. We went to the doctor's office in Mobile and were told it was a stomach bug and to go home. A few days later, my husband was feeling much worse and we went back to the same doctor. He immediately admitted us into the hospital. After may tests, a diagnosis of pancreatic cancer (which does not have a good pronosis at all) talk of funeral arrangements and an amazing doctor who thought maybe the cancer cells could be from an atypical germ cell type cancer, my husband started BEP. After just a few short days, my husband's symptoms were decreasing! It was truly a miracle. The cancer symptoms came on so quickly and he was responding to treatment so quickly too.
        Before the chemo started, my husband's liver was basically replaced with "innumerable" tumors. He could not properly digest food and the amount of fluid being retained in his abdomen area was really scary. The fluid even went to his back and thighs. He did not look good and the prognosis of a few onths to live looked to be the truth. There was also a large tumor that seemed to be on his pancreas- hence the first awful diagnosis. After 2 rounds of BEP, my husband's scanned showed significant improvement. The tumors have all shrunk, there is actually form to the only 4 tumors that were still remaining in the liver, the largest being the size of a fist, and the tumor on the pancreas is now the smallest tumor of about 3cm and seems to maybe be on the spleen, not the panceas.
        My husband just finished his last day of round 4 today. He is very tired, but still has this amazingly calm spirit and clear head. On Jan. 11th, we are scheduled for more scans and then, get this, we will hear the results on Friday the 13th! I am not superstitious, but that is the last thing we need
        The doctors told us that there could be a possible chance that the tumors will be all gone, but to "not bet the farm" on that possibility. Because my husband had so much cancer to begin with, the doctors are expecting residual tumor cells.
        I haven't had any concerns as far as our health care and our doctors until now. My husband's doctors really did save his life, and I am so thankful for that. But, we have never really received a clear diagnosis for his type of cancer. My husband has responded so well to BEP that the doctors kept on with the treatment and the results have been great. However, I am nervous about having to start a secondary type of treatment that might be ifosfamide based- I know that this is the next step with extragonadal refractory patients, but am worried because what if my husband doesn't have extragonadal germ cell cancer. We have come so far that I want to make sure we are not taking any chances if we have to continue with treatment..he is 26 years old with no history of cancer in his family. The germ cell diagnosis makes sense in every way, but I just wanted to see if any one else had any experience with the treatments or if any one has a similar story. I really appreciate any advice anyone has to offer.
        Thank you so much. I really admire everyone on this site...my husband has become my true hero.

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        • #5
          thank you scott...yes, I have read the sites you mentioned. I still haven't found a story similar to ours. I also forgot to mention in my post above that the doctors did mention the possibility of a stem cell transplant in the future...this is all assuming the tumors are being stubborn.

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          • #6
            my husband is now experiencing waves of slight chest pains...the on-call nurse told me not to worry if he does not feel heart palpatations....but of course, I do. Anyone else feel this pain as a possible side effect to chemo/tumors breaking down/cancer coming back?
            thanks!

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            • #7
              newly-wed:
              From what you have written it seems that your husband is being very well taken care of. My only suggestion at this point would be to contact one of the experts at either Indiana University or Sloan Kettering. From my experiance they are more then will to give second opinions. I know that life is difficult for you right now but for your husbands sake stay informed, strong, focused and let him know that you are with him all the way. I will keep you in my thoughts and please keep us up to date on your husbands progress.
              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
                the nurses prescribed my husband some anti-anxiety pills...they think the pain might be from being nervous about our scans scheduled for the 11th and the doctor's visit on the 13th to discuss what comes next. Thanks for the help.

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                • #9
                  my thoughts and prayers are with you each day!!! good luck
                  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

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                  • #10
                    As a recent newly-wed myself, your member name drew my attention. I am very sorry to see what your husband is going through. The whole Katrina experience had to be tough enough. I can only hope that his tumors continue to shrink! Dadmo brings up a good point, and I agree you should find a way to consult w/ IU, MSKCC or another top cancer center (not sure where your husband is getting treatment).

                    I can't offer much on extra-gonadal germ cell tumors, but I posted a link that you may not of seen yet. Andrew has an incredible story and has incredible strength. And he has an extra-gonal tumor. I'm hoping this helps in even a small way!

                    _____________________________________________

                    Left I/O 5/7/05, Stage 1(pT1)
                    No VI or LI, Normal Markers
                    70% Embryonal, 30% Seminoma
                    Surveillance
                    1st child born on 8/08

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