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  • Waiting

    Hi all. My fiance' finished 4XBEP on Christmas Day. As of 1/3/2007, his HCG was down to 8 (over 100K at dx) and his AFP (770 at dx) was down to 32. He is going tomorrow for a PET scan and his oncologist wants him to have new CTs/MRIs Monday, 1/8/2007. I know that as long as his markers don't start to go back up, we have a better chance at avoiding HDC w/stem cell transplant. Any of you out there whose markers went up, how long after chemo did they start to rise? I don't know if the extent of spread makes it more likely my fiance's will go back up or not. I'm glad they are taking new scans, but am so afraid. I have accepted that he will likely need the RPLND and thanks to all of you who have either had it or know so much about it, I am not scared of that any more. Does anyone know of a surgeon in Houston that does the RPLND that can be trusted?

    Dr. Einhorn has been consulting with us and his wonderful pathologists reviewed the original path slides that were reviewed here in Houston and IU determined that my fiance did not have adenocarcinoma, but glandular yolk sac and choriocarcinoma. Said both should do well with chemo (we hope). It is so important to get a second opinion if there are questions on the pathology, slides, etc. I can't imagine anyone not taking advantage of Dr. E's help, or the other specialists who will help all of us.

    This week has been worse for me than probably any throughout his treatment so far. My fiance came out of the hospital with a cold and that coupled with all the chemo seems to have zapped him completely. For the first time, he looks really sick and is very weak. I am trying not to fall apart, remembering what he is going through and realizing that he won't always feel well during this. It's hard sometimes, though. The waiting for answers and results, it can drive a person crazy. I have heard many of you say the same thing.

    Thanks for listening and for sharing all of your stories. I wouldn't be making it through all of this if I didn't have this website and you all to "lean on." The TC forum has become my most visited site lately!!

    sigpic Husband diagnosed 10/19/2006. EGCT, with mets to lung, brain, lymph nodes and liver, 4XBEP finished 12/25/2006. Began HDC 2/12/2007 at IU. HDC failure 5/07. Husband passed away 7/14/2007.

  • #2
    Emily, glad you can come to this forum and share your feelings. Stay strong. Sounds like your fiance is doing really well and you are in the right hands. I can't help you with a doc for the RPLND in Houston, but can help with what it is like from the wife's point of view if you ever want to talk.

    Hang in there.
    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


    • #3
      I know how you feel

      Hi, I know just how you feel, My son (18) has just finished 3 rounds of TIP chemo 7/01/07 after having a relapse in October after having 4 rounds of BEP from march/august.Tumor markers are still normal. We are having CT scan on the 15th will have to wait for results until 30th to see if Kevin needs more Chemo. We were hoping for a chemo free year so we are keeping everything crossed.
      We all have to be strong and keep soldiering on I don't know about you I think I would have cracked up by now, but seeing how Kevin has taken everything that has been thrown at him last year and just got on with it has made me stronger and proud to be his mother. So keep strong there is light at the end of the tunnel .
      DX 27 March 06
      spread to lymphnodes, liver and lung
      4 X BEP
      5 days R/Therapy
      3 x TIP
      Kevin (17yrs) Diagnosed March 2006
      Stage 3+
      spread to spine,lung and liver.
      Paralised Due to spinal Compression With Sheer determination started to Walk again be it with crutches
      4 X Bep 3X Tip 5 days Radiotherapy. Spread to his brain 8th Feb 07 passed away 15th Feb 07.


      • #4
        Tumor markers rising


        Just wanted to answer your question about how long after tumor markers began to rise. My husband finished the initial 4 rounds of chemo in the end of January 06. His AFP at the time was 12ish and his HCG was 17. They both stayed around those numbers until March 10th. The HCG jumped one week to 40 and then continued to rise. The AFP did not change much. Maybe went up to 17 or so (the highest it went back up). When the HCG began to rise Dr. Einhorn said to have an MRI and CT scan. My husband did and they found a new brain tumor. He had cyber knife surgery to the tumor soon after this. By then his HCG was 1800 (AFP still around 17). After this he had 5 weeks of whole brain radiation. He was to have two more round of regular chemo after the radiation was finished. On his last day of radiation his HCG was back down to 20. One week later it went up again to 50. A week after that we were up in Indiana starting the high dose. His markers normalized at the beginning of the second round of high dose. AFP was 6 and HCG was 3.9. He finished the second round and a month after he had the RPLND. His markers have both been undectebale since. Hope this time line helps.

        I was in the same position you are in last year at this time. The waiting is the worst. Please do not hesitate to contact me via private message if you need to talk. I am more than willing to share our experience with you and if high dose is needed let you know what to expect. There are also a few other women on this site(Lori and Patti) who have been through high dose and stem cell at Indiana with their husbands who would also be willing to help. (Hi Lori and Patti :-) ).

        Good luck. We are pulling for you guys!

        Erin (caregiver)
        Hubby Stage IIIC Diagnosed 10/27/05,
        HCG 512,000 AFP 636 LDH 1012, I&O 10/28/05
        1 x EP, 2 x VIP, then 2 x BEP (10/31/05-1/06)
        Sterotactic Radiation to two brain tumors 12/05
        Sterotactic Radiation to new brain tumor 4/4/06
        Whole brain radiation 4/15 -5/18/06
        Tandem High dose chemo and stem cell 6/5/06-7/31/06 - markers normalized
        RPLND with 9cm x 24 cm abd mass removal 9/14/06 - Only teratoma and necrotic tissue removed
        Currently on surveillance


        • #5
          My warm thoughts and prayers are with you as fellow wife and care giver. My husband has ALWAYS said that I had a much harder job than him. He said all he had to do was lay there and feel bad, but I shouldered all of the work and worries for the family. I am not sure that is true but that is what he would always say.

          The waiting is the worst and I know you must feel just sick over it all. But if you can, which I know is a lot to ask, hand some of these heavy loads to God and maybe that will offer some comfort. You are doing a wonderful job of being supportive and of course remember to take care of yourself too.

          My husband's counts went to normal after his first 2 rounds of chemo and after the 4 rounds, the tumors were still present in his lymph nodes. The largest one, almost the size of a grapefruit, did shrink to about 3.5 cm. So they told us he needed a full RPLND. It went well (we were at SK) and actually the remaining tumors no longer contained any cancer at all. They were just masses of scar tissue...but you never know until they get in there so I always error on being safe.

          Let us know what you need and if you need to talk, just e-mail me and I will be happy to help in anyway.

          [email protected]
          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