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Worried About High Dose Chemo Results

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  • Worried About High Dose Chemo Results

    My brother Neal is on his second round of HDC and I cant believe what he is going through. From super high fevers to really bad mouth sores and many more problems like infections. He is currently in the hospital and he is on 11 antibiotics has 2 blood transfusions per day along with platlet transfusions. He is so weak and just tired of this, and to top it all off the dr's are thinking that neals cancer is becoming resistant to the chemo. Just because starting round one of HDC his HCG was at 3500 at the end of round one it was at 121. The docs weren't happy about that. So when he started round 2 of HDC they were at 350, and the docs said that he has a small window of chance. I just cant believe all of this just because when Neal was first diagnosed the dr's said that out of all cancers to have this is the best one. He has been fighting this since June 05. And now if this doesn't work then he will die. I cant believe I am actually saying that but it is true. I read all of these stories on this website and I can honestly say that I wish Neal were in other shoes. He has been through so much with this HDC I cant even describe. I have never heard of a story on this website that even relates to the grave situation that neal is in. I know that everyone has had their battles with it and it is not easy but I just hope and pray that neals outcome is postive.
    I have even contacted many expert dr's on Neals case and they have all said that they cannot help at all and what is being done right now is all there is. Just for me to look at him in this state right now knowing what he knows I just cant take it. How do you prepare yourself when there is nothing else to help you.
    I just dont know what to say anymore.

  • #2
    Have you been in contact with Sloan Kettering or IU? If not it sounds like that needs to be done. Your brother may have a battle on his hands but it's too early to throw in the towel. There are several combinations of chemo to try and many clinical trials.
    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.


    • #3
      I'm so sorry about Neal's struggle with treatment. Most of the stories shared here do have good outcomes, but unfortunately, not all. Don't give up hope. We're all pulling for you.

      Have you checked with the Canadian Cancer Society for local resources that may help you both, too?
      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!


      • #4
        Are his tumor markers numbers still coming down? What Dr. Einhorn told my husband is that as long the tumor markers #'s are lowering, that's what counts.

        There are, unfortunately, some realities that come up with cancer. But just keep going. Contact Dr. Einhorn at Indiana University and see what they say. It's up to you and Neal how you handle this journey. What I can tell you is that with Kevin we NEVER gave up at any time.

        I got you email and I'll send you a message back.

        Remember, this is a great support network and we're here be a support for you.
        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


        • #5
          Neal's Sister,

          Unfortunately we are in the same boat. My husband completed a tandem HDC stem cell transplant at the Cleveland Clinic (one in Jan, one in Apr) followed by lung surgery. He had two seperate chemo rounds, an RPLND, a by-pass, and lung surgery prior to this. In August there were signs it was coming back but blood counts were normal so they continued to survey. It's now December and both AFP and BCHG are back up. He's scheduled for more lung surgery on Friday to remove another tumor. Not sure what they are going to do after that. Repeating the blood tests, CT, and trying to get insurance approval for a PET scan. He tolerates treatment well, but may not qualify for clinical trials because he also has a Parkinson's like disease, emphysema (from chemo treatments), and a blood disorder. Our kids are 3 and 6 so I'm kinda bummed so close to Christmas. He's not handling it well. All you can do is be as strong as you can for him and let him know you care. I've been reading good things about alternative treatments - shark cartiledge, wegetarian diets, etc.