• RockTom's Avatar

    RockTom posted an update

    I just completed a survey from Rare Patient Voice and earned 100.00, thanks for that! It was pretty simple, easy to do and lord knows I can use the money after missing so much work. Send me more please.

  • RockTom's Avatar

    RockTom asked a questionHodgkin Disease

    Anyone taking vitamin supplements?

    4 answers
  • RockTom's Avatar

    RockTom started following

  • RockTom's Avatar

    RockTom started following

    Question: What to expect

  • RockTom's Avatar

    RockTom asked a questionHodgkin Disease

    Has anyone been through ABVD and MOPP in different diagnoses then had your Hodgkin's come back?

    • GregP_WN's Avatar
      GregP_WN

      I had both of those for two separate dx's, they worked but 18 years later I was dx'd with a different diagnosis. So I'm no help to you as far as the next line of defense.

      4 months ago
    • po18guy's Avatar
      po18guy

      Hodgkin's 'can' relapse, but is not normally known for that. My concern is that the pathology on the biopsy sample might not be/was not correct. I know of several cases in which Anaplastic Large Cell Lymphoma (ALCL) was misdiagnosed as Hodgkin's and the wrong treatment given. Conversely, I also know of cases of Hodgkin's which were misdiagnosed as ALCL.

      I strongly urge you to have your latest biopsy re-evaluated at a different pathology lab, preferably at a university/teaching hospital or a major cancer center. Mistakes are made and it is very difficult to distinguish between some types of lymphomas.

      My case is slightly different, but goes to prove the point. Neither pathologist nor oncologist thought I had a malignancy. In truth, I was at stage IV with a rare and aggressive T-Cell Lymphoma. Only when I went to Fred Hutchinson/SCCA was I properly diagnosed.

      4 months ago
    • Erik1059's Avatar
      Erik1059

      I had both as well, with multiple dx's. The BMT was my next treatment. Please read my story, it may help.

      https://www.whatnext.com/blog/posts/from-a-devastating-diagnosis-in-his-20s-to-23-years-of-surviving-and-thriving

      The BMT worked well for me, it never returned, now 28 years later. Keep up the fight!

      4 months ago
  • RockTom's Avatar