• 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.

      about 1 month 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.

      about 1 month 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!

      about 1 month ago
  • RockTom's Avatar

    RockTom asked a questionHodgkin Disease

    I have been done with treatment for a couple of years but it migt be starting again.

    4 answers
    • GregP_WN's Avatar
      GregP_WN

      I agree with PO about waiting until you know for sure before jumping on the cancer train. My motto has always been "don't worry about something until you have something to worry about". It does not one tidbit of good to spend time and energy worrying about it. I know, easy to say and hard to do!

      As for the pain meds, I can't say for sure but I am sure to find out shortly as I have some surgery and possible treatment for a new diagnosis myself.

      4 months ago
    • Bengal's Avatar
      Bengal

      I have found, whereas in the past the doctor automatically wrote a scrip for oxi or hydrocodone at the mere mention of pain, now they ask; how am I managing my pain, do I think I need something stronger, can I tough it out?

      4 months ago
    • Skyemberr's Avatar
      Skyemberr

      Md Anderson has a very good palliative care program. They know we hurt, and the doc spends a whole hour n of face to face time making sure you are getting enough relief..they will call and fight with your insurer if they believe you need a medication.. They have literally saved my quality of life and may be the only reason I get through Christmas without the hospital this year.

      4 months ago
  • RockTom's Avatar

    RockTom asked a questionHodgkin Disease

    Do you find that the farther out from the end of treatments you are the less you think about what it was like being in it?

    5 answers
    • myb's Avatar
      myb

      Yes, I agree that the further out we are from treatments, the less we think about it. I was talking with a Colorectal Cancer Alliance Buddy the other day about her current journey when she asked if my colon cancer was in the ascending or descending colon. For the life of me at 7 years out, I couldn't remember.

      4 months ago
    • Kp2018's Avatar
      Kp2018

      Yes, and I am just a little over a year out from completing treatments. Sometimes I feel like asking myself, "Did that really happen?'' Occasionally, I actually worry about being in a state of denial about the whole thing.

      I find that I do heed the lesson of trying not to get it too far out of my mind. My signing in to whatnext.com every day is my daily reminder that I have cancer. I say "have" in spite of being NED because I fear that cancer (dormant tumor cells) or the propensity to develop more of it never goes away. So, my behavior belies being in denial.

      Nonetheless, it's easy for me to put the memory of treatments in the dim recesses of personal history. Maybe it's because I had a pretty easy ride through treatment, with very few side effects. I also was able to maintain my regular schedule of activities throughout treatment due to very considerate scheduling. So, aside from the few hours in treatment, there was no gigantic disruption of my life. Finally, I chose to be private about my diagnosis, sharing only with my spouse and closest family members. So, friends do not inquire about my cancer related health, making it easier to not think about it.

      I am aware that the risk of recurrence lurks, especially during the first several years after completing treatment (for tnbc). So, every day I am grateful that I am seeing no signs of recurrence and vow to live fully and joyously in the present.

      And, yes, I'm all for staying on this side of it and not having to go back!

      4 months ago
    • JaneA's Avatar
      JaneA

      I've just passed the 5-year mark of my Stage IV diagnosis. I think back to my treatments, and it's difficult for me to believe that I did all of that and am still here.

      4 months ago
  • RockTom's Avatar

    RockTom asked a questionHodgkin Disease

    If you've already had a bone marrow transplant and it fails a few years later, what's next?

    • BuckeyeShelby's Avatar
      BuckeyeShelby

      I haven't, but a local meteorologist did. They were readying for another transplant, but unfortunately he took a turn for the worst, so I know a 2nd transplant is possible.

      5 months ago
    • po18guy's Avatar
      po18guy

      Which type of transplant did you have? Your own cells? Sadly, those are the least risk as far as mortality, but do suffer from a higher relapse rate. You can have an allogeneic transplant (donor cells) which carry higher risks but have a better long-term record against the cancer.

      Again, there are newer drugs and drug combination to use - many of them biological drugs which are not standard chemotherapy.

      If you are not at an NCI designated comprehensive cancer center, please at least consult with with. In the US, find the nearest center here: https://www.cancer.gov/research/nci-role/cancer-centers/find

      5 months ago