• RockTom's Avatar

    RockTom shared a photo

    Wall_i_want_a_cure_for_hodgkins_lymphoma

    All I want for christmas is a....cure for Hodgkin's Cool hoodie I am ordering, yes, my present to me. Amazon has these for several diagnoses get one here if you want one http://amzn.to/2AGlt99

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Hey, I could use one of those! I might have to accidentally leave that picture on the computer screen, with the link to order from, by mistake of course.

      11 days ago
  • RockTom's Avatar

    RockTom asked a questionHodgkin Disease

    When you were diagnosed did your doctor use terms like Incurable, hard to cure,advanced disease, stage 4, incurable, palliative

    17 answers
    • geekling's Avatar
      geekling

      YES. I unthinkingly wrote BoiseB's fantabulous quote of "Doctor Doom" without giving her credit.

      Bad, geekling!. Apologies, BoiseB!

      I did add "and Gloom" but I should have credited you, @BoiseB, with coming up with the 'handle'
      "Dr. Doom".Lol, it has a good ring to it and I could dance away from it, if you remember American Bandstand with Dick Clark, don'cha know?

      Anyways, did I say second opinion? BoiseB was lucky to have her nephew advocate. Who advocates for you?

      If travel $$ is a problem, Angel Flights and Mercy Flights for puddle hopping & Southwest Mercy flights for cross country... If not hire a helper of impress a relative into assisting. Remind them of all the favors you did for them, lol, or bribe them with gold.

      Please, if one doctor says he or she can't help you, believe that person and, instead, find a doctor who can help. Keep looking. I stayed alive for 13+ years looking for a diagnosis!

      I even turned down the first treatment offered when I was finally diagnosed. I didn't like the odds. I had already stayed alive for at least 13 years without ant medical aide so I wasnt gonna be rushed with an offer of 60%/40% in my favor .I waited, lol, until they offered me different drugs with 95% odds at being effective. But the radiologist lied about the side effects and an oncology tech botched up the treatment.

      But your case is different. You need to finds odds at all for a chance to survive. Its Christmastime! Seek and, with luck and good wishes, you may find.

      Best wishes

      13 days ago
    • HeidiJo's Avatar
      HeidiJo

      I was Non- Hodgkins small cell B stage 2, curable. In fact, my surgeon told me " you got this"

      12 days ago
    • BoiseB's Avatar
      BoiseB

      I stuck with Dr. Doom because second time around when I started throwing around terms like second opinion I also threw around terms like "clinical trials" and "grants " . Dr. Doom started getting interested in finding out what was going on. I became the favorite lab rat. And that term "grant" Yep Dr. Doom got a big grant that allowed him to do full-time research.

      12 days ago
  • RockTom's Avatar
  • RockTom's Avatar

    RockTom shared a photo

    Wall_today_if_all_you_do_is_hold_yourself_together

    Are you having a good day? Or just trying to hold it together?

  • RockTom's Avatar

    RockTom started following

  • RockTom's Avatar

    RockTom asked a questionHodgkin Disease

    Is Iron deficiency a normal side effect of chemo?

    8 answers
    • BoiseB's Avatar
      BoiseB

      Just having cancer causes a whole lot of deficiencies. My potassium, calcium , magnesium really tanked for these I actually needed infusions of these. My iron and B12 were also low but I was able get my iron up through diet and I take B12 tablets

      16 days ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      All of my blood values stayed in the normal range throughout chemo and with rare exceptions have stayed normal through immunotherapy treatments as well.

      I don't eat a particularly healthy diet and have been in constant treatment for over 5 years. I take no supplements.

      From what I understand, some chemo treatments are more likely to deplete your iron than others. But, each of us are individuals and our bodies all respond differently to treatments.

      Good luck!!

      16 days ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      Agree with others,depends on what type of chemo or treatments you are taking and your individual responses to them. When I was in chemo my WBC count tanked near the end of my treatments, this apparently is a frequent occurrence with my type of chemo. I also had to take Magnesium supplements per doctor’s orders. This is why doctors monitor your blood count so closely.

      15 days ago