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    maryl wrote on Susa's wall

    Hello, Susa, I'm new here, too. And, I've not had much time/energy to participate. I, too, am a caregiver, for my husband who was diagnosed with MDS in Jan. 2014. We start round 3 of chemo tomorrow. So far, our doc hasn't seen the improvement he's looking for. It's scary, & that is draining. I think there's a fine line between optimism and denial, that's where we are. How are you dealing with this? Mary

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    maryl asked a questionMyelodysplastic Syndrome (MDS)

    IPSS-R says high risk, average longevity of 5 months...

    4 answers
    • Clyde's Avatar
      Clyde

      How long has it been since he was told or you found out about the prognosis? Denial is natural and since it is he, and not you, let him go through this......but for only so long.

      In any case, as lilymadeline says, get a second opinion and a third if you want. Doctors can be wrong, can give the worst possible scenario (because they feel that is best) and there can be all sorts of reasons. See another doctor, from a different hospital for your own and your husband's peace of mind. Think of it as comparison shopping. It never hurts to see if you are missing something.

      almost 7 years ago
    • maryl's Avatar
      maryl

      Thank you for the encouraging answers...I am going to encourage him to get that 2nd opinion, & no, his oncologist told us he has seen persons with this condition last as long as 2 years, but also that my husband's is a particularly aggressive strain.

      almost 7 years ago
    • aml's Avatar
      aml

      All of these comments are "almost 2 years ago." Is anyone currently dealing with MDS. I am the spouse of a male diagnosed 5 months ago with severe MDS. Currently receiving 7 days of chemo per month and weekly transfusions. Not sure what lies ahead. The blood counts keep dropping and all are in the critical level. Anyone else been through this stage and what can I expect next?

      almost 5 years ago
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    maryl started following

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    maryl shared an experience

    Drug or Chemo Therapy (Vidaza, 7 days in March 2014, & undergoing now in April 2014): Totally hubby's decision, we can stand & fight, or we can go to New Orleans one last time...roll of the dice...

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    maryl shared an experience

    Procedure or Surgery (Referral to hematologist, took 1 look at husband & history of 6 blood transfusions, & said MD Syndrome. Confirmed with bone marrow biopsy Jan. 2014)

  • maryl's Avatar

    maryl shared an experience

    Procedure or Surgery (GI tests, scopes, swallow camera, still wt#*!? Dec 2013)