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

    Asked by maryl on Thursday, April 3, 2014

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

    How do I prepare for whatever may come? Bed pads, check, gloves, check. Estate plans, hubby, God love him, is in total denial, & I think I should take the chance of letting him stay there. What do you think?

    4 Answers from the Community

    4 answers
    • lilymadeline's Avatar
      lilymadeline

      Has his oncologist told him that he has only 5 months? He might want to get a second opinion, my mother heard that she had only a month left but we went to another hospital and she was given nearly 4 more years. And the same thing happened with my friends mother last summer, so sometimes they are wrong and getting a second opinion can make a difference.
      But other than that...I would think that he should know the truth if you think it will make any difference in how he lives the rest of his life, because he may have people that he wants to see or at least talk to and things that he wants to do. However do make sure that all the paperwork is in order, and anything else practical that you can think of. And just do what you are doing, being there and loving him! Good luck and best wishes!

      almost 7 years ago
    • 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?

      about 5 years ago

    Help the community by answering this question:

    Create an account to post your answer Already have an account? Sign in!

    By using WhatNext, you agree to our User Agreement, and Privacy Policy


    Read and answer more myelodysplastic syndrome (mds) questions.  Also, don't forget to check out our Myelodysplastic Syndrome (MDS) page.