Updates on Robin

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  • Nancy, thank you for the update. That's wonderful news about Robin's PT and meds' costs. I will continue to pray--and I'll be specific. I will also be praying for you. I love you, my friend.
  • Great news Nancy. Will continue to pray for both of you.
  • Nancy, your posts are giving me goosebumps! God is so good! So many blessings. I will be praying for both of you and specifically for a clear direction regarding the stem cell transplant.
  • The Dr said he is officially in remission.

    This is my Praise God Smiley

    The biopsy showed no cancer cells on the bone marrow and
    20 % Philidelphia Chromosome (as opposed to 85% at diagnosos)

    I really don't understand the role the Chromosome plays
    with the leukemia ( whether it is a cause or result of the leukemia)
    The information about the chromosome is hard to find...
    At Duke tomorrow I will ask more about this.

    I am also going to ask if it is a partial remission because of the
    20% Phil .Chromosome.

    I do know that relaspes are common so keeping him in remession will still be a challenge.
  • Great news Nancy!!!!
  • Oh Nancy....I'm so happy for both of you!
  • Very good news, of course. But, you are right, there are many challenges ahead. But, enjoy this for all its worth.

    Rhonda
  • great news Nancy.
  • Lots of prayers were answered today...

    Accoring to Duke new drugs have improved the odds of not relapsing with ALL PH+ but the best odds for cure are still doing a Stem Cell Transplant. They clearly recommended the transplant if a matched donor
    can be found. He does not have a living sibling so now they go to the world wide registry to try to find a match. The race now is to find
    the match and do all that needs to be done to prepare for transplant
    before he relapses. He will continue his Chemo every 3 or 4 weeks to keep it in remission until we do a SCT (stem cell transplant).

    I got a lot of questions answered today and feel so much better that all his doctors are on the same page. They explained the Philedelphia Chromosome more and are doing more research to be sure one of his iron reducing meds is not interfering with a drug called Gleevec that is a Chemo drug he takes everyday.. I think they will discontinue the iron
    reducing drug and it makes me feel good that I asked about it. I like the way this doctor thinks & explains why he is deciding what he does.

    Thanks for letting me do this thread..it helps as a sort of journaling
    outlet for me also...
    I know everyone is praying so please don't feel like you have to respond to every post...
    Love you guys..
  • Hey Nancy, do you need any of us to get typed to see if we match? What is involved?
  • I just thought of one more thing to share and saw your post Sloan..
    That made me cry just to think you would even ask that...

    I think the process is for a donor to join a national registry as a willing
    donor and then if they match you with someone that needs a transplant they would contact you to see if you are still willing and if the timing works ect.

    My guess is that the process of being typed is involved and takes some time ,but this whole experience has raised my awareness of how many people never get a chance because they cannot find a good match. The waiting room at the transplant center was full today of families all facing the same type thing. I am going to see about being a donor as soon as we get through this.

    Another thing is for everyone that can ...please give blood...
    We have used lots of whole blood & platelet transfusions and
    I know giving blood really does save lives...


    Okay..the original reason I pulled this post back up..
    Another praise I forgot to share..
    The entire costs of the transplant will be covered by our primary & secondary insurance !!! We will not even have daily copays when we are
    outpatient !!!
  • I'm so happy to hear that things are going the best they can. Prayers continue. I'm honestly not trying to get political here but Jim and I say to each other often.....Thank God for health insurance!