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Dad on Exjade and Thalomid

Home Demo forums Patient Message Board Dad on Exjade and Thalomid

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  • #13904
    Dawn
    Member

    Hi All,
    I need some help, Dad recently started Exjade and Thalomid, he received transfusion on a Monday and count was 9.6…by Tuesday it was 8.6, and Friday, 8.3….I am thinking that maybe the Thalomid is causing it to go down before it goes up?…Experiences please!!

    Thanks!
    Dawn

    #13905
    Neil
    Member

    Hi DAwn,
    Thalid. might be taking his counts down. They should be increasing — if he is going to respond.
    Has the doc discussed using Procrit or Aranesp to support his red counts while waiting for a Thalid response?
    Would lean very heavily on the docs knowledge and advice during this period.

    #13906
    Rackon
    Member

    Dawn, you’re likely right.

    I’d presume that Thalidomide works very much like its drug cousin, Revlimid, which tends to make you a little worse before it makes you better.

    My experience with my dad on Rev. (and the experience of nearly everyone else on this therapy) is that it can send *all* blood cell lines lower, not just HG. It can take several weeks on the drug to see an improvement, if any. A lot depends on the individual. Until then, it can be a rollercoaster ride.

    My dad did very well on Aranesp for nearly 4 years until it stopped working for him in February. For those 3 1/2 years he was TX free. He has never been on Exjade.

    He has lots of antibodies in his blood so his TXs don’t hold well anyway. When he first started on Rev. all his counts went way down. The doc took him off for a week then restarted him on a lower dose which he has tolerated much better. Perhaps your dad will need his dosage adjusted as well.

    Dad’s cell count dives could be rather dramatic and swift. Again, he started holding his TXs better after the dosage reduction and after he’d been on Rev. for a few weeks.

    I’m not as familiar with Thalidomide’s profile because Dad’s doc now treats with Revlimid instead. But I’m sure there are other folks here with direct experience with it who will chime in.

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