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Thread: We wait with baited breath..

  1. #1
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    We wait with baited breath..

    Hi all,

    We had a meeting with my husband's transplant team earlier this week, and we were informed out of the 6 identified unrelated donors only 1 was available and a match of 7/8 but unfortunately the donor tested negative for CMV. So husband had to do more blood tests to find out whether or not he is + or - for CMV. A bit of a set back as doc told us that risks were a lot higher if my husband was a +. We were advised to now continue the search with his cousins to see if they could be a possible match and look into doing a haploidentical transplant.

    Po, i see you had a haploidentical transplant, material i read says GvHD is suppose to be milder but i guess this is not so in your case. i've also read up on so many posts in this forum with regards to GvHD and it really seems like its a case of russian roulette, whereby some are really lucky and some are not at all.

    Everything just seems really scary right now, transplant doctor tells us we must get a move on, oncologist however tells us to take our time and to think really seriously about it. Husband is now scheduled for one more cycle of GDP and is on low dose prednisolone. So far he is doing really well, and starting to get his energy back and has gotten on his bike and is back on the trails.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    My case is a sort of worst-complicated-case scenario, so that others may be reassured by comparison. I guess. CMV is huge, as it is kept dormant by one's immune system. Kill that system and the CMV can flare up badly and increase risk of mortality. The same with a CMV+ donor, as he would be acquiring the virus from the donor. Yes, it is a huge risk, but sometimes your back is up against the wall. This may sound callous, but the default is loss of the loved one to cancer. Everything must be gauged against that.

    In the movie Butch Cassidy and the Sundance Kid, Paul Newman and Robert Redford were making their escape and ended up on a cliff overlooking a river. Armed men were advancing on them. Realizing that the river was their only escape, Newman told Redford to jump first, but he hesitated. Newman asked what was wrong and Redford shouted "I can't swim!" Newman broke out in laughter and said "Are you crazy? The fall will probably kill ya'!"

    And so it goes once malignancy arrives.

  3. #3
    Senior User Chef's Avatar
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    I'm sorry to hear about the lack of donors for your husband, my heart goes out to you and I hope you find an acceptable donor pronto!

    Once I was released from the confines of the ward (aka jail lol), I picked up CMV within the first few weeks. If it gets out of control it can be dangerous. Right away I was put on Valganciclovir and after a few weeks it was down to acceptable levels, but then a few weeks later it was back and so back on the Valganciclovir. Then it stayed away for like two months and then suddenly came back - back on Valganciclovir for two weeks and haven't had it since. Three/four months now.

    I'm not sure how it goes for donors and patients during the transplant process? It's been controllable for me thus far, it's expensive and we had to pay out of pocket. Consider the alternatives though, right!

    Much love.
    Dx NSHL StageIIIA
    CT {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies {-}
    Lung & Heart tests Good.
    Pet scan Worrisome bone marrow 3/17/16
    ABVD 6 cycles started 3/31/16
    Interm Pet {+} 5/19/16
    Stop ABVD 9/01/16
    Pet {+} 10/04/16
    Salvage GDP 10/27/16
    Misdiagnosed from Hodgkins to {ALCL ALK-} stage 4B 12/01/16
    Adcentris 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection 3/17/17 ~ 3/18/17
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = {ALK-} CD30 4/26/17
    Restart Adcentris 5/18/17
    High dose Chemo/MTX/Total Body Irradiation for three days-twice daily 8/17/17
    Donor Allo Transplant 8/23/17
    Pet scan NED 12/01/17

    In the middle of difficulty lies opportunity."

  4. #4
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    Hi all,

    so an update on my husband, last i updated i had shared that we were doing tests on his cousins to see if they were a match, out of 4 male cousins we tested only 1 was considered a haplo match, 5/8 but after further testing we found that he is also a CMV negative.

    there is only one female donor 7/8 in the worldwide registry that is considered to be a good match who is also CMV positive.

    so now we are at a crossroads, theoretically the NMDP donor will give a higher risk of GVHD being not a full match and its F>M, the Male cousin however may result in delayed immune reconstitution against CMV.

    So, what do we choose? where do we go from here? head feels like it's about to explode with all this new information and trying to figure out the best path to take. Any thoughts, advise that any of you may have on this will be greatly appreciated.

  5. #5
    Super Moderator Top User po18guy's Avatar
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    "CMV negative"? That is a good tihing, as CMV can be transmitted via transplant, or re-activated in the patient if he/she already carries it.

  6. #6
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    Hi Po,

    According to the transplant doctor in Singapore if the donor is CMV negative and recipient is positive that carries quite a high risk too. better to be a ++ or - - rather than -+

  7. #7
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    this is what i found on https://www.ncbi.nlm.nih.gov/pmc/art...60403/#cit0065

    The reactivating CMV virus strains are generally of recipient origin, and control is mediated by donor derived immune effectors. This explains the differential risk according to donor and recipient serotype. The highest risk group is seropositive recipients (R+) with seronegative donors (D−) in which reactivation occurs in up to 80% of cases. R+/D+ are at moderate risk, R−/D+ at lower risk, with reactivation rate less than 10%. Primary infection in R−/D− transplants is rare. In D−R+ scenarios immune recovery is slower but does occur, with evidence that immune recovery is mediated by nave donor T cells derived from progenitors in the graft.It has traditionally been held that T cells from the transplant donor are the sole source of CMV control as recipient immune effectors are ablated by the transplant process. This may be the case for myeloablative transplants but there is evidence that in stem cell transplants conditioned with reduced intensity protocols recipient CMV specific T cells contribute to CMV immunity, particular early after transplant before achievement of full lymphoid chimerism.

  8. #8
    Super Moderator Top User po18guy's Avatar
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    This is something that I did not have to deal with, as both my donor and I were CMV negative. But, even if either is positive, that is not a guarantee of failure. The transplant itself carries a 30% risk of mortality within three years. At some point, it becomes "any port in a storm.'

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    hi Chef,

    Sorry have just seen this. Happy to see you're doing ok, and thanks for replying

  10. #10
    Super Moderator Top User po18guy's Avatar
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    Valtrex?

    Quote Originally Posted by kaleesi16 View Post
    Hi Po,

    According to the transplant doctor in Singapore if the donor is CMV negative and recipient is positive that carries quite a high risk too. better to be a ++ or - - rather than -+
    However, regardless of the CMV status, Valacyclovir (Valtrex) is used to combat CMV as well as several common Herpes virus infections. From the Wiki:

    "Valaciclovir is indicated for the treatment of HSV and VZV infections, including:[3]
    • Oral and genital herpes simplex (treatment and prophylaxis)
    • Reduction of HSV transmission from people with recurrent infection to uninfected individuals
    • Herpes zoster (shingles): the typical dosage for treatment of herpes is 1,000 mg orally three times a day for seven consecutive days. [4]



    It has shown promise as a treatment for infectious mononucleosis,[6][7][8] and is preventively administered in suspected cases of herpes B virus exposure."
    I discovered this while researching the side effects of the various drugs I take daily.

 

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