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Thread: Car t

  1. #101
    Experienced User
    Join Date
    Dec 2017
    Posts
    73
    I would say that the biggest differences are neurotoxicity did not happen when my husband has his transplant in 2014. Also, my husband's WBC was 0 during transplant and with CAR T , his counts didn't drop that low. He had severe mucositis with his transplant and did not have that at all with CAR T. I am sure there are many differences but honestly, I cant think of anything more than what I mentioned already.

    For me, as his wife, the CAR T was scarier. Even though the neurotoxicity was expected, that was scary to see. My husband also had very high fevers and the seizure activity and the stroke. All of which he fully recovered but that was scary.

    Not sure if you knew my husband had a bone marrow transplant in December of 2014. His older brother was a perfect match.

  2. #102
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,324
    From watching a programme in the UK following 2 patients through treatment I would say the neurotoxicity is the massive difference and some of the issues that develop as part of that,
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  3. #103
    Experienced User
    Join Date
    Dec 2017
    Posts
    73
    Hello Johnr - I tried to find the program you are referring to on BBC but what I found is that it isn't available anymore. I could only view the trailers. I really wanted to see it.

    James is about 7 months post CAR T (ZUMA 3) He seems to be doing well except for his low ANC. It was 280. He did receive a neupogen injection and his ANC went up to 2800. James has had neupogen previously but this time was different. He didn't feel well at all. Most bone pain and with the cell production he underwent, it is understandable.

    They will watch his labs weekly and nothing else to report other than we dodged a bullet here in Florida regarding Hurricane Dorian but please pray for everyone in the Bahamas. Pure devastation there and I do not know how they will recover. So sad.

  4. #104
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,324
    Hi if the programme is ever shown again I will try to download it and will see how it may be shared as it was really good and insightful. Fingers crossed that things continue to improve and settle for James.
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  5. #105
    Experienced User
    Join Date
    Dec 2017
    Posts
    73
    Thank you very much

 

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