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  1. #1
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    Car t

    I'm interested to know if anyone here has had CAR T therapy? My husband has been through the first stages (consenting and vital organ testing) of a trial for B cell ALL Philadelphia positive. He is patient 20 out of 100. Although scary, I am excited and completely in awe of the process of the collection and programming of the cells. To me, it is unbelievable what they can now do with cellular immunotherapy. I would love to hear from anyone that has had CAR T and what his/her experience has been.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Pretty new, pretty fresh stuff! Exciting, if somewhat nerve-wracking to begin something so completely new. Sometimes, new therapies feel like parachuting into the jungle - no map and only a machete. After a deep breath and a sigh, we begin whacking at the underbrush, hoping that we are not going in circles. Do let us know how it goes.

  3. #3
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    Hi, I know a couple on other sites, think both were Canadians and the may have been an American who had one two, all seemed to be doing ok and no one reported any major issues. Its a couple of months since any have been on the other forum so that's as much as I know.

    It does seem to be successful but not without risk.
    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.

  4. #4
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    Cell collection (aphaeresis) was very interesting. 150,000 cells were requested but my husband did 282,000. The process took about six hours and a representative from Gilead Pharma was waiting with a cooler to hop back on a plane and take my husbands cells to California. I have to admit I was amazed at the process and what I learned about how his cells will be "programmed." My husband had Marqibo as his bridge therapy and we are now awaiting arrival of his newly programmed cells. The risks are scary but I know he will get through this too. Thanks for listening. I will update during the different stages.

  5. #5
    Super Moderator Top User po18guy's Avatar
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    Balance everything against the acute leukemia - that is your baseline. Rare and/or difficult cancers require that the patient forge their own path through uncharted territory. Where you see uncertainty, others see hope. A few short years ago, before CAR-T, what would the options be?

  6. #6
    Super Moderator Top User po18guy's Avatar
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    Hurry and you can catch this: A CAR-T presentation conference call/webinar later today, Tuesday, January 22nd.

    http://www.lls.org/events/car-t-cell...c1=22346&src2=

  7. #7
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    thanks for the update it would be good to have a thread on this treatment for those who follow, so if you can please keep going with the updates
    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.

 

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