Can anyone ..

ShadyGuy
ShadyGuy Member Posts: 923 Member
edited September 2020 in Lymphoma (Hodgkin and Non-Hodgkin) #1

who has had the CAR-T therapy please comment on it? I would be very grateful as my onc visit yesterday he told me he suspects I am on my 3rd relapse. I have scans etc scheduled for early November. Thanks and please let me know what you think of CAR-T. I know a lot of people, about 20%, find it fatal. What about the other 80%? Do they find it worth the risk? I am very seriously considering just letting nature take its course, foregoing any further treatments.

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    edited September 2020 #2
    CAR-T

    Shady,

    Stem Cell Transplantation, for decades, had a fatality rate of around 30%, mostly due to GvH reactions.  (I do not know current mortality numbers.)  So, in its early stages, CART is already safer than SCT.

    If I relapsed from an indolent lymphoma, I would try the Rituxan route again, if possible.  Not pleasant, but not deadly either, and not draconian.  ICE, without SCT, might also be clinically legitimate.

    max

  • Evarista
    Evarista Member Posts: 336 Member
    edited September 2020 #3
    Something that I would want to know...

    ...before proceeding:  Are any of the choices (CAR-T, ASCT, other chemo) unidirectional?  From the clinical trials, it seems clear that one can progress from a failed ASCT to a CAR-T protocol.  But what about the reverse?  I have not seen this discussed but do wonder about it.  

    Also, now that "bi-functional" and other fancier CAR-T's are becoming available, has the mortality data improved?  If not, is it due to the protocols themselves or perhaps to the increasing enrollment of more seriously ill/poorer prognosis individuals? I think that just saying "20% mortality" does not parse the data sufficiently for making a decision.  Again, I have no answers.

  • gmarro
    gmarro Member Posts: 3
    edited October 2020 #4
    Car-T Therapy

    My Husband just completed Car-T Therapy, he is home now.  It was not easy but well worth the time.  A few days of fever and not eating.  Lost a lot of weight and now must do Physical therapy to get his strength back.  His 30 day pet scan showed all clear. He was also on third relapse and we were tired of chemo including imbruvica.  

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    edited October 2020 #5
    Thank you

     Thanks again. Very helpful to know. I should know more about what the doctor recommends by second week in November.

  • cansur18
    cansur18 Member Posts: 5
    edited October 2020 #6
    gmarro said:

    Car-T Therapy

    My Husband just completed Car-T Therapy, he is home now.  It was not easy but well worth the time.  A few days of fever and not eating.  Lost a lot of weight and now must do Physical therapy to get his strength back.  His 30 day pet scan showed all clear. He was also on third relapse and we were tired of chemo including imbruvica.  

    Car-T question

    Wonderful news that he is home now and hopefully will continue to have a successful recovery.

    Do you know if the Car-T is considered a more successful tx than a bone marrow transplant. The good news is that after having a bone marrow transplant I no longer have cancer in my body. However, I'm wondering if given the choice would it have been better for me to have gone the route of Car-T.

    Thanks, Reu

  • gmarro
    gmarro Member Posts: 3
    edited December 2020 #7
    cansur18 said:

    Car-T question

    Wonderful news that he is home now and hopefully will continue to have a successful recovery.

    Do you know if the Car-T is considered a more successful tx than a bone marrow transplant. The good news is that after having a bone marrow transplant I no longer have cancer in my body. However, I'm wondering if given the choice would it have been better for me to have gone the route of Car-T.

    Thanks, Reu

    Car-t

    In order to qualify my husband could not be in remission, you need cancer cells for the T-Cells to work properly when infused back into the body.  If the SCT fails you can do Car-t.  You will find it a lot easier than transplant or chemotherpy.  Going through CRS is the hard part but it only last a few days, just like having a really bad flu.  We go for three month pet scan tomorrow.  

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