CAR T-Cell Immunotherapy Information Needed

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Comments

  • DJS628
    DJS628 Member Posts: 77
    #22
    Harmon said:

    CAR-T therapy notes

    Answering too late for your case, but will comment in case it helps others. I received CAR-T about 18 months ago. It put me in remission after much chemo failed. It has been fantastic. But, (and remember, I am no doctor) I would think you would want to keep this potent weapon in your arsenal until after relapse, even if it was available while you are in remission. Why? It is like a cannon you don't want to fire until the enemy is crossing the moat. It may be preventative, but at unknown cost. CAR-T is risky and has side effects and AFTER effects. It  kills ALL B-cells in your body, good and bad. You are left without a normal immune system. Recovery of my mind took months (google cytokine storm). My body is still recovering and my Ig levels that protect me from all those common diseases have not returned yet. Don't get me wrong. It is well worth it. But, if it works for you, it will work after your cancer cells have returned. It will target them like an assasin. Until then, I'm not sure it was developed as a preventative as much as to be a direct weapon. It is like releasing the Kraken.

    Thanks, Harmon

    Harmon,

    I didn't think anyone has seen/read my old post again!  Also, I didn't get any notification that someone responded?  Hmmm?

    Glad to hear you had CAR-T a year and a half ago and you are in remission!  May you continue to be that way for a long, long time, or get declared cured!

    The oncologist that was involved with my tranplant finally told me that CAR T isn't usually given during remission.  I also got word from the manufacturer, too.  I agree with you. As my father likes to say "If it aint broke, why mess with it?!!"  Something like that.

    I was very concerned about them fighting for me to get it (insurance denied it unless there is evidence of disease) and was somewhat relieved when they said they couldn't do it.  Perhaps, a clinical trial may be out there and I can, but I don't know?  I wish there was more information out there.

    And yes, I understand the treatment has it's disadvantages/side effects.  I could have died during the treatment and there is no way of knowing how long it would keep working.  Like you said, it may not be used as a preventative measure. 

    Anyway, I am enjoying life being in remission yet!  I had my transplant in Jan. 2018, radiation ended in Nov. 2018.  So it's been 1 year, 2 mos in remission since my last relapse. 

    I'm trying to take one day at a time (have my times of worry/depression) and am trying to enjoy life in the moment.  I just came back from my first cruise!  It was great!

    Can you please share your story?  What kind of Lymphoma did you have, previous treatments before the CAR T and how the CAR T was, and of course, your present condition?  I wish you well & hope to hear from you soon.

    Happy New Year!  2020 seems to have a nice ring to it!

    Thanks for posting,

    Debbie

  • DJS628
    DJS628 Member Posts: 77
    #23
    ShadyGuy said:

    Having had two relapses i am

    Having had two relapses i am interested in CAR-T in case I have more issues. I will just comment that there are multiple varieties of CAR-T. It is not just one therapy. Plus it is advancing rapidly and some say it is becoming less and less dangerous as experience is gained in its administration. There may be some advantage in waiting as long as possible to receive CAR-T as these products and procedures are continuously getting better, less destructive to the body and more effective.I am still hoping for the magic bullet that kills only the cancerous b-cells and leaves the good guys alone. I think that is coming but maybe not in my lifetime.

    Me, Too

    Hi Shady,

     

    I am also waiting for that "magic bullet!"  Oh, my!  We can only keep hoping. And yes, I'm very glad they keep improving the treatments and in how to attack the side effects.  I sure hope they find the cure and soon!

    I hope you had a good Christmas and a Happy New Year!

    2020!  Wow! 

     

    ---Deb.

    P.S.

    Do you know why I don't get notifications when someone responds to my posts?

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #24
    Notifications?

    To my knowledge CSN does not notify members of replies to messages.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #25
    ShadyGuy said:

    Notifications?

    To my knowledge CSN does not notify members of replies to messages.

    Notices

    I too am unaware of availabe Notifications for online replies on these public boards.    There are definitely optional Notifications for PM/e-mail letters.  I use the "older" CNS version, however, which might make a difference.

    I just looked through the "Setting" feature.   it does not have a Reply notification system for public posts, only Private Messages.  Again, I use the original system.... I do not know if the Upgrade has that feature or not.

    max

     

     

  • Evarista
    Evarista Member Posts: 336 Member
    #26
    Max Former Hodgkins Stage 3 said:

    Notices

    I too am unaware of availabe Notifications for online replies on these public boards.    There are definitely optional Notifications for PM/e-mail letters.  I use the "older" CNS version, however, which might make a difference.

    I just looked through the "Setting" feature.   it does not have a Reply notification system for public posts, only Private Messages.  Again, I use the original system.... I do not know if the Upgrade has that feature or not.

    max

     

     

    Agree

    No notifications for replies to posts, only to Private Messages (PM's).  Even with those, you will get a "not allowed" message until you log in. The LLS groups do have the reply notification feature.

  • DJS628
    DJS628 Member Posts: 77
    #27
    Notifications

    Thanks Max, Shady and Evarista,

    Before the outage, I thought we received notifications when someone replied to our posts? It would be nice to have...

    Have a good weekend,

    Debbie

  • Emiko
    Emiko Member Posts: 14
    edited September 2020 #28
    Harmon said:

    CAR-T therapy notes

    Answering too late for your case, but will comment in case it helps others. I received CAR-T about 18 months ago. It put me in remission after much chemo failed. It has been fantastic. But, (and remember, I am no doctor) I would think you would want to keep this potent weapon in your arsenal until after relapse, even if it was available while you are in remission. Why? It is like a cannon you don't want to fire until the enemy is crossing the moat. It may be preventative, but at unknown cost. CAR-T is risky and has side effects and AFTER effects. It  kills ALL B-cells in your body, good and bad. You are left without a normal immune system. Recovery of my mind took months (google cytokine storm). My body is still recovering and my Ig levels that protect me from all those common diseases have not returned yet. Don't get me wrong. It is well worth it. But, if it works for you, it will work after your cancer cells have returned. It will target them like an assasin. Until then, I'm not sure it was developed as a preventative as much as to be a direct weapon. It is like releasing the Kraken.

    Hi Harmon

    Hi Harmon

    Some of the memeber of this forum wants to hear some information to someone who get the CAR-T. Would you give us some feedback about your Therapy?

    Did you get ASCT before? My husband have ASCT and had relapsed then got salvage chemotherapy but looks like he had relapse again so we are preparing for the next stage of treatment.

    Please help

    Thank you

    Emiko

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