CAR-T therapy

FormerMember
FormerMember
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Hi all, first time here. 

I was first diagnosed with NHL in 2009, had three different types of chemo but in 2011 was given a terminal diagnosis.

Then I got better! After almost 6 years of remission (apart from being told I have follicular lymphoma (watch and wait), it came back. 

Another six rounds of chemo and back into remission. I was then recommended to have a stem cell transplant (my own cells) as the amount of chemo and other tests etc I had undergone would make another relapse problematic. I had the transplant late last year but had sepsis and required a keyhole heart op because my heart was racing away. After 7 weeks in Bart's (fantastic care - can't say enough good things about them), I came home, then back for another two weeks with temperature spikes. Unfortunately, my 100-day scan showed new growth which was confirmed about a month ago with another PET. This time more activity and almost doubled in size. Going for the new CAR-T cell therapy at UCLH but a planned biopsy could take place as there was fear of piercing my bowel. So currently waiting to find out if going to have a surgical biopsy or just go ahead without. One option put forward which I didn't like was to wait for the disease to get worse to make the biopsy easier. Will be fighting that idea if it comes up again!

I know this is a new treatment so I'll try and keep you updated as things progress.

Good health to all. 

  • Hi and welcome to the Community.

    Sorry to hear the journey you have been on but good that there is another tool in the box to move you in a positive direction.

    Lyn  is today staring her CAT-T Journey so I am sure she will pick up your post.

    Have look at her two threads here and here.

    When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

    All the very best.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi whilst still new in this country the is a number of cohorts now being reported on and things are improving all the time with CAR_T therapy, with a recent paper confirming the success with cd19 car-t immunotherapy for FNHL patients some who had transformed disease. You can read the abstract in the Blood Journal. 

    What was your diagnosis in 2009, which type did you have if it was dlbc then than too is responding well to car-t treatment.

    John 

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • Hi Simples 61,

    I was also at Barts only problem I had there was the food all staff whether nurses, doctors or support staff of every kind were fantastic I agree with you wholeheartedly. Unfortunately I relapsed yet again , so am now at UCLH awaiting my T cells. Having three days of chemo then two days off before they give them back to me on Wednesday. Just like at Barts all staff are great haven’t tried the food yet as I’m staying in the dedicated hotel round the corner , yes the hospital has it’s own hotel. 

     Will keep everyone updated Lyn x