Post Car T therapy

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hoping I’m in the right place to try and get some lived experience with post Car T therapy for ALL! 

have a question / looking for some advice please! 
many thanks 

  • Hi  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various blood cancer and Stem Cell Transplant groups.

    I don’t have ALL but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well especially as I have had two Allo (donor) Stem Cell Transplants (SCT)

    There have been a small number come through the group over the past few years who have had CAR-T so let’s see if they are still looking in.

    It is acknowledged that SCT is significantly more demanding than Car-T so although the treatment us different we understand the challenges.

    Do ask your questions and let’s see if we can help you out.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Thehighlander, 

    Thanks for the kind welcome and sharing your story. I hope you are doing well! 

    My son was 4 when he was first diagnosed with ALL, 8 years after treatment and days after his 16th birthday he relapsed earlier this year. He was lucky enough to have Car T therapy which so far he is in full remission. However, at the same time the post 3 month bone marrow was taken his CD19 count was 23 which I appreciate isn’t great! So I guess my question is does anyone have any experience of this / or can share their journey post Car T. The Dr said yesterday to go and have a nice Christmas and we’ll have another bone marrow in the new year. 

    I’m terrified he’s relapsing and this would mean a transplant which after seeing what he went through with Car T and being told what t a transplant is like I feel sick at the thought of my poor lad having to go through it. I’m so burnt out and drained and I’m not the one going through the tough bit.

    I hope I don’t offend anyone re having a moan…but problems are all relative right?! 

    wishing everyone here all the best. 

  • Honestly this is the place to have a moan and no one will be offended. I am tagging my f friend  as he has ALL and been through an Allo SCT.

    Based on my long journey, when a consultant says have a nice Christmas and is not jumping to do something immediately says a lot.

    Following my second Allo SCT my blood results were all over the place but my consultants was not overly concerned, she said that following treatments like these our body’s chemistry was all over the place and takes time to recover and for me this took a good 2 years.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thanks for your kindness and wisdom and I can only imagine your journey, I hope things are going well for you! 

    I guess I should explain the rise in CD19 (they want to be seeing it at 0) which it was a few weeks ago, could mean / does mean (I’m not sure) that the Car T’s are exhausted or running out, which after such a short time is a worry. 

  • I am doing well thank you (you can see my story in the link at the very bottom)…… having relapsed multiply times over my 23 years I know these concerns ever so well…..  The blood results that were all over the place following my second SCT we’re indicating that my graft was dying and my SCT was going to fail (again) but it was all a waiting game to see if my new immune system would survive.

    My first Allo SCT failed with in 6 months so I do understand the journey you are on ((hugs)) 

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi

    I had T cell ALL which was treated with a stem cell transplant when I was 42 back in 2013. My journey went straight from remission into a stem cell transplant as I was at high risk of relapse. I say straight from remission to stem cells but in reality it was actually 7 months after being in remission I got the stem cells due to reacting to the chemo and having acute pancreatitis to deal with first. As Mike said the fact they are saying enjoy Christmas and they will do another bone marrow in the new year sounds as if at this point they are not overly concerned about the results. The body is an amazing thing, and its ability to recover is quite incredible so hopefully  given a few weeks your son's counts can be very different in a good way. 

    I am almost 10 years down the line and my blood results are still not all in the normal range. My immune system is still low but it doesn't seem to be low enough that I get ill! This doesn't stop me leading a normal life and doing normal things in any way. 

    As you will know you sometimes you just have to take each day as it comes and try and stay positive. If a stem cell transplant is required then it is a tough few months but then hopefully it means a permanent fix and your son can move forward with a normal life. Let's hope it isn't needed and as the consultant said... have a good Christmas and then see what the New Year numbers are.


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