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Relapse of ALL following SCT

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Moirplace Total Reaction Points: 0
Hi my 16 year old daughter was diagnosed with ALL in September. She received a SCT in March but on her day 35 bone marrow test they have found leukaemia. We are devastated, I know the prognosis now is not good and I'm terrified.
The rough plan is Blinotumumab then if shes suitable CAR-TCELL therapy and if a remission is achieved a second transplant. We know this is going to be very difficult and there are definitely no guarantees
Has anyone on here relapsed early and had 2nd SCT or received Blinotumumab or CAR Tcell therapy??

Comments

  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 225
    Hi there, I'm really sorry to hear your news which I can imagine is absolutely devastating. I guess you're still reeling from the shock but the important thing is that the medical team appear to have a plan and hopefully it will be successful.

    I don't have any experience of Blinotumumab or CAR-TCELL therapy but I know there are several patients on here who have relapsed after a first transplant and have had success with a second one. Hopefully that will give you some hope that it can and does work and there's no reason why it shouldn't in your daughters case. Prompted by your post I've read a couple of pages on the internet and on one I note that in some studies 90% of children with ALL who had relapsed had gone on to achieve full remission with CAR-TCELL therapy, so the results of this treatment do look promising.

    The campaign by Anthony Nolan recently to keep second transplants routinely funded by the NHS was based on the success they can bring and the number of cases where second transplants have been successful and cured the patient. We have seen through this forum many times that second transplants do work.

    No matter how hard it feels please try to stay positive and we will support you through the process. The Anthony Nolan Patient and Families team are also brilliant so don't hesitate to contact them directly for help, advice and support.

    My best wishes to you and your daughter and please keep us updated as things progress and ask for support as you need it.

    All the best,

    Steve
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 51
    Hello, my name is Hayley and I am the specialist nurse in patient services.
    I cannot imagine how difficult this must be for you and your family, it must have been shocking and distressing to be given that news so soon after the transplant. As devastating as this situation is, your daughter does have options and it sounds like her team have a treatment plan, which is reassuring.

    It is important to remember that everyone's situation is slightly different, especially in these circumstances. The treatment plan will be very specific to your daughters disease and time of relapse. I have worked with patients that have relapsed very soon after transplant and had more chemotherapy, got back in to remission and had a successful second transplant. Blinotumumab and CAR-TCELL therapy are relatively new treatments so you don't be disappointed if you do not hear from anyone who has had exactly the same treatment. In my experience Blinotumumab has been successful in getting patients back in to remission. I have not had so much experience of the use of CAR-TCELL therapy but I know it has some very promising results and its positive that this is an option available to your daughter.

    The first step is to get your daughter back in to remission and I am sure her team are starting this now. At such a difficult time please try and remember to look after yourself too, ask for help and support from family and friends. The hospital should have support for both your daughter and your family so I would encourage that you use this to help you all in the next few weeks. You can keep in touch on the forum or contact the patient team directly via email PatientTeam@anthonynolan.org or give us a call.

    Please keep in touch

    BW
    Hayley
  • Moirplace Total Reaction Points: 0
    Thank you so much guys. I'm not sure how this forum works so don't know how to reply to you individually. I too have been looking online but only seem to find scientific research papers and they scared me. Dieseldrinker62 could you send me the link to the article about CAR TCELL?? We have yet to find out if she will be suitable for this but she is definitley being considered. It is reassuring to hear there are people out there alive and well after a second transplant. The docs have stopped her ciclosporin to try and induce a little GvL, but they need to give steriods and vincristine in a few days while they wait on blinotumumab (they need to be granted a licence for her as shes under 18). The steroids may reduce the GvL but they think its the best option for holding the leukeamia. Your messages have given me some comfort and hope. thank you so much. x
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 225
    Hi,

    The link I found was on the Leukaemia and Lymphoma Society page and explains how the process works, possible side effects and indication of promising results. It sounds like it's a new process so as Hayley says it's unlikely someone here will have had any direct experience of it so far.

    https://www.lls.org/treatment/types-of-treatment/immunotherapy/chimeric-antigen-receptor-car-t-cell-therapy

    It's good that your daughters medical team have a plan and this is probably one of a number of options they are exploring.

    All the best,

    Steve
  • Moirplace Total Reaction Points: 0
    Doctor came in and advised us yesterday that CAR-TCELL therapy has been put on hold in the UK at the moment. It might resume at the end of the year but she's not sure. At them moment the doctor is suggesting pressing ahead with blinotumumab and hoping the tcell therapy will start later.
    I have been looking online at trying to source another country to get her this treatment just incase the UK cannot offer it in time. I have equity in my house and our family have savings etc. I cannot find a center yet. Is there anyone who can give me hints on where to look online????
  • NicholaNichola Total Reaction Points: 9
    Hello,

    I am so sorry to hear you're going through such a difficult and scary time at the moment.

    From my personal experience of having treatment over 5 years ago, I am unable to give particular advise on CAR-TCELL therapy and whether or not this will be returning to the UK or not.
    I really wish there was something more I could say to help put your mind at ease, however I wouldn't want to give you the wrong information.
    I am sure someone from the Anthony Nolan team will be able to give advise soon, if you haven't already found an answer.

    I really hope you get the answer you're looking for, and I wish your daughter all the health and strength needed at this time!

    Please let me know if there's anything else I can help with... I was 24 when I had a BMT to cure my blood disorder and prevent AML from developing, so if your daughter has any questions from a 'younger' females perspective, I'd be more than happy to try and help.

    Best wishes,
    Nichola x
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 51
    Hi,
    I am sorry, this must be such a difficult time for you and your family. CART-CELL therapy is relatively new and the only treatments offered in the UK and abroad will be on a trial, so unfortunately it is very limited. To be accepted in to any trial patients have to fit strict criteria and in your daughters case she will have had to respond to treatment first so to go ahead with Blinotumumab is essential to get her disease under control.
    I cannot possibly imagine how difficult this must be for you and I know you will do anything to get your daughter treatment but unless a trial has been recommended by her transplant consultant I would be wary of looking online. The information is not always accurate and results can be misleading. Your daughters transplant consultant will be aware of the up to date trials that are on offer both in the UK and abroad so I would advise that you discuss any trial that you have seen with them first. They will want the best treatment for your daughter whether it is something they can offer or another transplant centre can offer. Consultants across the country and abroad keep in touch to ensure they know about the most recent treatments, so I would definitely advise to be led by them.

    If you would like to discuss anything with me please contact me via email with your number and I will call you. The email is PatientTeam@anthonynolan.org

    BW
    Hayley
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