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SCT for High Risk B-cell ALL

Hi all
I just joined the forum seeking for guidance and experiences from patients with ALL B-type which were diagnosed at High Risk like my son Diego (23). As background info, my son has completed the first stage of the Induction protocol and achieved partial remission in the bone marrow biopsy of day35. The specialists are aiming to get my son in complete remision in the next biopsy in day79. Once this is achieved my son will be subject to SCT due to the High Risk rating when Leukemia was diagnosed (high white cell count and 3 abnornalities in the karyotype).
I would like to learn of your experiences if the development and typology of your disease is similar to Diego's. Any tips, advises and ideas to face this episode will be extremely helpful. I appreciate that every case is different and there may be events related to a particular person but with your experience and reference of type of treatment, specialist and location will help us to make an inforned decision. Many thanks.
Looking forward to your insights,
Jhon

Comments

  • Jhon

    I was 39 when I was diagnosed with pre-B ALL and was positive for something called the Philadelphia chromosome, which is high risk. I was therefore advised to have a stem cell transplant. I was diagnosed in June 2015 and treated at UCH in London.

    I had three rounds of chemo whilst a donor was found and lined up and then had my transplant at the end of October 2015. The donor was unrelated, from Germany and a 9/10 match. I was in hospital for a while after transplant and finally out on 31st Dec 2015. However I haven't been back in hospital since then and slowly recovered before returning to work in Jan 2017. I have minimal ongoing medication.

    As you say every experience is so different that it's hard to know exactly what advice to give. Are there any areas in particular you would like more information about? You refer to needing to make a decision, is that whether to have a transplant or not?

    I'm very happy to help and share experiences, but it would be useful to understand if there are any particular areas of concern.

    Thanks

    Tony
  • Hi Jhon

    Thanks for posting, I am the lead nurse in the patient team. I am sorry that your son has been diagnosed with ALL, it must have been a shock for you all. I am glad that he is responding to treatment and you have a plan for the next stage of treatment. I am sure that the members of the forum will share their experiences with you and in the meantime please do look at our website that has patient information on all transplant issues such as preparation, infection, isolation, fatigue and GvHD. I would also encourage you to look at our videos that have patients sharing their experiences with some of these issues as well as diet and psychological support. Along with these we also have blogs and podcasts with patients and healthcare professionals on pre and post transplant preparation which you should find useful.

    We have a peer support service too, this would enable your son to talk to someone over the phone who has had a transplant and again share their experiences and give advice. If you would like to access this service or discuss any questions you have please give our team a call on 0303 303 0303 and we will be happy to help.

    Below are the links to parts of the website that I think you will find useful.
    Keep in touch with Diego's progress.

    BW
    Hayley

    Pre-transplant information - https://www.anthonynolan.org/patients-and-families/preparing-stem-cell-transplant
    Having a transplant - https://www.anthonynolan.org/patients-and-families/having-stem-cell-transplant
    Publications - https://www.anthonynolan.org/patients-and-families/order-or-download-publications
    Videos on recovery - https://www.anthonynolan.org/patients-and-families/real-stories
    Podcasts -
    https://www.anthonynolan.org/patients-and-families/get-support-us/listen-our-podcasts


  • Hello Jhon,

    My story is similar to Tony's. I was diagnosed with ALL (Philadelphia positive) in November 2013 when I was aged 39.

    I underwent 3 rounds of chemo at St Barts Hospital, before going straight for a SCT in April 2014. My unrelated donor was a lady from Germany (a 10/10 match).

    For me post SCT, I have had various forms of GvHD over the years which effected my skin and mouth. Both these are now under control. I am having some GvhD issues with my eyes at the moment but overall am doing very well and go to 3 monthly clinics at the hospital for monitoring purposes.

    That is a little bit of info about my experience and everyone has their own story. If you have any other specific questions, please feel free to ask me.

    I would also recommend reading the Anthony Nolan material about GvHD. (if you haven't already done so), as this is very useful.

    Hope that helps in some way.

    Regards,
    Neil
  • Hi Neil and Tony
    Many thanks for your insights and apologies for not getting back to you as we were dealing with some issues during treatment of my son.
    For context Diego's leukemia is EGIL B-II (B-cell) but unlike you he is Philadelphia negative which is only relevant for the use (or not) of imatinib, a drug added to chemotherapy for ALL. I am happy that you found an acceptable match and are doing well after transplant. My other 2 sons have been tested and resulted a 50% match for Diego so they are candidates for donor in a Haploidentical SCT whilst the search continues for a better match.
    Just to clarify my interest to learn from your experiences, I would like to know the following:
    - Intensity of conditioning (radio + chemo, "tailored" chemo) and the steps that your specialists have highlighted to you as key for your recovery and decreased likelihood for relapse
    - How was transplant conducted (2-step approach, conventional?)
    - Time of recovery and the type of care involved, whether or not something out of the ordinary was key to diminish GvHD risks

    Apologies if my "specifics" are yet high-level but given that your cases have been successful I want to understand whether or not something out of the ordinary took place that was key for the best outcome. With this I just want to explore all possible/plausible scenarios when discussing the SCT for Diego in the coming weeks. Many thanks!
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