TCell-pro-lymphocytic-leukaemia

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Hi, I joined this community early December. At the time we thought my other half had CLL. Unfortunately, we received the devastating news yesterday that he has T-Cell-Pro-Lymphocytic-Leukaemia. Apparently, this type of leukaemia is aggressive and rare. Fortunately, or not it was detected during a random blood test for something else. My partner is a healthy 72 year old. He is to undergo antibody chemo for 3 months to try and put him into remission. The chemo is Alemtuzumab (campath)! However, we have been told this cancer usually comes back within a year, or less. The only curative is Stem Cell Transplant. We are told because of his age SCT, has a 30% chance of being successful. 
Has anyone else undergone successful Stem Cell Transplant, and experienced this type of leukaemia? 

  • Hi 

    Sorry to hear the change of diagnosis but as you say fortunately is was found early. I didn't have the same type of leukaemia as I had T Cell Acute Lymphoblastic Leukaemia. I was high risk of relapse so I was offered a stem cell transplant and at the time I was told that there was around a 30% success rate. I was 42 at the time.

    Your partners medical team will always have to discuss the worse case scenarios or worst survival rates, but of course that doesn't mean they will apply to your partner as everyone's journey is different. 

    My stem cell transplant was almost 9 years ago and cured the leukaemia. 

    There is a very supportive forum for Stem Cell transplants that you can access by clicking HERE  

    You can copy and paste your post above into that group and then ask any questions you may have there. If you have any questions about how I got on during the treatment feel free to ask.

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • Hi Paul, thank you so much for your reply. It gives us hope. I read your incredible journey. I am so pleased you have been cured. The only concern I have is my partners age. He is fit and healthy. Other than the bloods and scan showing TPLL he has no symptoms! It was picked up on pre-knee op bloods. At 72  a nine year journey may be a bridge too far. 

  • Hi, i'm so sorry to read this. My mum has just been diagnosed in exactly the same way with the same thing although she did have symptoms. She will be starting campath treatment Monday, she is 73. Do you have any advise or information that may help us on our journey?

  • Hi Rivers22,

    I am very sorry to hear your mum has been diagnosed with      
    T-PLL. Because of its rarity, it is very difficult to glean accurate information, or support.

    My husband who is 73, is currently on week 10 of Campath. He is tolerating the drug extremely well.  Other than a viral bug he picked up along the way, he remains well and is currently being being tested for a possible SCT.
    Pre-med drugs, along with regular blood tests have ensured no adverse side effects.

    The horror stories around side effects of Campath can be very daunting.

    Most people tolerate the drug extremely well.

    The attached link is a very good recent article on T-PLL. Contributors such as Clare Dearden (Royal Marsden) Marco Herling (Cologne) both experts on research.

    You will also see reference to Dr Kadia (Texas) 

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8873924/

    Please do not hesitate to contact me if you have any concerns, questions.

    No one size fits all with this disease, and its rarity makes it a difficult journey, but our motto “You Are Not Alone” rings true.

    Take care, sending you positive vibes and hugs to your mum, you and all your family…HuggingHugging