T-Cell Prolymphocytic leukaemia (T-PLL)

FormerMember
FormerMember
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Hi, there not many recent posts about T-PLL so I thought I’d start the discussion and reach out to anyone else who has this condition.  

I was diagnosed in May this year and am on campath 3 days a week for 12 weeks, followed by a 3 month wash out period then hopefully a stem cell transplant at St. Barts.

i’m a 47 years young woman from Essex.

  • FormerMember
    FormerMember

    Hello, Lotts, I hope you don't mind me posting this may help.

    http://www.bloodjournal.org/content/98/6/1721?sso-checked=true

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Dawie,

    Thanks for the link, there’s more information due out shortly too. 

    Lotts 

  • Hi, just came across this site and spotted your post. My husband was diagnosed with T-PLL in June 2022 at age 47, he also did campath 3 days a week for 12 weeks, had chemo and blood cells transplant. Our son is our donor. We live in London. At the moment my husband in the hospital at day 29 and having treatment. I just wondering if you managed to go through and how you doing? Are you in remission? 

  • Hi Zana,

    I came across your post today. Hopefully your husband has undergone a successful SCT.

    My husband (73) was inadvertently diagnosed in 2021. He achieved complete remission with Campath at the end of Dec 2022. He chose not to proceed with SCT due to the risks involved at his age.

    To date, he is recovering from Bi-lateral knee surgery which he had last month.

    He is doing really well, and we hope he stays in remission long enough to enjoy the benefits.

    i appreciate there is not a lot of T-PLL information out there.

    There is an excellent FB group called “You are not alone” which has 400 plus members.

    The group contains a wealth of information, experiences, treatments from sufferers and caregivers alike.

    Take care