T-cell lymphocytic leukemia

Sky@zt4
Sky@zt4 Member Posts: 3
in Leukemia #1

Hi, my long term partner was disgnosed with T-cell lymphocytic leukemia, which is a rare blood cancer, he has been getting treatment with Campath and is now going into remission, then follows a bone marrow transplant, is there anyone out there, who has T-cell lymphocytic leukemia, and being treated or has had bone marrow transplant and doing good?  if so, and you are living how are you maintaining your health? 

      sincerely

      Frankie 

Comments

  • po18guy
    po18guy Member Posts: 1,465 Member
    #2
    Sorry to hear of this.

    Since any and all T-Cell malignancies are incredibly rare - most of those being lymphomas, you may not find anyone with a similar history. I would hope that he is being treated at a world-class facility, or has at least consulted with one for treatment options as well as confirmation of the diagnosis. T-Cell malignancies are quite challenging to properly diagnose and many pathologists may never have seen one.

    Since 2008 I have had two mature (post-thymic) T-Cell Lymphomas (Peripheral T-Cell Lymphoma-NOS, Angioimmunoblastic T-Cell Lymphoma) and it is a scarcely populated world - good in the ultimate sense but oftentimes there may be only an echo when one seeks a fellow traveler. To top it off, I also developed a marrow cancer called 20q- Myelodysplastic Syndrome. Had all three simultaneously in 2014-2015.

    At 63, I underwent a moderate intensity haploidentical stem cell transplant, with my son as donor. I have been contending with GvHD issues (primarily skin) for over 4 years, but we have it pretty much under control now. You might check out the T Cell Leukemia Lymphoma Foundation, as their founder is a rather brilliant hematologist who has saved my life three, maybe four times now. 

    http://www.tcllfoundation.org/ Although I hear their FB account is more active.

  • RobLee
    RobLee Member Posts: 269 Member
    edited April 2020 #3
    PO18guy

    Hi, I've missed seeing you since cancerforums.net shut down several months ago.  A group of us from the PCa forum have attempted to keep the camaraderie going at another board, but it's been slow.

    Anyway, the reason for me posting here is because our son has now been diagnosed with T-cell acute lymphoblastic leukemia, and a bone marrow transplant has been mentioned. I am trying to gather as much information as I can, and will post a separate thread.

    Hope you are doing okay.

  • Clawgator
    Clawgator Member Posts: 1
    edited August 2020 #4
    po18guy said:

    Sorry to hear of this.

    Since any and all T-Cell malignancies are incredibly rare - most of those being lymphomas, you may not find anyone with a similar history. I would hope that he is being treated at a world-class facility, or has at least consulted with one for treatment options as well as confirmation of the diagnosis. T-Cell malignancies are quite challenging to properly diagnose and many pathologists may never have seen one.

    Since 2008 I have had two mature (post-thymic) T-Cell Lymphomas (Peripheral T-Cell Lymphoma-NOS, Angioimmunoblastic T-Cell Lymphoma) and it is a scarcely populated world - good in the ultimate sense but oftentimes there may be only an echo when one seeks a fellow traveler. To top it off, I also developed a marrow cancer called 20q- Myelodysplastic Syndrome. Had all three simultaneously in 2014-2015.

    At 63, I underwent a moderate intensity haploidentical stem cell transplant, with my son as donor. I have been contending with GvHD issues (primarily skin) for over 4 years, but we have it pretty much under control now. You might check out the T Cell Leukemia Lymphoma Foundation, as their founder is a rather brilliant hematologist who has saved my life three, maybe four times now. 

    http://www.tcllfoundation.org/ Although I hear their FB account is more active.

    Husband just diagnosed

    He is so newly diagnosed we have not had the first treatment yet.  He is scheduled for August 31 at OHSU for a clinical trial-he is 67 and at his age the full on chemo blast would do more harm than good.  They will be targeting based on his genetics.  My question to you is what is GvHZD?  you say skin primarily.  My husband has been suffering for awhile with intensive itching, legs, head.  He's taking two showers a day to alleviate it a bit.  Is that what you are talking about?  I'm not sure his doctor even thinks the skin thing is related, but I sure do.  I am really scared right now, trying to stay positive and get any information I can to help.  I don't know enough info yet to interpret all the info you gave above. 

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