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T-cell lymphocytic leukemia

Sky@zt4
Posts: 3
Joined: Aug 2019

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 

po18guy
Posts: 1046
Joined: Nov 2011

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.

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