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T-cell lymphocytic leukemia

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? 



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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