Annette Stephens

First post: Apr 3, 2019 Latest post: Nov 27, 2019
Thank you to all our good friends and family who have been so supportive since we found out about Annette's cancer diagnosis February 18, 2019 (President's Day).  Annette has TPLL which is an acronym for T-cell-prolymphocytic leukemia.  It's a rare form of leukemia that is diagnosed in about 1,000 people a year in the US.  We're very fortunate to be in Houston and close to MD Anderson Cancer Center which is one of the best cancer centers in the world for treating leukemia.  Dr. Kadia, who is a specialist in this type of leukemia, is managing Annette's care, and we are totally confident in his knowledge experience and capabilities!

TPLL is a cancer of the blood, and of the t-cells in particular, which are white blood cells.  The t-cells act like the 5 star generals of the white blood cells, so they are the organizers of the other white blood cells in fighting germs.  They are produced in the bone marrow, with all the other blood cells.  With this cancer, as the t-cells mature, they mutate and replicate.  As you can imagine, any time there are too many cooks in the kitchen, it's a problem, and with too many t-cells, they cause problems by infiltrating organs and wreaking havoc.  The early symptoms are fever, night sweats, swelling of the lymph nodes and/or spleen and fatigue.  Basically, most people feel like they have the flu, and it doesn't go away.

In Annette's case, she didn't have any of those symptoms, but had some strange swelling and soreness that first showed up on the back of her arm.  It felt like a sore muscle from working-out.
Then, she had some swelling on the top of one of her feet, then later the same swelling on the top of her other foot.  She went to her primary care physician at the Medical Clinic of Houston, who thought the swelling was abnormal.  She referred Annette to a rheumatologist, who after doing some blood work, referred her to a hematologist, who did some more blood work, which came back positive for TPLL.  The hematologist called us with the results on February 18, and referred us to MD Anderson, and here we are today six weeks later.

Over the last 6 weeks, Annette has been through extensive testing, and Dr Kadia has determined that the TPLL has infiltrated Annette's muscle fibers in the areas where there is swelling.  As a result, she will begin her treatment Monday, April 8, 2019 to combat this cancer. 

The treatment begins with 6-12 weeks of immunotherapy with a drug called Campath.  This is not chemotherapy, but a manufactured antibody.  Campath is used to kill the t-cells and to get the cancer into remission.  The remission, however, doesn't have durability, and the cancer typically comes back in 6-10 months.  So, the strategy is to get the cancer into remission using Campath and then have a bone marrow transplant.

We're fortunate that MD Anderson has already found some people who are bone marrow matches through the donor registry!

We're going to keep a very positive attitude and take one day at a time!

Annette really appreciates all the outpouring of love, support and prayers (I do, too!)! 

I will provide updates here as we learn more. 


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