Black boxes and bumper cars

A lot has happened in the blood cancer world in the past few weeks, since the annual ASH meeting took place in Southern California. 

Just before the meeting, The FDA told us that leukemia is now officially a potential side effect of CAR-T therapy.  CAR-T is the revolutionary therapy in which a patient's T cells are given antigens aimed at killing specific cancer cells, instead of all of one's cells.  

We also learned on December 8 that "all gene therapies," the first one of which was approved by the FDA on that day, carry leukemia as a potential side effect.  Two steps forward, one step back.  

Revlimid, the mainstay of Multiple Myeloma chemotherapy, also has a black box warning that the drug can cause neutropenia (suppressed immune system), birth defects (it is thalidomide after all...), deep vein thrombosis, stroke, heart attack and leukemia.   THEN there is a long list of precautions and warnings before we get to the 'adverse reactions' which most prescriptions have.  Dreadful to the point of comical.

We also learned about T cell exhaustion.  Chemotherapy is exhausting for T cells and every other cell in one's body; T cell exhaustion is when the immune system's fight capability is reduced because it has been 'called up' too often by chemotherapy drugs.  Doctors at Mt. Sinai hospital in New York have been claiming that if blood cancer doctors don't focus more on T cell exhaustion, T cells will struggle to kill cancer cells when the antigens are attached during CAR-T therapy.  Currently CAR-T therapy is used only after a patient has tried four different combinations ("lines") of chemotherapy.  Mt. Sinai suggests using CAR-T therapy on patients after two lines of therapy, so that the T cells are not totally 'exhausted' by chemotherapy when they are really needed. 

My see-saw crashed this morning when my immune system, quantified by a composite number called an Absolute Neutrophil Count, was quite low.  The last time I had an ANC close to this level,  (it actually was not this low, it was .9 then, today it is .8). 

I am totally exhausted.  Although the see-saw analogy fits the struggle between serious medical risks rather well (cancer vs. the immune system),  I feel like the cancer path would be better characterized by an intense seven minute bumper car ride; fast, relentless, with short bursts of terror and constant minor whiplash. 

Instead of canceling treatment today, I received a support infusion (Neupogen) to support my white blood cell count.  I received my immune therapy thereafter.  

Keep getting second opinions, friends, keep talking to research foundations, getting information and asking for help.  

It is scary to feel like this.  It makes other concerns seem so small and unimportant.  This is why I don't reach out.  

"I hope you feel better" the doorman at the hospital said to me as I left. I guess he saw something that I thought was invisible.  He is sweet and we always say hello on chemo mornings.  He must have x-ray vision. There are superheros are all around. 

Thank you for your love and support, I am truly grateful for it.  May 2024 be a year of health and happiness and glimpses of joy and beauty to you and your family. 



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