Another CAR-T death this week…

For those who haven’t yet seen this, this occurred a few days ago.  Apparently this patient’s lymphoma was very advanced.  There seems to be a high correlation between degree of disease and severity of Cytokine Release Syndrome (CRS).  We’ll have to wait and see what this means for Kite Pharmaceuticals’ request for FDA approval for their CAR-T program.

One of Kite Pharma’s CAR-T patients died from cerebral edema, triggering a safety alarm – ENDPOINTS NEWS

Kite CAR-T Death: An Unwelcome Mystery as FDA Mulls Approval | Xconomy

Kite Pharma Discloses CAR-T Patient Death, Rattling Investors – TheStreet

Investors spooked by Kite CAR-T death, but biotech remains confident | FierceBiotech


3 thoughts on “Another CAR-T death this week…

  1. The FDA, just need to talk to someone, who has had several treatments and all failed. Like me. Until I did the CAR T at 62 years old. You are warned very well before treatment and the decision needs to come from the patient. Not someone who doesn’t know, what it’s like to go thru round after round with no life at the end of the tunnel. I was so defeated, even though I’m a real fighter. And I watched my mom die from this terrible DLBCL. It was horrible foaming at the mouth. Eventually chocking on her own saliva. I truly thought I had little hope of beating this. Until I found CAR T. I was infused December 23rd, of 2016. And have had my very first remission, and I believe it is permanent. This is a revolutionary treatment for people with blood cancers. THEY NEED TO APPROVE IT NOW, TODAY. Let people make up their own minds about there health care. Think of the savings in health care. Goodness one chemo treatment can be 35000.00. I had 16 rounds. Think what if these people were offered this in the beginning. Think of all the lives saved. Think of all the money saved. I believe that most patients would choose the CAR T because it offers a more permanent solution. I am sorry for the people left behind, when someone dies, but most of these people have had extensive cancer. I felt like, well I have a disease that is gonna kill me. So why not try this new treatment. Nothing else offered me any hope.
    Shirley from Maine

    Liked by 1 person

    • Shirley, I am so happy to hear that this worked for you. If you are in a Complete Remission after 6 months, the odds are good that you will stay in remission. Oncologists are reluctant to use the word “cure”, but after 2 years since my CAR-T infusion, I’m starting to believe I may be cured of something I’ve been battling off and on since 2004.

      It seems FDA approval will come sometime this year. Now the problem for patients will be $$, unless you have insurance that will cover the costs. At least as a clinical trial participant, my costs were relatively minimal.

      Wishing you continued good health…

      — Ben


    • Hi Shirley. I also am glad CAR-T is working for you, as it is working for Ben and my wife.

      In November 2011, at the age of 65, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 3 years she progressed after R-CHOP (6 cycles), bendamustine/rituximab (6 cycles), and Ibrutinib (12 months). Then she took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again. She is now in an NIH CAR-T trial NCT02659943 was infused on March 2, 2016. As of July 5, 2017, 2017 she has been in complete remission for 16 months. Current CAR-T clinical trial data shows that once a follicular lymphoma patient achieves a complete remission they stay in complete remission.

      As posted on this website, here is some good news I learned from Dr. Steven Schuster (one of the gurus in CAR-T) during a November 17, 2016 Lymphoma Research Foundation “Advances in Immunotherapy in the Treatment of Lymphoma” teleconference Q&A. This teleconference is posted at

      Results from his UPENN Abramson Comprehensive Cancer Center follicular lymphoma CAR-T clinical trial showed:

      * Of 14 follicular lymphoma patients 10 (72%) achieved a complete remission.
      * No patient achieving a CAR-T complete remission has relapsed.
      * As of today the average time in complete remission is about 2 years.
      * If your complete remission is 2 years or greater you have the same survival odds as someone who never had follicular lymphoma.
      * After one year about 50% of his follicular lymphoma CAR-T patients have their non-lymphoma B-cells come back and no longer need IVIG infusions.

      Best, William


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