MSK lymphoma / leukemia experts to answer CAR-T questions on Facebook Live (6/8 3:00 PM)

This is my first time posting from my iPhone, so I don’t know how this will come out. I’m unfortunately at work this afternoon, so I won’t be able to catch this live.

I don’t have any questions, but I would love to personally thank them both. Dr. Younes got me through two clinical trials in 2013-2014, and Dr. Brentjens and his colleague Dr. Jae Park opened up their CAR-T to Follicular Lymphoma patients in 2015 (I was their first one). Without them, it’s unlikely I’d be here to type this now.

I assume a video will be available to watch when I get home…

Anas Younes, M.D. (@DrAnasYounes)

6/7/18, 12:44 PM

Please join us tomorrow on Facebook Live from @sloan_kettering and ask questions about lymphoma, CART cells, and new emerging treatment strategies for lymphoma. Both Dr Renier Brentjens and I will answer your questions m.facebook.com/events/2194075…

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My lymphoma takes a back seat…

Sorry things have been rather quiet here lately, but I have to confess I’ve been less interested in following CAR-T and Follicular Lymphoma events for the past several months, and the reason is this: Last May, I was diagnosed with Prostate Cancer.

Fortunately, prostate cancer is a slow-growing cancer, allowing time to explore several options, including “active surveillance”, a.k.a. “watch-and-wait” (sound familiar, fellow fNHL survivors?).

Unfortunately, my “watch-and-wait” period proved short-lived, as a February biopsy showed progression to what is known as a Gleason 7, meaning treatment of some sort was now necessary to eradicate the cancer before it could spread outside the prostate.

I opted for a full prostatectomy rather than radiation (I was told they’re equally effective), and I had the surgery on April 4. I’m pleased to report that everything has gone much better than I expected, and my health is almost fully restored just 10 days later.

Two days ago I received the pathology report of the surgery. Four lymph nodes were removed for biopsy along with the prostate, and fortunately they showed no cancer. I suppose it is bonus information that there were no active lymphoma cells in the lymph nodes either. Thus the remission from my July 2015 CAR-T infusion continues!

During my exploration of options last summer, one radiologist mentioned to me that it was her belief that my prostate cancer took hold during the period when I was immunocompromised, as a result of several treatments leading up to my CAR-T infusion. No one else mentioned this, but I believe it has some merit. I think this is another reason fNHL patients should seek the minimum treatment necessary to achieve a reasonable remission — the risk of developing a secondary cancer. I’d be interested to read risk assessments of the various treatments available insofar as secondary cancers. The disease I seem to see most often is Myelodysplastic Syndrome (MDS), which has been described as a “pre-leukemia”.

Of course, prostate cancer is a relatively common cancer anyway for men over 60 (which I’m about to become), so perhaps all my prior treatments did was to speed things up by a few years.

Anyway, I’m happy to report that I’m ready to resume tracking current events regarding CAR-T as I encounter them. This blog’s partner-in-crime William (Bill) has been doing this reliably the entire time. I hope to begin to take a more active role along with him in the months ahead.

Best in Health to all of you!

— Ben