My CLL and CAR-T story: Hi, Many of you may... - CLL Support

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My CLL and CAR-T story

bkoffman
bkoffmanCLL CURE Hero

Hi,

Many of you may know my story but if you want to hear me tell it when I am the one being interviewed at ASH by my good friend Giora Sharf, a strong and experienced blood cancer advocate and CML patient, you can watch here: cllsociety.org/2019/08/ash-...

Stay strong.

We are all in this together.

Brian

Brian Koffman MDCM DCFP, DABFM, MS Ed

Co-Founder, Executive VP and Chief Medical Officer

CLL Society, Inc.

cllsociety.org

11 Replies
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As always Thankyou for sharing and giving us hope

Thank you and best wishes to you,

-John

Thanks to you Dr. Koffman and your team for all that you do for the CLL community.

So wonderful you have found something to work for you. Thanks so much for all you do for the rest of us.

Brian, I was on ACOR a couple of years before you. I remember when you joined I had two thought The first was that if my family Dr. didn't know any more about CLL than you did at that time I shouldn't bother to ask him questions. The second thing I thought was that I wanted to watch you and see if you actually did what the Drs were advising CLL patients to do ( ie Chemo) and sure enough the doctor/patient (you) didn't go the chemo route.

john

bkoffman
bkoffmanCLL CURE Hero
in reply to johnl

Great insights. Thanks. Scary how little I knew, but I know enough to know that I. didn't know much and that chemo made little sense.. Then we had few choices, Stay strong Brian

Smakwater
Smakwater
in reply to bkoffman

You are the Wagon Master.

Keep em pulling those wagons!

JM

Hi Brian,hope you are doing well , I had a question for you about your Ibrutinib experience did you have many side effects from it? I am about to start it myself and although I realize we are all different I am trying to gain some knowledge from folks that took it long term, thanks Joe

bkoffman
bkoffmanCLL CURE Hero
in reply to Pooldude05

I did have many side effects, mostly bruising and muscle aches and pains and cramps, plus high blood pressure and brittle fingernails. More on my blog at bkoffman.blogspot.com though it is not very active these days.

may04cll
may04cll
in reply to bkoffman

did afib or hypertension come into play ? I 'm wondering if one could take ilbrutinib last in the course of combo drugs so maybe the heart issues don't arise ?

bkoffman
bkoffmanCLL CURE Hero
in reply to may04cll

No AF, but increased BP. Doubt order of meds is a factor, but age and other cardiac issues are for sure risk factors.

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