It was been an intensely dark and painful journey (see cllsociety.org/car-t-blog/ for some of the details), but after two hospitalizations and 3 weeks since receiving my CAR-T cells at the Seattle Cancer Care Alliance (SCCA), I am out of the hospital, walking again and MRD- in the blood on DAY+14. When I entered the trial 45% of my WBCs were CLL. BMB and scans next week.
Now that I am back, rehabilitating and getting back to work from my hotel near SCCA.
More soon, but I am still weak, inflamed and anemic, so I am focusing on my recovery.
Thanks to all who sent prayers and support. I was “gone” for much of the last two weeks, so I apologize if I didn’t respond.
Sadly, as many know, my fellow CLL CAR-T trialist, Lisa Minkove, just 1 week behind me in the same trial, passed from complications of her CRS just down the hall from me in the hospital earlier this week.
A few lessons:
CAR-T is still largely unknown territory.
CAR-T can be very very tough on the body and the soul.
You have a lot of people (even strangers like me) rooting for you! I am a newly diagnosed CLL’er. Perhaps we’ll meet at the Irvine meeting one day? I hope every day you feel a little stronger.
Thank you for posting Brian. It must feel very bittersweet for you especially being so close in both time and location to Lisa.
Please don’t overdo it. Like many of our CLL volunteers, admin etc.... who are selflessly always here for us in times of need-now is the time to look after YOU for a while. Rest up and regain your strength.
thanks for the communication. I have been thinking of you and wondering just how you were doing. I have also said prayers for you and I’m glad that you are on the mend. I do so hope all continues to go well. You do so much for this community You deserve nothing but the best. Please take the time to take care of yourself.
Brian you know how much you mean to us in the CLL Ireland team and to the CLL community here in Ireland. You are a true pioneer and a friend to all. We wish you all the luck and love we can send to you Patty and your family.
Brian, sending you the thoughts and very best wishes of the CLL Support Association in the UK for your continued recovery. You are an inspiration to all of us and deserve all the luck in the world. Take care.
Like many in the community, I have been following your journey with great interest and concern. And with each update, though sometimes harrowing, it was of great relief that you were still in the fight. And thankfully, it appears that you have made it through the worst phase. I wish you all the best and for a speedy recovery.
I will continue to keep you in my prayers. What a roller coaster ride you have endured. Thanks for your brave outlook and for sharing your journey. Sally
Thank you so much for the update, Dr. Koffman. Like so many, I have anxiously watched for updates and it is a great relief to know you are rehabilitating. Such good news!
I only recently became acquainted with Lisa Minkove through Patient Power and videos. What a courageous and beautiful woman, who contributed so much to the CLL community. Her passing must have been so difficult for everyone at SCCA, as it is for so many on this forum.
Wonderful news Brian! Thanks for keeping us posted. I know that can’t be an easy thing to do when you are feeling so badly. Here’s to continued improvement and hoping to put CLL behind your for a very long time.
So very glad you are doing well Brian. Sorry to hear about your fellow CAR-T trialist. Something I heard last week when I was at Moffitt getting my 6th ivig infusion from the patient in the chair next to me was that she was being treated for cll but was talking CAR-T in the future and she said it wasn't for cll-ers? Curious as to what your markers/mutations are however I respect you if you don't want to share..if so you can private message me.
Good Morning Brian....hope today will be a good day for you. Correction: she was being treated for cml and said CAR-T wasn't for cll-ers so, I don't know. I only know I'm Trisomy 12 and unmutated which I thought would be good but I'm an intermediate risk according to Moffitt.
Brian - I'm so glad that you are moving forward! Please really focus on your own recovery. You do so much for so many. Let this be a time to do for yourself (and Patty and the family)! Think of you daily and look forward to positive updates!
Glad you are doing well Brian, albeit not an easy road, best of everything on your journey to remission and cure! As we continue to grieve the loss of dear friend and advocate Lisa Minkove, her daughter asked me to state that the cause of death is unknown at this time. The following is a repost from her daughter Hera's update almost 3 days ago and is still current info as of today’s date: "I will follow up when we know. Something catastrophic. May not have been anything to do with the trial. We will have some sort of answers. Although, it will take time to know the facts. It is devastating. My 💔! My mom suffered EVERY DAY! She was in a constant fight." November 18, 2018, Lisa was officially announced as a Cure CLL Hero 🌹
Brian, we have been anxiously following your progress as all your admirers have been. So glad you are now on the mending track and the worst appears to be behind you. The frosting on the cake will be good scans and mrd- in the bone marrow. You have done so much good for everyone while sick I can’t imagine all you will accomplish when you are well. Now is the time to take care of yourself and mend from that daring, risky and harrowing treatment. Our deepest sympathies to Lisa Minkove’s family. Best, Judy and Jim
Dear Brian, I wish you all the best. You are wonderful. I will always appreciate your help when I was not well. Hope for a speedy recovery. Best wishes Emma Fleetwood
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