April 5, 2018
Hi, All. Patty here with a very brief update: Brian was discharged from hospital on Monday afternoon and we were euphoric: His re-engineered T-cells were proven by blood test to be viable. He had been briefly sick, but not too sick… a couple of days of fever and chills, followed by forty-eight hours fever-free… all labs were trending in the best possible direction (and continue to do so) … so they prepared us for discharge, described what symptoms to be on the lookout for, when and how to report them (should any appear), then gave us the go-ahead to skedaddle.
It is amazing, reassuring and touching to see how conscientiously the immunotherapy teams here probe for answers, and how much they care about the patient experience. It’s thrilling to think that whatever is learned from Brian’s willingness to participate in this clinical trial (like those brave patients who’ve walked this path before him) will be added to the body of evidence and will move the understanding of CAR-T forward for the benefit of CLL (chronic lymphocytic leukemia) patients.
I will leave the reporting of the intricacies of the medical evidence to Brian, and believe me, he will delight in giving you the numbers and explaining what they might mean to CLL patients when he feels up to it.
Which brings me to my next piece of news: For the past 3 days, he has had extremely painful muscle spasms, most likely caused by less than adequate physical activity during his hospital stay. No one thinks this is related to his CAR-T therapy.
Regardless, it has been quite debilitating.
Physical therapy is on for tomorrow.
We should let him rest. More soon… Patty
Hi Brian, Patty, Heather, Will & Family,
Thank you so much for sharing the news of your CLL journey, especially this CAR-T trial experience !
It has been encouraging to understand the why and how of what is happening, and in your sharing, it will
help all of us reading your story. The Car-ty comic book was wonderfully understandable.
Brian, you have been so faithful in helping us and more CLL patients and caregivers than you will ever know, from your personal notes, advice, and reassurances, to all your CLL Acor list postings, and the CLL Society, and your talks across the USA, world, and web, helping to get support groups started and putting all kinds of information “out there”. So, a very public THANK YOU, to you and your family for ALL you have done and are doing !!
With deep gratitude and daily prayers for continued success on your CAR-T journey…from Shirley (small town VT -RN advocate), and Allen (KY. Dx 2005, chemo-2010, entering 4th year of ACP-196 trial with Dr. Byrd-OSU.
So happy to hear the progress Brian is making.
Sorry to hear about the muscle spasms, but overall Patty, your report is extremely encouraging. I am thrilled for both of you!
Good news Patty! You all hang in there, you are doing great!
Thank you so much for the update! Brian is in our thoughts every day, and we are all rooting for him. I hope the mystery of his muscle spasms is solved soon.
Hope all is going well. Thinking of you daily.
It is hard to type with my fingers crossed! Brian thanks for your Bravery! G-d Bless!
This made me (Patty) chuckle!