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Day 27: Restaging Tomorrow and My Ruminating on How We Chose to Treat CLL

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CAR-T therapy is not easy. Even the easy parts are not that easy. Most good things in life are not that easy. At least for me. They take work.

I am continuing to mend but still find walking a real challenge. Knees are inflamed and muscles are weak and tight and sore. As L. Cohen said: “I ache in the places I used to play.” Today I walked the two blocks up and down the hill to the Seattle Cancer Care Alliance for the first time since I got home from the hospital a week ago. I was at my limit but I did it. I will do again tomorrow.

And I still have this weird thermal dysregulation that nobody warned me about. Then again, no-one warned me about the severe arthritic flare and its slow recovery, but that was because no-one had seen it before. This temperature issue was appreciated if not fully understood as part of the cytokine release package. IL-6 and IL-1 are two cytokines that effect the hypothalamus and regulate body temperature. My IL-6 shot up to 1286. It should be in single digits.

These wild flings of inflammatory chemicals have their impact.  My temp reads 97, I feel cold and yet I soak through 1 to 5 T-shirts per night with drenching sweats. Makes sleeping tough. I am told it could take months for this temperature thing to fully calm down.

Appetite and gut are all back to normal off those nasty opioids. I have started to gain some weight and some muscle tone with my exercises from PT and OT. And doing some light work at the gym.

My anemia has climbed from a HBG of around 7 to over 10 in just the one week since being home. Credit Patty’s Cajun Gingerbread. And a healthy bone marrow, cleared out of CLL that had occupied most of it, now with plenty of space on the factory floor to made red blood cells. But I still get tired and winded with walking, but I will push through.

We have been in Seattle since the end of February and we are ready to get back home to see family and friends. It wears on us being in a hotel room, albeit a nice one. Even miss our pesky cat.

Tomorrow is a propitious day. I get my bone marrow biopsy and CT scan with the promise that my nodes and marrow can join my peripheral blood in the joys of being CLL free. Also get a ton of blood tests. And more the next day.

I will share the results as soon as I know them. But as I have explained before, I am very upbeat about my response.

When I get the deep and durable remission that I am anticipating, it will have all been worth it.

In chronic lymphocytic leukemia we all have different courses. Some never need  treatment, some if smart and lucky with their choice of first therapy can have remarkably long and symptom free remissions.

Then there are those of us, who have relapsed after good or not so good responses to one or many therapies.

For that group, where I belong, I see we can artificially divide how we chose to manage our CLL into two patterns.

The first is:

Kick the can down the road as far as you can, and if you relapse, then try whatever is the next best thing at that future time and give that can another hard kick. This is a smart strategy in CLL where the therapeutic landscape is improving so quickly, but the risk is that the relapses may come too soon and new options may be limited.

The second is:

High risk, high gain. Looking for a card that is so high and wild, you would never have to deal another (with apologies to Leonard Cohen) Reaching for the flame thrower. Unleashing the new or genetically modified immune system. Going for a cellular therapy such as CAR-T or stem cell transplant in the hopes of “one and done”. Surviving the treatment. Recovering from the dark journey. Seeing the CLL fading in the rearview mirror.

You know what I chose.

More soon.

Stay strong.

We are all in this together.


17 Responses

  1. Onward and upward.
    A question if you have a moment: if someone has done CAR T and it doesn’t work is it possible to go to Venetoclax with the expectation of average PFS for relapsed CLL with whatever markers exist?
    Your CAR T sounds like it’s coming along a treat.

    1. V is a real option post CAR-T but I doubt there is much data out there on it. There are so few CLL CAR-T patients.

  2. Hello Brian, Mark and I are following your Car-T blog every day, as you write it. And we can’t believe what you are going through. It’s crazy, almost too hard to read. We are shaken by each new physical challenge you have to face. You are a model of determination and strength.

    We were shocked and very sad to read about Lisa. It makes the reality very hard to accept. But it’s different for everyone, in or out of any clinical trial or treatment regimen.

    We encourage you to stay strong and keep your focus on the goal because we really are in this together.
    Sincerely, Mark and France.

  3. Good morning Brian great to here things are heading in the right direction although slowly I believe you will get there , my hopes and prayers are for your clean bone marrow , all of those bad behaving B cells , the mutant monoclonal hoardes are dead washed out of your body forever, thank you Brian for being a brave pioneer for this treatment, someday your steps into the unknown outcome could very well bring a cure for many of us !!! I am currently blessed with a five year remmission from BR TREATMENT. 11Q del. From what I understand that is pretty good , But thank you very much Dr Koffman you are brave soul and a inspiration to many of us!!!! Joseph t baudino. Jacksonville Florida

  4. Phenomenal post, Brian.
    Keep up the good fight – I will be rejoicing with you when you reach full remission!



  5. Hi Brian,
    I am following your blog with interest, as I have recently been diagnosed with CLL at the tender age of 38 years! Wherever I turn, I feel like the ‘teenager’ among the other patients. I am superstitiously avoiding to google anything related to ‘prognosis’ or to even think about ‘down the road’… I already joined a clinical trial of ‘ibrutinib + venetoclax’ and hope for it to render me MRD negative so I can enjoy my beautiful family and live to see my 18 month old grow up into adulthood and beyond… I was curious what the medical world knows about CLL in young patients as myself? Are there any genetics involved? Are the treatment options different? Would appreciate some insight.

    1. Yitty,
      There is good reason to be optimistic. The V+I combo when used in treatment naive patients such as yourself can knock down and out the disease for years. Since these are new drugs, the longest data we have is about 7 years but that certainly is encouraging. I think Mayo is doing some work on young people with CLL. Let me ask around. Stay strong

  6. Trusting that the BMB & CT will show very reassuring results.
    Amazing that you have recovered to the point of analyzing, organizing and publishing such concrete and
    helpful information about your journey with CAR-T. Thanks for sharing !

  7. A heartfelt “YAY!!” to you, Brian. Great to hear you are coming out the other side of a tough journey with such great results. Here’s to many more years of good health for you.

  8. Wow, congratulations on kicking that CLL can down the road, Brian! You are smart and strong, and a pioneer for us all. Thank you, and enjoy your amazing new lease on life!

  9. Hey Brian, like everyone else, I too have been following your progress. It does sound as though you have been through more than I would’ve anticipated would be necessary. Extremely happy that that you have survived it and generated such a powerful, life-changing result!

    A few questions: 1) What was your WBC at the time you started the CAR-T? 2) You mentioned issues with your knees, suggesting it was an arthritic response. Are you saying the CAR-T treatment exacerbated your already existing arthritic condition, or was this completely new and resulting from the treatment? 3) I’m anemic at this point myself (treatment naive and have just started the Ibrutinib + Venetoclax trial), with HGB fluctuating 8.5 to 9.5. I’m also from Louisiana, so I was wondering if Patty would mind sharing her recipe for Cajun gingerbread? That sounds like just the ticket to help me right the HGB ship.

    I look forward to hearing more on the blog and seeing you both again at some future CLL Society meeting! Keep on truckin’ brother! Very proud of you!


    1. My ALC was only slightly elevated, under 10 at the start of the trial, but my lymph nodes were enlarged and “innumerable”. BM was at least 1/2 CLL too. Cajun Gingerbread recipe is coming, but it mostly helps replace low iron stores, won’t help if your marrow is crowded. The CRS or something flared up arthritis. Big time. Not really understood at this point. Thanks for your kind words. V+I is a strong choice.

  10. Congrats, Brian! I believe you are well on your way to complete recovery.
    I underwent CAR-T cell therapy back in 2015 in Seattle. I was admitted to the clinical trial even though I did not have enough CD-19+ B-cells. It saved my life at that time and gave me 2 years more. My CLL came back and now I’m on Venclexta+Ibrutinib. My swollen lymph nodes were gone in a few weeks.
    I am scheduled to get bone marrow treatment at Stanford, doctors say I have accumulated too many mutations I need a new bone marrow. My sister is my match.
    I am anxious getting a BMT knowing that survival rate for CLL patients is only 40%. I’d like to hear your thoughts on this. Do I stand a better chance getting it done in UCSF? Seattle is out of the question, logistics and far from home and support from my family and dogs.

    1. Hi Maria,
      Sorry to hear of your aggressive CLL. BMT can be curative for some with CLL but tough. Let’s talk about your decision. Email me at [email protected] and let me know some times that might work and the best number to call.
      There is published transplant survival data available online.
      Stay strong.

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