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High Flying After My CAR-T Therapy

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I haven’t posted in a while as I have been too busy celebrating my new status. And packing to go home and unpacking after more than 2 months with my cancer road show.

What I am celebrating?

While it far too soon to even consider the C- word- CURE, I can no longer honestly say I have CLL.

This glorious news demands a whole new way to view my life. Can’t be business as usual. Moments like these are rare in life and must be savored and recognized for what they are: A chance to reboot and repurpose my life.

I lost more than the ability to say I have CLL.

There was a physical loss as well.

I dropped away pounds of tumor in the form of the innumerable lymph nodes (to quote the radiologist) that was shrunken back to normal, the bone marrow that now shows” several areas of focal ghost cells and debris suggestive of prior involvement with chronic lymphocytic leukemia” (to quote the pathologist) leaving my marrow’s cellularity patchy as clear sign that a great battle has been fought and won and the enemy soldiers have now fully retreated, and the peripheral blood that show 1/30 of the number of lymphocytes that I had before this all started.

It passed out as does any other waste in our body: in my urine and stool. And my tumor burden was light to moderate. I feel lighter. I need another notch on my belt.

Truly a weight has been lifted.

After 12 years of dealing with CLL, fighting it, cajoling it, and trying to ignore it, I can no longer say that I am dancing with that capricious bear.

I am encouraged that 10% of my lymphocytes are the engineered T cells at 3 weeks post infusion. There are probably many more hidden in the nodes.

They are out there hunting for any stranglers.

There is speculation (no hard data) that the area under the curve, in other words the longer and higher is the CAR-T expansion, the better the outcome. Makes sense. I like the idea.

I will soon shift my focus to what I need to do to keep those chimeric (part rodent) T-cells happy and long-lived in order to prevent the return of my nemesis. Let me be clear, there is no scientific data that anything helps.

I will consult my rheumatologist about what I can do to walk better and with less pain.

I will make decisions around the conflicting information about how to treat an asymptomatic small pulmonary embolism (blood clot in the lung) as I already have an increased bleeding risk from ibrutinib.

I will eat more Cajun Gingerbread to build up my depleted iron stores from all the bloodletting, AKA, lab tests over the past 60 days.

I will miss the wild salmon so ubiquitous in Seattle as I get back to my Socal vegan ways, but I can rebuild my weight with home cooking.

I will start swimming and frequenting the gym now that the PICC line is out of my arm in order to regain my strength and wind.

I will reexamine my life and decide what this second chance portends, but right now we are still in celebratory mood.

And as so many of you have been there with me and my family in the highs and the lows, like the Beatles who sang” we’d love to take you home with us, we’d love to take you home” I would love to share some of our amazing non-stop fun.

Much of it involved eating – mostly salmon. One example is Ivar’s Salmon House, built in 1938 to resemble the First Nations’ longhouses. The salmon is cooked on alder planks.

We also ate their original recipe fish and chips outdoors at their Pier 54 location.

We took a ferry to Bainbridge Island where we saw specular views of Mount Rainier.

On the island, we took a “forest bath” on Bloedel Preserve.

We toured an old “mosquito boat” that plied the waterways nearly a 100 years ago and was the way mail and people and goods were transported in Seattle in the early 1900s.

And we took a short scenic seaplane trip taking off from Lake Union, just a short walk from the cancer center.

We would see the planes landing and taking off every day and a 20-minute scenic loop over Seattle seemed the fitting way to remember our journey and a city we grew to love.

Boeing built his first plane on Lake Union, a seaplane.

The take-off and landing were so soft and the low flying plane with ‘above the window’ wings (a Dehavilland plane- the Canadian company was based near where I grew up in Toronto) reminded us what a thrill and joy flying can be.

And we are still flying.

Hope you all get to join me.

22 Responses

  1. Congratulations Doctor Koffman! At my follow up visit at Moffitt after my bone marrow and lymph node extraction there was much talk of your success. You have lifted a lot of spirits.

  2. Dr. Koffman, I could’nt stop tears coming to my eyes as I was reading your last post. Knowing too well the burden of living with CLL everyday (for 12 years now), your “new found freedom” is bringing up deep emotions, as we are hoping to see this amazing day, and celebrate just like you do.
    You deserve to celebrate strong, just like you were, all along your battle!

    Sincerly,
    France and Mark

  3. Congratulations, been reading and watching from afar, but so happy for you and your family. Thank you for keeping us posted on this unusual but beneficial journey. Your words provide Hope to those with this crazy disease. We can all use a little Hope along the way as this process has had its ups and downs. I still am not doing any western medicine, using Chinese herbs and electro acupuncture along with a cleaner diet. I wish you safe travels and a big welcome home to family and home cooking. Your story is inspirational to me and gives the sense that all my efforts at staying healthy are worth it, that there are good outcomes available in this discovery of ways to bring our bodies back to normal. I would presume that your hugs last a little longer and that you truly have lived the words that Tim McGraw sung, when his sings “Live like you were dying”. All my best Thank you and take good care.

  4. Keep flying Doctor, we are all flying with you! So happy….so in awe of what you have done. God bless you in the next part of your journey!!

  5. So darn happy that you’re doing so well!! You’re a blessing in so many of our lives. Bless you.
    Enjoy life!

  6. Great post! I’m delighted you enjoyed our beautiful Pacific NW. Still rejoicing in your successful path through CAR-T therapy. Keep on flying!

  7. Hello Brian.
    Jolly well done.
    I must admit to having a bit of envy, however, its not pathological nor related to, in psychoanalytical terms to any deep seated p**** envy. Ha ha. I would refer to it as being good envy., if there is indeed such a concept.
    Thank you for the positive comments which you kindly made about me to Jan and Michael in Dublin, which I very much appreciated. Thank you Brian.
    I am 67, like yourself and so spent our formative years in the glorious 60s in the UK. The Beatles, The Birds etc, etc, etc…… Great times eh. Also My ex partner and mother of my two daughters is Patty, who lives in Nottingham. I like Jungs writings about synchronicity and such meaningful coincidences.
    With Every Good Wish to you Brian.
    Maurice.🌈

    1. When I was sickest with the CRS and on high dose opioids, I had all these bizarre archetypal Jungian images. Very vivid and organic and mostly pleasant.

  8. Fantastic news Brian! What were your markers when you began the cll journey?
    Best wishes for continued wellness,
    Dianne

  9. What a fantastic post! Enjoy and celebrate your new life, Brian. You are a warrior of limitless proportions.
    I had no idea that you were a fellow Torontonian – we’re a tough lot 💪 you are certainly proof of that.

    Best,

    Fell

  10. It appears that you certainly had an encounter with the vasty deep of the unconscious, albeit, resulting from opioids, which I suspect can open a porthole to the deeper, hidden recesses and realms of our mind. As I have an interest in such phenomena, I am wondering if you were able to attach any meaning to the imagery and patterns which you saw and felt during your “mostly pleasant” experience? The dichotomy between science and religion is not so far apart these days. It’s still there but from my understanding, there is a tolerance and appreciation of the others point of view, and I believe that the gray area between is one concerned with meaning. Whilst meaning cannot be measured nor quantified, it strikes me as being so vital to us. Of course, many of Jungs patients were middle aged and looking for meaning in their lives. I could develop this but will restrain. 🌈

    1. Where I went when I was “gone” was a verdant museum in the rainforest. Lush and moist. I was there for an interview. I need to revisit that place.

  11. Dear Dr. Koffman,
    When we or a loved one is first diagnosed with a life-threatening disease, we grasp for new ways of being. Thank you for taking us on this journey with you and providing a light in the darkness so we can find those ways easier.

    This is such a thrilling time for you and your family – I am so happy for all of you!
    All the best to you!!

    Diane

  12. Brian, The joy in your writing is overwhelming! I have followed you for many years and am so excited for you and your family! You give me hope that one day I will lose the weight of this monster. I applaud your sharing! and I love your courage! May we all fight this together and share the information we each gain on our journey! G-d Bless and may you enjoy this blessing you have been given.

    Adam

  13. Brian, your story is amazing and I’m happy not only for you, but for the hope this gives to all with CLL. Thank you for sharing your experiences!

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