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News from the Recovery Front: I Got to Admit It’s Getting Better

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Let me start with the good news. And it’s almost all good news.

The deep sequencing of my bone marrow showed no copies of my CLL cells’ signature.

Let me explain what this means.

When my marrow was loaded with chronic lymphocytic leukemia before starting my CAR-T therapy, in this experimental lab test they identified sequences of DNA that were unique to my cancer cells from the bone marrow biopsy.

When they looked at my marrow again four weeks after getting my CAR-T cells, they could find no such similar markers, in other words, no trace of the cancer or MRD (minimal residual disease) negative.

This test is at least one log and maybe two logs deeper than my prior MRD testing by the more conventional and common flow cytometry (FC) testing.

FC works by looking at the surface markers on cells, their immune-phenotype or fingerprint. It is touted to detect one cancer cell hiding among 10,000 other cells.

In comparison, the experimental sequencing test is said to be able to find one in 100,000 or maybe one in a million, though many opine that the one in a million is wishful thinking.

Both tests for MRD are not perfect because they are susceptible to sampling error.

Did they biopsy the right spot? Is there CLL a centimeter away that the needle missed?

Here’s an analogy courtesy of Dr. Kipps.

Think of a drawer full of dozens of white socks with one solitary red sock. You close your eyes and grab a handful of socks. You look with your eyes for the red sock. You use a microscope to check for any hint of redness in the socks. You do chemical analysis of the socks to search for traces of red dyes. If you only grabbed white socks, no matter how closely and carefully you looked, you would never see any red. Sampling error.

That said, I refuse to let Dr. Kipps rain on my parade.

First, all biopsies carry the risk of sampling error, and CLL is usually (not always) diffuse in its presentation. We make decisions based on the data we have.

Second, and most importantly, all the Seattle patients in my trial who have reached this depth of remission have not relapsed in follow-up.

Now the follow-up is admittedly short- Maybe 18 months, maybe a big longer, but I am still celebrating.

These are the best possible results that I could have gotten. Why not rejoice!

More good news.

My liver tests are back to normal and my LDH is almost back to normal.

I think I know the reason. I stopped the subcutaneous self-injection of low molecular weight heparin for my asymptomatic pulmonary embolism.  It can cause those enzymes to jump up. My doctors were split on my need for it and when the local pulmonary specialist said he wouldn’t have started me on any anti-coagulant therapy, I had heard what I wanted to hear (til the man hears what he wants to hear and disregards the rest– The Boxer by Paul Simon).

Truth was that as I was already on ibrutinib, I was much more worried about a bleed  from the combining of the two drugs that “thin the blood” than a clot, though not everyone agrees with my analysis or decision.

My lymphocyte count remains nice and low at 1.1 as would be expected when one has no B-cells that make up most of the lymphocyte population. Those 1,100 cells better all be T cells and it would be super if some of them has some mouse gene in them, in other words, my CAR-T cells .

My platelets and neutrophils are at healthy levels.

Dr. Kipps’ magic finger palpation of my lymphatic system left him “impressed” with the shrinkage of my lymph nodes in my neck, armpits and groin. My liver was normal size and my spleen has not grown back. Kipps’ exam was all normal.

My knees are still sore. I can walk, but not far or fast and not without pain. I use a wheelchair at the airports.  Simple meds like Tylenol or topical Voltaren help. It is clearly getting better with time, exercise and physical therapy.

I am still anemic. My bone marrow took a hit when the CAR-T cells launched their attack with significant collateral damage. The microscopy of the marrow showed patchy areas that were full of ghost cells and debris where there once were aggregates of cancer cells. The marrow needs time to expand into those areas and recover its full productive capacity. That is complicated by the fact that I am definitely iron deficient, meaning that the factory is missing one of its basic ingredients needed for making red blood cell. The low iron was surely the result of the bloodletting from all the testing during the last few months. I figure they drew off about a liter and a half of my blood, which is about a quarter of the total blood volume. As a vegan, there is plenty of iron in my diet, but it is poorly absorbed. If Cajun gingerbread can’t fix the problem, I’ll go on iron supplements – ferrous sulfate 325. Take them with OJ or Vitamin C to improve absorption and with a stool softener to counter their constipating effects.

Even though my anemia is mild, I do tire easily and get lightheaded if I stand up too quickly.

But overall: I’ve got to admit it’s getting better, it’s getting better all the time.

Time to start planning what to do with the rest of my life.

I have been given too great a gift to squander.

5 Responses

  1. You ARE the boxer …….and you are/were not running scared or laying low. Wow! …. how you bravely fought this good fight. And you richly deserve the great gift you don’t want to squander. I know that won’t happen. You are Brian Koffman for crying out loud.

  2. Hello Brian,
    That’s a long posting and It’s lovely to hear that all is now looking so very positive and that you are now planning your future life, sans CLL. I hope, as I expect many others do, that you will continue with the CLL society, in time.
    In my last message, I asked you about meaning. I think that I was hoping that you had received some message from God for us all to hear.😊 I don’t have any interest in on line psychotherapy regardless of how my question may have appeared. I was just interested. Meaning is so very personal to us individually and one hat doesn’t fit all. For myself, religious belief is true and works. I appreciate that your blog is all about reality stuff and everything assiociated with the biology and treatment of CLL and really not about philosophy, metaphysical and psychotherapy, as interesting as it is. On a positive note, I have achieved membership of the Irish Psycho-Social Oncology Society, for professionals interested in such matters. I will hope to bring into focus, from my membership, some of the mental issues associated with CLL.
    That’s about all. Please keep giving quotations from songs, which are really very, very good.
    I would appreciate it if you would delete this message after reading. 🙏
    Happy continuation in and with your bodily healing.
    Maurice Furlong

  3. I assume that your lymphocyte free status will be a permanent feature from now on? Does this mean that you will require periodic injections of immunoglobulin?

    1. Quite possibly if the engineered T cells persist. I was already getting them due to my ITP, so not change there. I do have T lymphocytes, just no B cells.

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