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Many years ago, I was lucky to briefly befriend Ram Dass. I learnt much from our short time together, including what matters is not what we say or even what we do, but who we are.
He was a great raconteur who had shed all his “holy man” trappings- “I don’t do white robes he told us”- in favor of doing good works in trousers and sweaters.
As I said, I learnt a lot at his feet. And so did many others.
He pushed limits and questioned the status quo and made many mistakes along the way.
As I said, I learnt a lot at his feet.
I lost that old friend earlier this week- but just his ego, not his soul as he would have reassured us.
A few weeks ago, I also learnt that some millions of other friends, the clonal army, my CAR-T cells went missing in action sometime between 12 months ago when a few stranglers were last seen on a blood test and the same test at 18 months when they were nowhere to be found. They were my guardian angels, playing whack-a-mole with any leukemia cell that might dare try to rise from the battlefield where their cancerous army had been decimated, no prisoners taken, no survivors left as in the biblical commandment to obliterate the nation of Amalek (timcheh et zecher Amalek). Don’t let them rise again.
I will miss the reassurance of having those cellular scouts and serial killers on 24/7 duty in my blood and lymph and marrow.
Likely they are gone because there is no work left for them to do, no cancer to be found and slain.
Or maybe they just died off- they were after all, outsiders, chimera, recognized as strangers and shunned by my immune system.
Another possibility is that a few still might linger below our ability to detect them, maybe in my nodes or in the bone marrow.
Which brings me to the next part of my story.
One month after my CAR-T, a CT Scan showed that “all my lymph nodes had shrunk to normal size of less than 1.5 cm in the largest diameter, except for one around my left external iliac neurovascular bundle that was an annoying 1.6 cm, meaning my remission was only partial, a PR, not complete or CR.”
The consensus is that some nodes when they become enlarged never revert back to “normal size” due to scarring. This notion is reinforced by a few studies where they biopsied enlarged nodes and found no CLL. There is no clinical significance to these marginally enlarged nodes and likely they do not mean much in terms of prognostication.
My first imaging (MRI) since leaving Seattle for home post CAR-T was a few weeks ago, about 21 months post CAR-T and it found “that all my lymph nodes had shrunk to normal size of less than 1.5 cm in the largest diameter, except for one around my left external iliac neurovascular bundle that was an annoying 1.6 cm, meaning my remission was only partial a PR, not complete or CR.”
Sound familiar? The one iliac node was essentially unchanged and all the other nodes were < 1 cm in size. No new adenopathy or enlarged nodes. YAHOO!!!
My CLL has typical reemerged from its hibernation in my nodes and less so in the blood, which is a pattern that also can be seen when relapsing after CAR-T, but now there was no cancer to be found in my imaging or by palpation of the nodes in neck armpits and groin.
What about the last lab tests?
My latest flow cytometry a few months ago showed no CLL in the blood down to one in 10,000 cells (U-MRD-4 (Undetectable Minimal Residual Disease to 10-4) and a bone marrow biopsy 11 months post CAR-T also showed no CLL at the same level of testing.
Am I done?
The next step is to check if I am U-MRD-6 in a bone marrow biopsy (BMB) by looking for the DNA sequence particular to my CLL captured when my marrow was loaded with clonal B cells. This test, ClonoSEQ can find a cancer in one a million cells. Much deeper than U-MRD-4.
That should happen next month.
If that too shows no cancer, does that mean that I am cured? No, but it is a possibility, cure is still firmly on the table as long as I remain U-MRD-6 and my scans are stable.
It is definitely a step in the right direction.
Those who know me have heard me say that you can’t get to CURE without passing U-MRD and U-MRD-6 is as good our present technology allows.
If my BMB is negative, I will likely stop my ibrutinib, my other guardian angel that has blocked my cancer from its life sustaining communication with other cells for close to 8 years.
That will be a bittersweet farewell. I will of course be celebratory of the news that I am cancer free, that I am well enough to say goodbye to the experimental drug that saved my life. But I would be lying if I said I wasn’t a little afraid of not having my BTK blocked by taking a few well tolerated albeit very expensive pills a day.
I will try to not get ahead of myself, I will try to remain ZEN, but the future is pretty exciting.
Stay strong, we are all in this together.