Smart Patients Get Smart Care™

The World’s Leading Authority for Chronic Lymphocytic Leukemia Patients

Good news – Under-react

In science and medicine, information is constantly changing and may become out-of-date as new data emerge. All articles and interviews are informational only, should never be considered medical advice, and should never be acted on without review with your health care team.

Lab results one and half years post CAR-T therapy are very good.

My absolute lymphocyte count is low- about 1,000. Not much room for cancer to hide there.

I am not anemic. Hemoglobin is in the middle of the normal range for the first time in forever. My platelets and neutrophils are all in the healthy range.  Bone marrow seems happy and is doing its job with no interference from the CLL or its treatments.

My blood chemistries show normal liver and kidney function. My electrolytes are right where I’d want them.

Only a persistent slight elevation of my LDH ruins my string of “within normal limits”. The high LDH is annoying, suggesting something is afoot, but it’s so non-specific it’s hard to get too upset. And it’s be up for a long time with nothing happening, so I am dismissive.

My cholesterol is great too, around 140. It should be. I’m vegan. And that result was after cheating in New Orleans. I am vegan, but I am human too.

My PSA remains low. It’s bounced around before, but it’s trending down, so prostate cancer is no worry these days.

My stool test was negative for occult blood, a most unpleasant test, and I have a colonoscopy planned for next month for I should be able to take colon cancer off my danger list for at least another decade. Veggie diet helps there too.

Best of all, by flow cytometry, I still have no trace of CLL to be found in my peripheral blood, down to the level of 1 in 10,000 cells. CLL remains nowhere to be found 18 months post CAR-T therapy. This is looking better and better and I am starting to get a whiff of a very very durable response.  The last CLL card I may ever have to play.

Like any dealer he was watching for the card That is so high and wild He’ll never need to deal another.” Leonard Cohen

I should find out if I have persistent CAR-T cells in a few weeks, as I had trial bloods drawn last week.

That all adds up to many reasons to celebrate.

But I under-react.


Stay the course. No change in meds. Yet.

More on my pondering about my next move later.

Leave a Reply

Your email address will not be published. Required fields are marked *

CLL Society - Living With CLL

When appropriate, the CLL Society will be posting updates and background information on the present Coronavirus pandemic focusing on reliable primary sources of information and avoiding most of the news that is not directly from reliable medical experts or government and world health agencies.