covid 19 threat to cml patients real or hypohtetical?

Hi David,

I have a working hypothesis regarding CML patients and Covid-19 risk. I would be very interested to learn how many CML patients in remission (CCyR) were hospitalized with Covid-19? I have a suspicion - none.

Patients who succeed with their TKI in reducing CML to cytogenetic remission probably have a very strong "new" immune system. My idea is that at the peak of CML at diagnosis, CML patients have a largely leukemic blood system and as a result are very susceptible to disease. But once their TKI reduces tumor burden to complete remission (CCyR), their normal blood system replaced all (most) leukemic cells with brand new immune cells. This replacement produces an invigorated immune system that is stronger than before*. In a way, TKI's force healthy blood stem cells to "fix" the blood system wrecked by CML. I use fasting to stimulate this same response.

I believe "we" CML patients in remission are more resistant to Covid-19 (and other infections) than the general population! Of course it depends on our vitamin D status (vitamin C, zinc, and other co-factors) which helps our immune system do its job. But, I for one, have zero fear from Covid-19. My immune system is remarkably strong (no cold, flu or cough since diagnosis/remission).

It's a theory on my part, but one I am developing confidence may very well be correct. How ironic that CML could very well have protected us from Covid-19 dangers.

(* The opposite is true for patients who have yet to reach CCyR (i.e. FISH = zero). Newly diagnosed patients and those who are not responding will with normal blood counts are likely at higher Covid-19 risk and should take every precaution)

My wife's a nurse and has continued to go into work and has had it, quite badly, still struggling with fatigue etc.

Although I've been trying to shield, there's a limit to what you can do with two young kids as well, and I'm very surprised that I didn't get it. But I didn't. My children didn't have any symptoms either.

I assume that reallity will kick in once we all start going out as it becomes official from tomorrow that we are allowed to go out.  

I am not sure anyone has suggested we are immune. The subject was meant to be a discussion of the risk compared to the general public. Are we at a major risk of of death if we as much as leave our homes was the line i was going on.

I certainly do not intend getting on a bus or visiting a supermarket but i will now go for a short walk where i know there are few people and i will still keep my distance. They say the infection is now is in one in 400 so i am prepared to take the risk but others need to make their own assessment. I am female, in my 50s and not obese so i will take that into account too. 

I believe people in remission (PCR < 0.1%) who have normal blood counts not neutropenia are likely at lower covid risk especially if there vitamin D level is above 50 ng/ml. And to be clear - neutropenia (which I suffered severely from early in my CML treatment) concerns neutrophils - which attack bacteria predominately and are not involved in first line defense against virus' although are certainly involved in follow on bacterial attack due to viral damage. Lymphocytes - T-cells, in particular are what fight virus and provide later immunity. T-cells may be affected (in terms of performance) during beginnin CML even though CML is largely a myeloid disease.

• Fujimiya Y, Chang WC, Bakke A, et al: Natural killer (NK) cell immunodeficiency in patients with chronic myelogenous leukemia. Cancer Immunol Immunother 24:213–220, 1987.

But this is an old paper where the etiolgy of CML was poorly understood.

Interestingly - a later paper in 2005 cites that neutrophil performance is largely unaffected by CML

• https://www.cancernetwork.com/chronic-myeloid-leukemia/chronic-myelogeno...

but this is also and old paper before much was known about TKI function and later bone marrow response.

What we do know is that our blood system is replaced following successful CML treatment where patients respond and eliminate CML progenitor cells from their system.

My point above is during the process of eliminating CML from our systems such that CML is below detection or nearly so our white blood system gets replaced with new 'healthy' stem cells and subsequent daughter cells including neutrophils - (and lymphocytes as well). It is this new white blood system which confers added strength to our overall immune system.

Dangerous talk? Hardly.

@Scuba. I enjoy your posts. Please don’t stop. 

I appreciate the posts that Scuba puts on here. The information has given me the ability to look into some of the ideas he posts. That provides the wonderful option of learning and researching the various topics myself. This process has actually helped my treatment.

Likewise I have appreciated posts from other members as well for all the same reasons.

Thank you Scuba and all who share.

Additional information on Covid-19 and CML (from American Society of Hematology)

• https://www.hematology.org/covid-19/covid-19-and-cml

COVID-19 and CML: Frequently Asked Questions updated 21 May

(Note disclaimer: https://www.hematology.org/covid-19#disclaimer

This forum has been an excellent source for exchanging ideas and experiences - especially controversial ones. Often in controversy, however, discovery  can occur. For those who have great fear and ignorance following "government experts" is your proper course. I completely understand.

I am a scientist with medical background living with CML for over 10 years. I experienced severe neutropenia (<0.1) putting me at incredible risk during the early days. Imatinib crushed my blood system without doing much to lower CML when first prescribed. I was entering accelerated phase with multiple chromosomal abnormalities in addition to bcr-abl translocation. My "expert doctor" wanted me to increase dose of Imatinib. Stay the course, keep following the "protocols" and what is "accepted" is what he advised. It was then I decided to study and learn - as fast and as deeply as I could about CML and learn about other "ideas" from other "experts" and non-experts alike - and change doctors. These people were Ph.D's and non Ph.D's in research not in government and not in clinical trials with big pharmaceutical companies.

It was through them, piecing together real and anecdotal data and observations that informed my course of action. It was through this painstaking digging in every paper and related source I could find where I learned about Curcumin, vitamin D, magnesium, and other non-drug support for CML as well as the biochemistry of CML in terms of gene expression, proteins and pathways  (and it continues to evolve).

I was able to stabilize my disease - remarkably so - blast counts fell and accelerated phase avoided. I sought out a prescribing doctor who is an "expert" researcher in CML. It was this scientist who prescribed low dose dasatinib to me. He told me accepted FDA protocol for dasatinib is 100mg, but he felt that in my case I should take 20 mg; he saw data suggesting 100 would be too much in my case  - he asked me if I was o.k. with that? He wanted my approval to go outside the box because it wasn't an accepted protocol. More learning occurred. I went outside the box. He also wanted me to avoid "stim" shots to improve my neutropenia and instead stop, start, stop therapy to rebuild my normal blood system. He felt stim shots stimulate the cancer in addition to normal blood. This was all outside normal protocol at the time.

I went months without any dasatinib during this period  puzzling my doctor - no increase in CML?  while my blood counts restored. I told him about my nutrition support. He was intrigued. When I restarted dasatnib at low dose, my CML plummeted and ultimately disappeared from detection. I became PCRU while only taking 20 mg dasatinib.

I share my story, experience and learning with people on this forum in the spirit of exchange with those who want to think and ponder and consider. Fear is a powerful motivator to give up control to someone else - whether government, "experts" or other people in authority. My only purpose is posting here is perhaps to lower the fear through understanding. And I appreciate very much the other "posters" on this forum sharing their ideas and experience. I learn from all of you.