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Expert opinion

I’ve just been reading in the forum of Cml Support about the thoughts, research, and the investigations of highly respected medically trained experts, who conclude that Cml diagnosed people are at no higher risk than the general public of contracting Covid 19 yet in the first bullet point after making this comment it finishes with,” we have limited data”, isn’t that the equivalent of “well you should be alright “ are all the health concerns raised on Cml Support a figment of imagination, because according to some experts having Cml is “a walk in the park”. I know my knowledge (medically) is limited, but I will follow my own guidelines, ultra caution.   

Peter.

Hi Peter,

Unfortunately most of us here are not doctors or if not at all. I understand your point about the “not much data”. As you know I’ve been told by a CML expert that is CMLers are at no greater risk than the public because our tablets don’t suppress our immune system like chemo for instance. We’ve been put in the high risk group because we have Leukaemia not CML perse.

I am taking precautions and the advice not to leave home for 12 weeks and distance from the outside world, but I won’t be isolating from the rest of my household stay in doors with the window open I’ll be out in my garden and enjoying this weather. I won’t be leaving my house for 12 weeks. I will be washing my hands when I touch things from the outside ie deliveries and food etc. I will wear a mask, gloves and glasses when I go for bloods. Just use common sense and take precaution. Everyone is at risk so treat it like that, but it gives me confidence to know our medication is so good in the vast majority of cases. If you have CML and another condition then that’s a different subject.

I hope these eases your mind.

Alex

 

 

Hi Alex, many thanks for your reply, I probably read into things to deeply, My thinking is if you have any problem to do with your health, and it means taking medication daily for 52 weeks a year you  can’t be described as same as everyone else.

cheers Peter 

 

I have some thoughts based on experience regarding patients with CML and Covid-19. This is my opinion and so read it with that in mind. It does guide what I do personally.

CML and Covid-19 is not simple to explain in a one size fits all approach, but I believe those who are newly diagnosed with CML and in the beginning of TKI treatment are at increased risk from Covid-19. Those of us who have been in treatment and are in deep remission I believe, in fact, are at less risk.

This is why I feel this way:

  •  At CML diagnosis, our immune system is in terrible shape and dominated by a poorly performing excess of CML white myeloid blood cells. Our hemoglobin is low by this time (hence our fatigue, fever and unwell leading to a doctor visit) as well as a damaged bone marrow. We are very susceptible to disease - especially respiratory disease. In my own case about six months from diagnosis I came down with pneumonia - first time ever I had such a disease. Treatment was successful - but extensive and longer term. It correlates with my growing CML - why they did not do a blood test at that time escapes me (the beginning of me no longer "trusting" doctors). T-cells are crowded out by an overabundance of leukemic neutrophils and inhibited from doing their job. Leukemic stem cells dominate.

If Covid-19 occurred then, I don't think I would be here.

  • After successful treatment with TKI's - the following occurs - circulating leukemic blood cells are wiped out creating a huge void in our blood system forcing our normal blood system to make up the difference. Many of us experience this 'myelosuppression' as our bodies cope with the sudden demand for new blood cells and not enough normal blood stem cells to meet demand. Our normal stem cells begin to rapidly divide and replenish our bone marrow with normal healthy - brand new cells as the leukemic ones are removed. Our immune system has fresh new cells. (same thing occurs during a three day fast, by the way). Old diseased cells are scavenged (apoptosis) and leukemic cells are greatly diminished.

During this time our blood system (immune and red cells) is restored. And since these cells are new in large numbers, they function very well. Assuming sufficient vitamin D is available, these cells are easily activated during disease attack (T-cells primarily in case of viral attack).

  • Patients who achieve successful TKI response and have PCR's below 0.1% are more likely than not to be stronger at resisting Covid-19 than the general public (age adjusted) - all because our blood system is under renewal due to treatment.

Add to this we CML patients by and large are more aware of our health including adding additional nutrients such as vitamin D, magnesium, K2 as well as reading and learning than many in the general population.

There are always exceptions. There is evidence people with certain blood types (e.g. A+) are more likely to experience a stronger inflammatory response leading to lung flooding (hypoxia) during Covid-19, but this is observed in the absence of other anti-inflammatory processes which could also be at work (i.e. high normal vitamin D and C) serving to prevent Covid-19 from damaging the lungs.

Summary

In summary - if you were diagnosed recently and just beginning treatment and have FISH > zero and/or PCR's above 1% - I would be very careful and isolate as much as possible during this pandemic. Covid-19 is dangerous.

If you were in treatment several years and are in deep remission - odds are you have developed a very strong immune system (assuming your vitamin D is ~50 ng/ml - ideally 70ng/ml) which will attack covid-19 virus with vigor.

I personally have zero fear of Covid19. Zero. For all I know I was already exposed and never knew it. I would love to take an anti-body test to know for sure.

(side note: I don't go out and about carelessly. I wash hands more, I avoid direct lines with people and otherwise practice safe hygiene. But I do not wear masks or gloves. I do the same things I have always done during flu season or when someone is sneezing around me. I move away from people)

 

Hi ,

I think that most of us are aware that if we are in major molecular remission then we have a good chance of a normal life span-of course we might meet drug resistance and new mutations on the way but we have now 5 tki s and another ABL001 or Asciminib perhaps on the way in a year or so after trials are complete-as some of those that suffer from blood cancers we are perhaps in a fortunate position compared to many others.

My haematologist suggested that we with CML might be mildly immuno -supressive but the data and evidence is poor;he did suggest to me that when going to give bloods go early in the day when there has been little previous footfall and so one then minimises the possibility of a heavy or strong viral load.affecting oneself should any infected persons have visited pathology department or similar.

We are told that age (being over 70) being male, blood group A (as opposed to O) having comorbidities makes us very much more at risk.However if you look at the current trial going in Netherlands now (Sandy posted this ) imatinib is being offer to one arm of a controlled trial with Covid 19 patients to try to limit respiratory and lung damage;the trial duration is one month so we might soon see what transpires.It might turn out that some tkis actually give protection:we might only hope!

So like you Alex I am taking care to limit myself to exposure to the virus and to avoid GP surgeries hospitals and clinics as far as possible and of course avoid at all times the large supermarkets but life still has to go on so walking gardening reading are all taking place.

Best wishes

John

 

Many thanks to Alex, Skuba and John for helpful knowledgeable replies to my sceptic thoughts, I probably need to introduce half full instead of half empty into my outlook on Cml.

again many thanks. Peter