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NCRI CML Subgroup Recommendations re: COVID-19


Given that CML has now been included in Public Health England's list of 'high risk' groups, the CML subgroup publication of the recommendations will be delayed while clarification is sought about why CML has been included as high risk. It is hoped that by the end of this week we will be able to share a more complete and up to date list of recommendations on this forum. Meanwhile, our advice is that you should follow all precautions that apply to the general public.

Should anyone be worried about TKI therapy placing you at an increased risk of contracting COVID -19, please contact your CML specialist for reassurance. It is certainly not advised that anyone should consider stopping therapy or reducing their dose as a preemptive/protective measure.

Data gathering:

* At present there is little data on CML patients who have contracted COVID-19 and given the peak for infection has not yet been reached in most regions/countries it might help us all for the future understanding to help gather/collate CML patient specific data. The NCRI CML Subgroup and the iCMLf are interested in collecting details from CML patients diagnosed with COVID-19.

If you would like to help then please email your treating clinician/haematologist, as well as iCMLf at with your details including:

* where you are being treated- region/country

* how and when you think you were exposed to the virus

* how quickly your symptoms started to appear after exposure

* how long it took for you to be tested and have your case confirmed as COVID-19

* your symptoms in order of appearance - temperature; headache; muscle pain; cough; fatigue etc.

* the level of severity on a scale of 1 - 10 (10 being most severe)

* how long your symptoms/infection lasted

* description of your experience 

* any other relevant information you might think is helpful

Note: it goes without saying that you should only contact iCMLf and/or your CML clinician if you have had COVID-19 confirmed by a positive test.

Thanks Sandy. Any news about CML being included in Public Health England's list of 'high risk' groups?

Yes, today it was made clear that CML will remain in the 'high risk' category according to Public Health England. Apparently they have chosen to err on the side of caution.

Please see the NCRI recommendations now published and pinned to the top of this page.

It also seems that all of us diagnosed with CML will be receiving letters in the coming week/s to self isolate for 12 weeks! 



Self-isolation (self-quarantine) for 12 weeks is recommended for at-risk individuals, but in our medical opinion, the diagnosis of CML or treatment for CML alone does not fall in this category.
What I understood is that patients with cml over 70 years old have more risks for infections..
So all patients that take tki and cml is under control and have no other health problems are not in high risk categorie..

Thank you, Sandy.

At my GP's Patient Online Service, the following has been added to my record:

Coded entry High risk category for developing complications from COVID-19 infection (Y228a)

I suspect that the message is generated automatically for those who carry a code for chronic conditions such as leukcaemia, diabetis, COPD ...

Therefore, this may be a primary care decision rather than a haematology decision. 


This is very interesting. My oncologist is Dr. Harry Erba at Duke University in North Carolina; his name is mentioned frequently in the research articles posted at this site. He said that CML does not compromise our resistance and that my chance of getting it is just like the general public. He explained in greater detail than I could comprehend why but added additionally, it’s a virus. Let me interject here that I’m usually not so non-attentive but he had just shared good news with me about my condition and I was so elated.

I also discussed my most recent MOHs surgery to remove a squamous cell cancer on my face. I shared my concern that with CML I might be dealing with them constantly. He said that it is a possible side-effect with one of the other treatments but not imatinib.

I certainly am not encouraging anyone to go against the instructions of their oncologist. I am just intrigued by the differing opinions. 

Just to try and be as clear as possible in what is a very confusing time for all of us. There may be a difference between 'medical opinion' about the risks of infection with CV-19  for CML patients and the official advice from the UK National Health Service and other Health Agencies in other countries/regions.  The categorisation of high risk for individuals (no matter what age) with various medical conditions is understandably cautious and they will probably not move from their official position.

Nevertheless, expert CML clinicians will take a different view and advise their patients on an individual basis accordingly. it is clear that CML patients who have good stable responses to TKI therapy and do not have any other health issues in addition to CML, medically speaking are not considered to be at an additional risk from COVID-19 than the 'normal' population. 

However, the NHSE categorisation of CML as 'high risk' may have a knock on effect on how GP's and primary care view those with CML.

Very understandable. I’m just nine months from diagnosis; it’s all still new and rather confusing at times. This site has been most informative. Thank you.