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 info@cml-foundation.org 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.