You are here

UK and Coronavirus

Been undetectable on my qPCR scans since 9 Sept 2019.  My wife and I have planned a trip to the UK - London and Scotland - starting March 22nd and ending April 11th.  I looking for some intel on how prepared the UK is.  The US, where I live, has really screwed up preparing for it.  How concerned should I be?  My last labs on Dec 16th - wbc = 3.1; abs neutrophis = 1.51.  Wbc was lower than it has been running, but all the blood counts - wbc, rbc, and hemaglobin - have run a little low since I started Imatinib in July, 2018.  

Any perspective?  Wisdom?

Thank you!

 

 

Hi, I think the UK is just about as ready for a possible epidemic as any other region... i.e not really. But that should not worry you as long as you're white cell count is stable and you have managed to deal well with infections/virus' over the winter months then maybe you could plan to take extra Vits etc before your trip. Boost your intake of Vitamins C and D3 and follow the general advice. 

The following article is a good overview of coronavirus and how worried we should/should not be: 

'Here we wanted to separate facts from fiction and hope to provide some gentle reassurance. Read on for a simple overview on coronavirus, an understanding of where you can access updates you can trust and some simple and practical ways to support your immune health.'

https://www.nutriadvanced.co.uk/news/supporting-you-with-a-better-unders...

I hope you enjoy your trip.

Sandy

Is anyone aware of any data which shows the effect of imatinib on the immune system. I have read some abstracts on research which shows that the effectiveness of imatinib depends on an effect on the immune system preventing other cancers and tumours. I have been taking it for 15 years and I seem to have been remarkably free of flu type infections over that period. Of course this may be more due to life style and antiflu vaccines than any side effect of imatinib. I can't believe that there is no data on this but I can't find it.

Hi everyone,

just a quick question (maybe a stupid one) are we falling in to the category of the “immunosuppressed” that the experts are saying are at risk of complications due to Covid 19 even if our blood counts are all good ?

Thanks in advance of your answers

I was advised during my consultation in haematology to avoid contact with groups of people, e.g. waiting rooms, meetings, conferences, parties. Doctors, in particular, may become "super carriers" and patients should avoid hospital waiting rooms. My consultations until further notice will be by telephone. I will attend to have my blood taken as usual but it is expected that the number of patients in the waiting rooms will be much reduced.

Keep in mind that Coronavirus is not spread through the air (except within one meter of someone who has it and is sneezing on you). It is community spread via surfaces. You touch the surface, touch your face (eyes, nose, mouth) and that's how one gets it. And kissing someone who has it.

So - for now, you alone can control the spread and avoid getting it by consciously not touching your head and washing your hands with soap and water. Masks are ineffective to prevent the disease, but very effective in preventing transmission from those who have it (which is ironic because if you don't know you have it, you are not wearing a mask).

As with the flu - elderly weakened people are most at risk. In that sense corona is no different than flu. Once exception - young people under 15 don't seem to get it.

One final thought - this will all be gone (Northern hemisphere) by May/June. It will fizzle away just like flu. Something about sun, vitamin D and T-cell activation. I'm a broken record on that one. Don't let the media panic you. This is not Ebola, Sars or Mers. It's a flu-type virus. Most people won't even know they have it (which is why it spreads so easily).

Hi all,

I tried to find a link to this information on the CML Advocates website, but was unsuccessful. I received this information in an email from them.

The novel Coronavirus and the COVID-19 Disease
Information for Chronic Myeloid Leukemia Patients
State of the Art as of 08 March 2020

Dr Michael Deininger (USA), Dr Fran├žois Guilhot (France),
Dr Jeroen Janssen (Netherlands), Dr Tim Hughes (Australia), Dr Jeffrey Lipton (Canada), Dr Franck Nicolini (France),
Dr Jerry Radich (USA), Dr Delphine Rea (France),
Dr Giuseppe Saglio (Italy), Dr Suzanne Saussele (Germany), Dr Rick Silver (USA), Dr Juan-Luis Steegmann (Spain).

Introduction
SARS-Cov 2 is a novel coronavirus that belongs to the large Coronaviruses (CoV) family. It emerged in December 2019 in Wuhan, China. This new virus is responsible for an illness called COVID-19 ranging from a simple cold to a more severe respiratory infection. The virus is spreading across the globe, representing a pandemic alert.
Transmission
Conventional routes of transmission of the new coronavirus consist of contact with respiratory droplets from infected persons. People may also possibly be infected when touching a surface or object that has the live virus on it then touching their mouth, eyes or nose although it may not be the main route of infection since in general, survivability of coronaviruses on surfaces is considered as poor. Finally, the new coronavirus can be detected in the gastrointestinal tract, saliva and urine, so these routes of potential transmission are currently under investigation.

Symptoms, diagnosis and treatment of COVID-19
Symptoms
Symptoms of COVID-19 may occur around 2 to 14 days after coronavirus exposure. Main symptoms of are non-specific (and common to other viral infections such as seasonal Flu) and include fever, cough, chest pain or shortness of breath.
COVID-19 is in about 80% of cases asymptomatic or mild, severe in about 15% of cases (like pneumonia requiring oxygen) and critical in around 5% of cases (like acute respiratory distress syndrome, kidney failure, multiple organ failure or even death). On March 5, 2020, WHO estimates the global mortality rate around 3.4%.  Recovery in mild forms of infection is around 2 weeks.
Diagnosis of COVID-19
Positive diagnosis of COVID-19 requires detection of the virus by nasopharyngeal swab in symptomatic patients. In most countries, tests are restricted to persons highly suspected of COVID-19 or who had been in close contact (directly or less than 2 meters from) with infected individuals.

Treatment of COVID-19
Treatment is essentially supportive, either at home or in hospital. There are currently no specific anti-viral medications to kill the new coronavirus. Severe forms of infection require transfer in hospital and eventually in an intensive care unit.
Risk factors for severe or fatal COVID-19
Older adults, people with some coexisting chronic illnesses (like chronic lung diseases as an example) and those contracting secondary infections seem to be at higher risk of severe COVID-19 but more precise risks factors are not clear yet. As a general rule, immunosuppressed individuals should be considered at high risk. Children are rarely affected.
Are CML patients are higher risk for severe or fatal COVID-19?
There are no available specific data on the new coronavirus infection or COVID-19 in CML patients treated with tyrosine kinase inhibitors (TKI).
At the moment in a normal situation, neither chronic phase CML per se nor tyrosine kinase inhibitors against CML appear to induce a state of clinically significant immune suppression. However, we really do not know if protection from COVID-19 requires a level of immune control that non optimally-controlled CML or TKI therapy may in part impair. Therefore, we recommend CML patients under TKI therapy to be extremely cautious and to strictly follow the restrictive measures suggested by health authorities of their respective countries, in order to avoid the risk of contamination and to prevent the spread of infection.
Don’t forget that you may be at higher risk of severe infection due to non CML-related causes (like older age, other diseases, immune suppressive treatment for another disease).
What to do in case symptoms compatible with COVID-19?
Everyone should follow its own country or region-specific procedures/recommendations for what to do in case of symptoms compatible with COVID-19 and for coronavirus testing, as these procedures may slightly vary, depending on local situations, health system organization and government decisions. Importantly, these recommendations may evolve overtime thus staying updated with the goings-on using only reliable sources of information is a key issue.
Most countries currently recommend isolation of COVID-19-affected patients either in the hospital or at home until they no longer represent a risk of infecting others. People who have been in close contact with COVID-19 patients and who are tested positive for the virus may be asked in many countries, a quarantine of around 2 weeks (at home or in hospital) to avoid viral dissemination in the general population.
What to do if you have CML and you contract coronavirus or COVID-19?

    If you have symptoms compatible with COVID-19 or have been in close contact with a coronavirus infected person, follow your country-specific procedure (usually a dedicated call center).
    Inform your hematologist/oncologist by phone or email or fax (don’t come to the hospital on your own as you may contaminate health care providers or other fragile patients).
    Don’t stop your treatment with TKIs unless your hematologist or oncologist asks you to do so, but ask your hematologist to contact the team taking care of you in case of confirmed COVID-19 as adjustment may be needed.

Prevention of coronavirus infection and COVID-19 for CML patients
Prevention is a key issue. Here are some commonly admitted rules:

    Avoid close contact (<1 or 2 meters) with people having symptoms of respiratory infection
    Avoid touching your face (eyes, nose, or mouth) with unwashed hands
    Wash hands often with soap and water for at least 20 seconds especially after going to the bathroom; after using public transportations; before eating; after blowing nose, coughing, or sneezing. An alcohol-based hand sanitizer with at least 60% alcohol may also be used.
    If cases have been detected in your area, limit social contacts
    In case of blowing nose, cough or sneezing, use a tissue and immediately trash the tissue
    Do not systematically wear facemask if you are not sick, unless your doctor asks you to do so or due to specific hospital/clinic/country policy.
    Avoid nonessential travel especially in areas at high risk of contamination. Please, check the Updated World Health Organization Travel Advice HERE.
    Avoid traveling if you suffer from a cold or do it if necessary, using a facemask.
    If you experience benign symptoms of respiratory infection and you have an appointment with your hematologist, call your hematologist first as there may be recommendations to postpone the visit in order to protect healthcare providers and other fragile hospitalized patients or outpatients.

If you feel well, don’t postpone your visit with your hematologist unless your doctor asks you to do so.

Updated information will be provided in case of significant changes or breaking news

Sources of information

    WHO website: https://www.who.int/health-topics/coronavirus
    CDC website: https://www.cdc.gov/coronavirus
    Eurosurveillance Editorial Team. Latest assessment on COVID-19 from the European Centre for Disease Prevention and Control (ECDC). Euro Surveill. 2020 Feb;25(8). doi: 10.2807/1560-7917.ES.2020.25.8.2002271.
    Ruan Q, Yang K, Wang W, Jiang L, Song J. Clinical predictors of mortality due to COVID-19 based on an analysis of data of 150 patients from Wuhan, China. Intensive Care Med. 2020 Mar 3. doi: 10.1007/s00134-020-05991-x.
    Guan WJ, Ni ZY, Hu Y, Liang WH, Ou CQ, He JX, Liu L, Shan H, Lei CL, Hui DSC, Du B, Li LJ, Zeng G, Yuen KY, Chen RC, Tang CL, Wang T, Chen PY, Xiang J, Li SY, Wang JL, Liang ZJ, Peng YX, Wei L, Liu Y, Hu YH, Peng P, Wang JM, Liu JY, Chen Z, Li G, Zheng ZJ, Qiu SQ, Luo J, Ye CJ, Zhu SY, Zhong NS; China Medical Treatment Expert Group for Covid-19. Clinical Characteristics of Coronavirus Disease 2019 in China. N Engl J Med. 2020 Feb 28. doi: 10.1056/NEJMoa2002032.
    Zhu N, Zhang D, Wang W, Li X, Yang B, Song J, Zhao X, Huang B, Shi W, Lu R, Niu P, Zhan F, Ma X, Wang D, Xu W, Wu G, Gao GF, Tan W; China Novel Coronavirus Investigating and Research Team. A Novel Coronavirus from Patients with Pneumonia in China, 2019. N Engl J Med. 2020 Feb 20;382(8):727-733.

Please, check the attached factsheets

What you need to know about Coronavirus Disease 2019 (COVID-19)

What to do if you are sick with coronavirus disease 2019 (COVID-19)

Acknowledgements
CML Advocates Network would like to express our gratitude to all medical experts who contributed to the production of this information

Let's do an informal survey:

How many have had the flu (those without flu shots) in the last two years?

Given that we all have CML - (at least until a cure is proven) - do we catch the flu at a rate more or less than the general population? And when you did get the flu was it any different than before you had CML (i.e. much worse than "last time" pre-CML) or about the same (cough, chills, fever, one week feeling bad followed by another week recovering)?

Coronavirus is similar to the flu. Flu is part of the coronavirus family. What is different is it is new to the population so there are no anti-bodies to check it - yet. But that will change. And I just read that a vaccine is now in testing. Won't be available this year, but will be next year when flu/corona seasons begins again.

1. I'll start - I have not had the flu in the last seven years - and I do not get flu shots. I haven't had a cold either.

 

 

I do get flu shots, and other than Imatinib related diarrhea, I have not been sick since starting Imatinib.

Diagnosed January 2019.On Imatinib since then.Had one or two very mild bouts of colds.Cold symptoms much milder and shorter time than before diagnosis.Have never had flu vaccine.

Scuba, you might find this paper interesting:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5726329/

Key Points:

TKIs impair B-cell immune responses in CML through off-target inhibition of kinases important for B-cell signaling.

Our results call for close monitoring of patients on TKI to assess the long-term impact of impaired B-cell function.

It appears that TKIs can cause B-Cell impairment (if I'm reading this right), but to be honest I don't know anything about a B-Cell function so not sure of the relevance of this.

Hi David,

Some background on the differences and similarities between B-cells and T-cells and role of vitamin D:

http://iv.iiarjournals.org/content/28/1/133.full

http://iv.iiarjournals.org/content/28/1/133.full

T-cells are the main vehicle for initial attack on an invading pathogen, activating quickly when viral proteins are detected. B-cells also respond, but are key in having a "memory" after pathogen invasion is over and are largely responsible for future immunity. Both T-cells and B-cells react to invading pathogens.

Vitamin D activates both T-cells and B-cells. And vitamin D deficiency will have a much more profound effect on immune function than immune suppression.

TKI "suppression" of our immune system (not just B-cells, but other white cells as well) is minor in comparison to lack of activation caused by vitamin D deficiency. It is not insignificant, however, and another reason to lower TKI dose whenever it is prudent to do so. But the key idea is what process is controlling. Does immune activation overwhelm immune suppression in the presence of a pathogen. It is observed that CML patients following successful TKI treatment tend to have better pathogen resistance than prior to diagnosis. This is believed to be caused by the destruction of poor performing leukemic cells which are replaced by new normal functioning immune cells. Apparently CML reduction outweighs any subsequent TKI induced suppression when it comes to overall immune response. Could be a good thing if it also reduces inflammation caused by an overactive immune system (autoimmune). In both cases vitamin D is the mediator enabling both cell types to activate (including Treg cells).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6402079/

Hi, 

Diagnosed August 2018. I take 400mg Imatinib I a day. I've had a couple of mild colds, now and again my eyes and cheek slightly swell,  I've also had the odd bout of lower leg night cramp. I've had yearly flu jabs for years and did have one this year.  I was invited by my GP to have the pneumonia vaccine but for some unknown reason I didn't take that offer up.

Thanks to everyone who contributed to this thread.  Because of the situation, we have now decided to cancel our plans to travel to the UK... for now.

I think that’s a smart move. Forgetting infection problems, London and the rest of the country isn’t exactly in lockdown but you won’t get the experience you would normally get. It would be a weird trip. Come back here and enjoy it when times are more fun! I’ll show you around!

David.

Hi David,

Sign us up too!

(for your giving us all a tour). It's been way too long since my wife and I spent time in a real pub. Would love to visit Da Mario's Italian in Kensington/Gloucester. Simply the best Italian food in London! ...  well maybe second best.

Any time! There’s a spare room in my house waiting to be filled.

D.