New diagnosis of CML brings worries about covid vaccine response

Hi  and welcome to this corner of the community, I am Mike Thehighlander and I help out around our blood cancer groups.

So sorry to hear about your husbands CML diagnosis and like many blood cancer (I have a rare skin Non Hodgkin’s Lymphoma) these can gi undetected for many years and often found by accident.

Apart from regular skin treatments as though I had bad Psoriasis I was on Active Monitoring for 14 years then mid 2013 my condition became aggressive so we had to fight fire with fire (hit my name fur my story)

’Freedom Day’

There are about 3.8 million people who were classed as clinically extremely vulnerable (CEV) in the UK at the start of the pandemic

Creator of Oxford vaccine Sarah Gilbert wrote yesterday that “And there are unfortunately some people with particular health conditions that mean they just don’t respond to a vaccine, and they are going to have to make sure that they are protected, probably by shielding again, if there is a lot of spread of the virus.”

My clinical team are telling me that I should have ‘some’ protection from my two vaccines but there is insufficient evidence and tests about how effective it has been in our ‘at risk’ group.

But I will still see ‘Freedom Day’ in a positive way as it will be the first time in 7 months that I can legally have my two daughters and 4 granddaughters under one roof at the same time. I will add now that I am a total glass half full person.

If you read my story you will see I have had some ‘interesting’ treatments with my second Allo (donor) Stem Cell Transplant being Oct 2015.

So since then I lived with the risk of infection where a small cold taken in by one of our granddaughters could result in me developing a chest infection and few times this had resulted in a week in hospital with Pneumonia and Sepsis….. but I get through these and I am living well and enjoy life.

I was basically shielding for over 4 years before ‘shielding’ was a ‘thing’ so when the country went into lockdown back in March last year we just carried on doing what we had been doing before, just incorporating the restrictions snd guidance into our lives.

A week before the first lockdown started both my GP and my Specialist Cancer Nurse called me and both basically said the same “Mike you and your family are still behaving yourselves? - don’t panic, you will just have to continue with what you have been doing for all these years but be more careful until a way is found to get through this new challenge”

We don’t get upset when we see ‘Freedom Day’….. we have always been free but we make our own freedom choices and are doing great. The positive is the more ‘well’ people who get double jabs the more protection ‘we’ get…. just like the many other times through history….. 

My Stem Cell Transplants killed off my childhood vaccinations so had to have them again but could not have the live ones so can’t have the MMR…..

In the late 60s the Measles vaccine was introduced in the UK. The vaccination coverage needed to reach 95% to achieve widespread protection...... we gained ‘measles-free’ status in 2016!!!!

But the UK lost its ‘measles-free’ status three years after the virus was basically ‘eliminated’. Cases of the potentially deadly infection have been growing year on year with too few people now being vaccinated.

Why does this matter? Measles was one of the world's most contagious diseases. It is a viral illness spread by coughing and sneezing..... sound familiar? Although most people who catch it will recover, it can lead to life-threatening complications in people post Stem Cell Transplant...... now we have COVID and COVID is not going away soon so we continue to be carful.

How do my wife, family, friends and myself ‘live’ in freedom?

The first thing is we don’t let what is going on around us define us…. be it colds, flu, Covid, measles…..!we define how we live.

We all automatically risk assess as we go. Our family and friends all know the ground rules ‘any bugs no visits’ and we now can use Covid testing kits for those who work in the community. 

We take advantage of the fresh air and way before eating outside because a ‘thing’ we were doing it, even in the winter in the Highlands

We have not been in any busy supermarkets, shops, pubs, cinemas, restaurants….. for over 6 years now. But we have been to these places during quiet times. We have a few favourite restaurants that we know them very well and they know us and our challenges so always look after us very well.

Yes we have been on holiday, in a plane, hotels abroad…. and that was done with a mask on when people were looking at you as though you were stupid….. during my main treatments and recovery from late 2013 we were told to ware masks all the time moving through hospitals - again everyone thought we were stupid….. but now life is just that more ‘normal’ as we can carry on doing what we want and it’s not going to be looked at as not normal.

Oh I just looked back and this is a long post….,

Happy to talk more if this can help you get your head round these challenging times ((hugs))

Thanks Mike, that's all very encouraging, especially the length of time you've been able to work on active monitoring. We're older than you, I'd guess - but we both feel we've had very good lives, and that they are coming to a natural end anyway. That's why it's so important not to let this define you, as you say. In a way, like yours, our lives haven't changed all that much, though I'm debating whether I can risk going to my beloved choir practices in case I pick up and bring something home. They used to be one of my carer's lifelines. All very carefully risk asssessed, with 2m spacing, mitigation behaviours, no tea breaks or the chit chat and close contact - but yes to the joy of making harmony together instead of funny Zoom sessions.

Hi again, it’s good to talk with you.

After my years of treatment life is far to short to waste a life that has been hard fought for.

I am now turning 66 and been on my journey 22 years now so we have developed ways of ‘living’ to the full.

Singing is important in many ways for our wellbeing. Up in Scotland we just over the past few months been allowed to sing in Church again although waring a mask so worth considering your choir….. I am happy with 50 people singing in a large hall

Nice to know you're a singer. We're still not allowed to sing indoors - unless you're rehearsing for a performance which is being paid for - though how covid tells the difference I'm not too sure! But we can go to Wembley Stadium tonight and shout our heads off!! Or some can. It's all so illogical. Hoping this will change next week. Our lot are not planning to sing with masks, though I could always opt to wear one myself. Our choir is smaller - about 30 and not all appearing yet, so probably safer.

Stil worritting about the singing - my chor is just about to resume activities indoors, and now with news that vaccine protection is waning - we both had our second jabs end of March - and incidence of the virus increasing the sense that Alan should shield and I should therefore also be supercautious too about exposing myself to infection is getting stronger. He has an appointment with his Haematology consultant in September, where we hope to discuss this. I do envy the confidence with which you have come to be able to assess your risks. As a newbie, it seems terribly difficult, especially as singing has been a real life-line to me as carer, long before shielding was a thing, and before we got this very recent diagnosis. I'm wondering about singing wtih a mask on. Haven't tried it yet, but anything is worth it - I'll still be able to hear how I harmonise with the other voices,

Hi again  interestingly, in Scotland the requirement for masks is still mandatory for certain circumstances and that includes in Church…… I can sing perfectly well with a mask on

Yes I have had years of experience of developing a ‘stay safe’ approach to getting on with life.

My two Stem Cell Transplants killed off all my childhood vaccinations so a year after my second transplant I had to have them again…..although I cant have any live vaccines as this could risk affecting my grafted cells so I can’t have the MMR…… 

I am at as much danger from Mumps, Measles and Rubella than I am from Covid especially as the UK lost its Measles free status a few years back due to the anti-vaccine lobby resulting in a massive increase in Measles in the population.

Our approach is that I have little immunity to Covid so we do our best to ‘live’ not out of fear but out of logic and continue to ‘live’ a full and varied life…… looking for the wider population to get vaccinated and us get a booster jab ((hugs))

Hi again  interestingly, in Scotland the requirement for masks is still mandatory for certain circumstances and that includes in Church…… I can sing perfectly well with a mask on 

Yes I have had years of experience of developing a ‘stay safe’ approach to getting on with life.

My two Stem Cell Transplants killed off all my childhood vaccinations so a year after my second transplant I had to have them again…..although I cant have any live vaccines as this could risk affecting my new grafted stem cells so I can’t have the MMR…… 

I am at as much danger from Mumps, Measles and Rubella than I am from Covid especially as the UK lost its Measles free status a few years back due to the anti-vaccine lobby resulting in a massive increase in Measles in the population.

Our approach remains to look at me having little immunity to Covid so we do our best to ‘live’ not out of fear but out of logic and continue to ‘live’ a full and varied life…… looking for the wider population to get vaccinated and us get a booster jab ((hugs))

Thank you so much for such a kind and prompt reply - I think we probably have far less to contend with than you do, and I'll take courage from what you say! Like the hugs - and yes, we're wondering about a booster shot for Alan, too, and maybe for me as his carer.