Covid Antibodies and MPNs

[Ovingite]

Hello fellow MPNers. After listening to the interview with Blood Cancer UK on BBC R4, concerning the effectiveness of vaccines in providing protection to blood cancer sufferers, I ended up with more questions than answers. So I e-mailed BCUK asking for information specifically for MPNs rather than the broad spectrum of blood cancers. Within a matter of hours I received a very comprehensive response from them, which I think is well worth sharing. To make sense of it, I have copied below my original request and their response in full (so this is going to be a long post!). There is still much that I don't understand (I suspect I am in good company there!), but I found this very helpful.

BCUK asked me to include this message to you all:

If you could kindly include links to our support services (bloodcancer.org.uk/support-... we would be very grateful. This way we can support those who might have additional questions or concerns about any of the issues raised.

I hope you find it useful.

John

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I have read a lot recently about the effectiveness of Covid vaccines for people with blood cancer, and I also heard your Radio 4 interview.

I am well aware that the term 'blood cancer' covers a wide spectrum of diseases, from chronic to acute and debilitating to inconvenient. I am a 71 year old male with ET jak2+, taking hydroxycarbamide. I have always considered ET to be at the more benign end of the blood cancer scale, and as such I am somewhat confused regarding the extent to which this current concern (lack of protection from vaccinations) is relevant to MPN sufferers in general and ET sufferers in particular.

I would greatly appreciate clarification please.

John

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Good morning John,

Thank you for reaching out to Blood Cancer UK, you’re right to want to know more considering the concerns about the effectiveness of the vaccine for people with Essential Thrombocythemia, such as yourself.

We still don't know the effectiveness of the vaccine for people with blood cancer, and so we would strongly encourage people who are clinically extremely vulnerable to continue to take precautions to avoid the virus.

As more people have the vaccine, we will learn more about how effective it is in people with blood cancer, and will keep updating our information. As you'll know, the best people to offer you advice around your individual circumstances and medical history, will be members of your healthcare team, so don't be afraid to get in touch with them to talk things through and get their advice if you have any concerns. You might find it helpful to also take a look at our webpage which aims to help people think about their own individual risk to Covid-19 Understanding your Level of Risk.

You are correct that the term “Blood Cancer” does cover a wide range of cancers, each of which can have very different symptoms, treatments, and outcomes. As part of our Vaccine Research Collaborative we are funding a wide range of studies, some of which include people with ET. Early data suggests that in people with slow-growing, chronic blood cancers such as CLL, CML, follicular lymphoma and MPNs, there are mixed results about whether being in remission, being on treatment, or having different types of treatment, makes a difference to covid vaccine efficacy.

We are working with our research network to develop practical steps for monitoring immune response after vaccination for blood cancer patients. You may want to take a look at this page of our website as it talks about the different research studies, including research into people with MPN’s such as ET: bloodcancer.org.uk/support-...

There are many trials and studies looking at the covid vaccine in cancer patients, in immunocompromised people, and some in people with blood cancer specifically – some of which you can sign up to. You can find further details about these studies on our website here: bloodcancer.org.uk/support-.... We are continuing to try to find out more about the various research projects underway, so we can tell you how people with blood cancer will be monitored. We will update our information on this as soon as we know more.

I would also like to take some time to mention antibody tests. As you may know, there are concerns in the research community about antibody tests not providing the full picture about immunity, as we still don't know what part of the immune system is necessary for immunity to coronavirus. Questions remain about whether it is 100% antibody or 100% T-cell, or a mixture of both. At this time, there isn't certainty about what antibody test results mean for a person's immune status.

You may find our blog on antibody testing on our webpage helpful in understand this further: Covid vaccine: should people with blood cancer get an antibody test? | Blood Cancer UK.

In this clip from our 'Ask the Experts Q&A' on the Covid-19 vaccine, the panel discusses the important question of how we will know how the Covid-19 vaccines work in people with blood cancer. Dr Graham Collins provides information about what to look for and what to be mindful of when thinking about antibody tests and their results - youtube.com/watch?v=5coAg7T...(Not working as expected?)

An antibody test is currently not given to patients by default, and availability varies from place to place, as is discussed in this clip: youtube.com/watch?v=S4BkFPp...(Not working as expected?) . Additionally, there are currently two different types of antibody tests, and the one most routinely available does not look at the spike protein - which is the antibody that you would expect to appear after you have a vaccine.

It’s really important to highlight that everyone is individual, and there are so many factors which could determine a person’s response to a vaccine. We would really encourage people to speak to their healthcare teams if they have any questions or concerns around their immune response to the vaccine.

It’s also really important to highlight that now there is emerging evidence that vaccines reduce transmission, the success of the vaccine roll out is good news, as it will be a really important factor in protecting people who have little or no response to the Covid vaccine themselves.

This may be quite a lot of information to process so if there’s anything you want to talk through, anything we can do to support you, we’re only an email or a phone call away on 0808 2080 888 or [e-mail].

Enjoy the rest of your day,

Sophie

Sophie Stephenson, MSc

Support Services Officer

Clinical Trials Support Services Coordinator

[Ovingite]

Hmmm. I've never replied to my own post before 😉, but it seems that the HU system has tried to embed two videos rather than the links to them - and it doesn't work. However, you should be able to find them easily enough if you follow the BCUK support link or just go to their website.Technology eh?

John

[Cja1956]

Thanks for posting this. Lately, it has been a concern of mine regarding the efficacy of the vaccine for people with blood cancers. I’m in the US, in Florida, and it has opened up completely. No one is required to wear a mask, except the servers. Yesterday we went out for breakfast and the place was packed. I was anxious the whole time, even though I’ve been fully vaccinated since early March. I am going to try to get an antibody test soon. Hope you are well.

Cindy

[Ovingite in reply to Cja1956]

I fear we will have all restrictions cancelled on 19th July too. Not sure that I'm comfortable with that, but sooner or later life has to go on. Our PM seems to think we have to rely on people's common sense, but common sense isn't always very commonStay safe

John

[Mostew]

Well said !!!

[JediReject]

Great question John and Many Thanks for sharing Sophies comprehensive response which makes some valid points particularly around antibody tests themselves. On one of your points I think there's much the 'experts' don't yet understand !!

In Sophies response, as for suggesting we refer to our respective health care teams well I won't be holding my breath there because all the questions I've asked of them thus far have drawn a blank. But equally there are some positives to draw on in that it's on agendas and things are moving forward in what is a complex area.

The research studies sound encouraging and it would be brilliant if we could have a reliable antibody test which we could trust within the next few months.

I think after the 19th it may well be a bit chaotic with suggestions on the news today that mask wearing will not be mandatory in many places. It will for me and I suspect many of us for some time to come until we start getting the answers we desparately need.

Regards - Chris

[Lorrmac in reply to JediReject]

Chris, how absolutely right you are regarding advice from our own health care team. My hemo team doesn’t even recognise ET as cancer. Last year, they asked me why I had been put on the shielding list and by whom. Confidence in them, none at all I’m afraid.

[JediReject in reply to Lorrmac]

Dont get me wrong Lorrmac I didn't mean it to be derogatory in any way because my Haematologist and team are brilliant at what they do within their field of expertise and I couldn't ask for better. I just think until there is alot more research / data which takes time to gather and make sense of that their working knowledge of how Covid / vaccine affects blood cancer or stem cell recipients is work in progress. I dont think its fair at this point for us or third parties to expect them to have the answers and the few questions I've asked bear that out.

If you feel that way about your provider you ought to seek another even if it means travelling further afield, I did and it saved my life in the end.

Chris

[JeniMac in reply to JediReject]

Can i ask how you changed haemotoligist I'm having lots of problems with mine

[JediReject in reply to JeniMac]

Hi JeniMac, Just a little background if you'll indulge me please. . .,, I was seeing my Haematologist for some 20 months for Intermediate Stage 2 Myelofibrosis and during that time had to push him into submitting an application to the Cancer Drug Fund for Ruxolitinib which for some reason he was reluctant to do.

Over a year later when it wasn't working too well for me he more or less shrugged his shoulders when i asked about the next step. There was a visiting Haematologist from a city close by who happened to be in the room and he chipped in with a couple of things to try such as Rux with HU or another drug or stop Rux for a time and restart it.

I realised there and then he was out of his depth with my condition and I seriously needed to take control of my destiny.

So next appt i simply told him that I was unhappy with the way things weren't progressing and that I wasn't confident he was the best person to advise me going forward to which he agreed. I thanked him for bringing me thus far and asked him to kindly arrange a referral asap to a recognised Transplant specialist, the nearest being 50 miles away in Manchester UK. He expedited my request which was probably the most positive thing he did for me.

Everybody is entitled to ask for a second opinion but it isn't a legal right, however I think most GPs or Consultants will likely acquiesce. You don't have to give reasons but if pushed I would do it in a calm manner . It may be easier if they aren't an MPN expert because ideally you should be seeing one. But he or she may be some distance away so you need to weigh up if that's what you really want.

It could be best to try and engage with your current bod, explain whats going well , what could go better and try and move forward having cleared the air. Not always easy but it needn't be confrontational. The other option is put it in writing perhaps in a Thank You or lovely blank card which will mean you will need to be concise unlike this reply 😃.

Sorry its a long reply hope it's helpful in some way .

Chris

[JeniMac in reply to Lorrmac]

I don't have a good haemotoligy team either not seen anyone for 18 months only telephone chats and was feeling poorly rang to see if I could have bloods checked a little earlier waited 5 weeks to get back and by then it was my a blood appointment anyway I'm really thinking of trying to change hospitalsHope your OK

[Ovingite in reply to Lorrmac]

I recon my hemo team must have trained at the same place as yours. Still refuse to accept MPNs as ' proper' cancers, but the medication they put me on seems to be working, so I'll just make my own way through this pandemic.

[Ovingite in reply to JediReject]

Hi Chris,Some of the positives I take from this are that:

- it has raised awareness of blood cancers

- it's opened up massive opportunities for future research / remedies over previously unheard of timeframes

- it has encouraged more of us to take greater ownership of our condition and understand it better

As they say, every cloud has a silver lining (mind you, it was a b****** big dark cloud!)

Cheers

John

[JediReject in reply to Ovingite]

John I wholeheartedly agree with your points and yes it was a very big dark cloud and there may be grey skies for a time yet . Take care!

[Hidden in reply to Ovingite]

Thanks for your points. I certainly think that we need to take great ownership of our own wellbeing.

My specialist is wonderful (public hospital). I went to a private one for a 2nd opinion about something and me oh my! Never ever will I darken his doorstep again.

My specialist encourages me to tell her all the alternative options I try and their results. So far the best for me is fasting (which brings my numbers right back into line, getting rid of all the excess damaged cells and creates new stem cells - but hard to do with PTSD in a pandemic) and the eating of fermented foods. We have options

[Mostew]

Sounds like if concerned , don’t go to crowded places , wear a mask and be careful . Naturally it takes time to gather data .

A lot of words to say not a lot. But so nice he took the trouble to write to you and be honest

[Turfbeg]

Many thanks for this post Ovingite - the two antibody tests particularly interesting.

[Jody00]

Very well said Xx

[Nellin]

Hello Ovingite,Thanks for sharing all of this information and links. I am going to give it all a rest now and just go for a long walk by the river tomorrow where I can forget about it all for a while.

Nellin

[JediReject in reply to Nellin]

Makes good sense ! I do same Nellin cept tis down beach with my old Staffy Skye, , it's just about kept me sane this past 15 months or so. Enjoy !

[ciye]

Thank you for the post. Like many others I will keep my mask indoors and a bottle of sanitizer in my bag. I would like to think it would still be everywhere but as it's an added cost probably not.

[Ebot]

Thanks for sharing. Really helpful. But definitely more questions than answers!

July 19th is feeling more like FreeDoom Day than Freedom Day. This ‘up to each person’s common sense’ about mask wearing is complete b******s. (Sorry, but ‘nonsense’ doesn’t touch it.)

Unless you have a super grade, hermetically sealed mask, mask wearing is designed to protect other people from any potential infection you might be carrying. It’s not designed to protect the wearer. I don’t believe healthy people will don a sweaty mask of their own volition if they are not required to and perceive they are immune.

Herd immunity may in time help but in the meantime I fear a summer of social pariahs for us MPNers. I might just slap the next acquaintance who wants to kiss and hug me on the basis ‘we’re both vaccinated’. And I’m sick of having to explain why I appear to be behaving cautiously. I worry we shall just be left in ‘the weird corner’.

The Govt really needs to get its act together PDQ and recognise that for some vulnerable sectors life is not going to return to ‘normal’ in a fortnight and to enshrine that vulnerable status in order to protect those who work and continue to need services like priority online shopping. Rant over.

[JV4E in reply to Ebot]

Well said Ebot ! At the moment we are protected to a certain degree by other people wearing masks and socially distancing. If all that goes out the window what are we supposed to do - go out to the shops etc and risk being infected, or shield forever ? Like you say very few people who perceive themselves immune will choose to wear a mask. It's like being between a rock and a hard place. If anything we will be more restricted after 19 July than we are now because of the really high number of infections and the lifting of restrictions. I realise that this is good news for the healthy and the immune and we can't live in lockdown forever, but recognition from this Government that for some groups 19 July is certainly not Freedom Day would be appreciated !

[DottyDaisy]

Thank you so much John. So much to think about here and so much more to look into.So far, that doesn't seem to give me any reason to get vaccinated, as I am antibody positive, having had Covid last year. I didn't know about the difference in the testing either, so will particularly look into that.

If I am forced into it as a prerequisite for surgery or to be able to visit family abroad, then your post will help me to decide which vaccine I should try and get.

Again, I really appreciate the work you are doing on our behalf.

Warm regards Daisy

[Hidden in reply to DottyDaisy]

You have antibodies - and what is more, naturally acquired! Well done you - don't mess any more with your body. Heaven help us - I am sure much is going to be learned with such a large study (the world) as the trials continue. It is a pity that science is going to be forced to take a background seat with the only option being given any air time at all being the new unknown vaccine. The very fact that their are build ups in the bone marrow (and ovaries, and ...) without there being any research as to what that means. AND Pfizier did not release that info without being forced to - no, I am sorry, this one size fits all and there can be no other thoughts in the area. does not work with me.

[mhos61]

Thanks John.

As you say your question still leaves many answers, which is understandable in my opinion. As more data comes in hopefully things will slowly change.

The way I see it is there are so many variables to consider in MPNs, let alone the full range of blood cancers. Even in the most benign form of MPN (ET), some will experience an indolent form, whilst others will have more active disease. Then there is age, treatments/dosage and comorbities to consider. All of these will impact the immune system and therefor the efficacy of the antibody response to the vaccine.

I did the ‘Testing for All’ antibody test awhile back. I was delighted with the strong response I had to the Covid spike protein - 2239 out of a possible 2500. But I certainly remain cautious despite this. I recently noted somewhere on the BCUK website, it’s not just about the quantity of antibodies produced but also about their quality. Also, we’re not sure how much the T cell memory response is involved. So, where does that leave things?

I have continued to be vigilant with face masks, sanitiser, social distancing etc. As the numbers fell I have gone back to shopping in the supermarket, meeting friends for lunch outdoors. Also, I hadn’t seen my daughter since Boxing Day 2019. She came home for the weekend a few weeks ago, so that was lovely.

Having said all this, the numbers are rising exponentially in my region - but I’m optimistic with low hospital admissions this time around. I will remain vigilant, throw ‘looks’ to anyone who invades my space, but get on with living with this virus the best way I can.

[Ovingite in reply to mhos61]

Hi Mary,Yes, this is a complex area. The more I learn about this the more I realise how much I don't know. But we are where we are and I've come to the conclusion that each of us has to navigate our own path through the residual pandemic. Some of us will have supportive medical teams to help guide them, others (like me) have to find their own way through, which I'm ok with. So I aim to enjoy the relaxation in rules as much as I think is prudent and make my own risk assessment - which in practice most of us have been doing for the last year or so.

Stay safe

John

[azaelea]

Thank you so much John for sharing this very helpful information about a situation we’re all worried about. I do look on BCUK’s website and find their reply to you very helpful. I have ET JAK2 + also and am in my 80’s so still being extremely cautious. I don’t look forward to what will happen after 19th July either! Regards, Fran

[Carolyn77]

Thank you so much for your post and the information. It was helpful . I don't look at the site often and am glad I did yesterday so informative. Thank you John.