There was an interview on BBC Radio 4 this morning, just after 6.50 am highlighting the efficacy of vaccines for people with blood cancers. A spokes person from Blood Cancer UK is calling for letters to be sent to everyone with a blood cancer to warn them in regards to increased risk even with two vaccinations. This would enable us to make more informed decisions about entering into social occasions. There was mention of increased hospital admissions of people with blood cancers ( although this is probably still low ) and booster vaccinations may be able to increase efficacy. Please listen to the interview if you get the chance, I would love to know how other people interpret the information.
I am rethinking my strategies as I go out and about again.
Be kind to yourselves
Nellin
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Nellin
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There is also an article in sky news about thisIt’s urging the government to inform all blood cancer patients to be vigilant as the vaccine response for us isn’t good and that we have a high risk of illness
Apparently the number of people in intensive care with covid and blood cancer was quite high . They say that not all blood cancer patients are aware of this and are assuming the vaccine will protect them. Let’s hope that the research that’s going on will into this will be fruitful
Thanks sweetpea19, there seems to be a gathering momentum, along with Cancer Uk, Cancer52 and Jillie ; it should hopefully encourage understanding and keep people safe.
Yes I heard it, it was interesting and I thought it was very well explained. I think it's highlighted the need for everybody with a blood cancer to have an antibody test and not one purchased off the internet. It also stated what we all know that we are lost between medical bodies as to who should be responsible for us. We had the debacle of the shielding letters, and now patients need to be informed of the efficacy of the vaccine. Should it be GPs, our haematologist, Blood cancer UK, or the government, and will it be uniform throughout the UK .
Hi JP1952, yes it does seem a conundrum as to who should be responsible for sending any form of letter to people with blood cancer in order to protect them, let alone finding a solution to vaccine efficacy to help.Stay safe
Hi, not till 14th but I have another telephone consultation with my Haematologist, I am certainly going to ask him about all of this. Thanks all for bringing this to all of our attentions.
I’ve just listened to the interview. Being pessimistic, I’m wondering how we MPN people would get a letter when most GP’s and some Heamatologists still don’t recognise a MPN as being a blood cancer. Also if two vaccines have provided no antibodies how is a booster expected to do so?Guess we still have to look after ourselves!
Hello Judy, yes, I do think we need to take care of ourselves. I am hoping that raising such issues in the media and government will also raise awareness in the community and medical profession.Take care
That's my concern Judy, listening to a bod yday it's likely the booster is the same but maybe tweaked for Delta variant. I wonder like you if we don't get protection from a double vaccine why would a booster be any different? If so how long would it last. We really need a measure done at clinic when our bloods are taken every 3 months for me. Chris
Just to throw a little (perhaps over-optimistic) positivity into the mixer:
It is being suggested that the booster should be given at the same time as our annual flu jab. The flu jab for over 65s has an immune boosting adjuvant, so we just might expect that to enhance the covid jab as well. I don't know if under 65s can elect to have the adjuvanted flu jab though.
Hi Judy.. totally agree. I didnt even get a shielding letter and couldnt get one even when all info provided so mot holding out much hope for this either.... .
Gemma did a great job on this interview, highlighting the fact that although there is relentless media messaging about how effective the vaccine is , it might not be very effective for those with Blood Cancers. It's concerning that there are now more people in hospital with Covid who have Blood Cancer than in previous waves and very sad that some of those have died. Also, 80% of those who responded to the Blood Cancer survey had NOT been told that the vaccine may not work very well for them - one has to ask why not, does it not fit with the picture the Government wants to paint on the success of the Vaccine Programme ? People could potentially be modifying their behaviour assuming that they are protected. Are we, the immune compromised being deemed expendable by this Government ?
Gemma was asking that everyone with Blood Cancer be sent a letter explaining the potential issues with the efficacy of the vaccine for them, so they can make informed choices about what they do and do not want to do as Society reopens. Let's see if the BBC (TV and Website) and other Media pick up this story and highlight the issues, or if once again we are side-lined.
Many thanks for this information - I wonder if the antibody test could be included in our regular routine blood tests? I am being FBC tested every 8 weeks at the moment so would have thought that a covid antibody test might be fairly easily and cheaply included? Even just once would give each of us more formation about our risk than we have now.
The blood tests are different, its done via a finger prick, I asked my Haematologist to do but he said that they could not, but luckily for me I am part of the ONS Survey, but yes it would be great if it could be done at the same time, as my poor old fingers get bruised and sore, and it feels like milking a cow as you have to pull down on the finger to make the blood flow and drip into the little bottle 😩
I had an antibody test done at gp it’s was part of a trial to see if I’d had Covid without symptoms it was before the vaccine roll out. I didn’t have antibodies. I have ET jak 2 and when I get my next telephone call from haematologist in August I will ask for another test now I’ve Had two jabs. If no antibodies I don’t see the reason for a booster jab at same time as Flu jab. Will be interesting to know. I did ask Nurse at surgery but she said she couldn’t do another as trial was done with. It was a full blood test not a finger prick. Maybe this has changed now.
Good idea, I am having my bloods taken on Wednesday for the consultation the following week, I have a very good secretariat for my Haematologist and will call her on Monday and ask if this can be included in my bloods on Wednesday. Will let you know on this site.
Milk kefir, kombucha, and fermented veges really are seeming like a good start for me. And then what about other alternate (unpoliticized - but where does one find that?) options.
It is appalling that people are not being given full information so that they can give full and informed consent to these 'emergency approved' vaccines.
One can understand that they have not been fully tested in this situation - but most people seem to disregard that and just jump right in. Some of us just cannot afford to take that risk.I will see if I can get a replay so that I can hear it over here.
My understanding is that is MPN are different to blood cancers, maybe check this with your Haem. It is also my understanding from listening to docs like Ruben Mesa on video that MPN patients do better with Covid than other blood cancer patients. Hopefully this can be confirmed by MPN voice or your Haem. Re antibody response I had the Roche spike antibody test from Testing for all and 6 weeks after second Astrazenica shot my antibodies were 170 and if I recall correctly the positive response is anything over 2, I have PV and on 17.5mg BID Ruxolitinib which is meant to have immune suppressant effect.I am still being very careful with Covid as I don’t how how meaningful having high antibodies is in terms of protection. I asked a expert Haem before having the test and he said even if the test showed negative on antibodies I might have a good T cell response which is only poss to get tested at research labs. He said although it wouldn’t do any harm to have the antibodies test the results either way are not that meaningful. That was his view about 2-3 months ago so it may be different now but I doubt it.
I think the important bit is not to panic about what is being said about “blood cancers” until it is clarified that it also applies to MPN, personally I don’t think is necessarily does but if in doubt check with someone who knows. In the meantime stay safe.
Have just listened to BBC 4 program very interesting even though at the end he did try and cut her off in mid flow..
As I do the ONS/Government/Oxford University study in partnership with IQVIA, along with my husband all our tests each month which are the throat and nose swabs, and the blood sample test have come back with Negative for Coronavirus and Positive for Antibodies, been the lateral flow since July last year and the blood test since May of this year, but both letters state that although your test shows this, it does not mean you have not had Covid, which both myself and husband feel sure we had it back in January 2020 as we were both really unwell for well over a month, my husband was even on antibiotics, which they said was a chest infection and his breathing when in bed was so bad he had to sit up all night, and my Platelets were over the place and my Haematologist said that I had an infection but what they did not know, took quite a few months to get them back to some kind of normal and an increase in my Hydroxycarbamide which has helped, but thats when Covid was just getting started so we were none the wiser.
These letters also state that although we show Negative and Positive We cannot assume that we cannot get Coronavirus again even though we have had the two vaccines, me AZ and my Husband Pfizer, so yes I think that this is now really worrying, as he is the one who is still going out and about doing the shopping, I am so reluctant but when I do I wear my mask and stay outside, so really this is false hope and we seem to be the forgotten few.
I must be one of the lucky ones as I received a letter from Guy's two weeks ago also my GP and local council warning me to take care and the different help that is available. I was rather concerned when I received them and enquired at my surgery. Preparation for September when it is expected there will be a possible spike of Delta together with winter flu was the answer
Hello Heather, thanks for your contribution, interesting that you have received written advice, perhaps others will as well. Did they specifically mention efficacy of vaccinations ?Let’s all try to be careful, along with some life balance after shielding for so long.Take care
I have an opinion on this and it might not be popular but here goes.
Do we need a letter sending to us to tell us to be careful? We have a serious illness that most of us know can affect our immune systems, especially with the drugs we take, so I think its common sense that tells us any vaccine, this or the flu vaccine, may not work as well for us as it does other people.
I understand the shielding letter was different, as for those of us who work it was evidence of the requirement to shield, and of course it helped push us up the queue for the vaccine itself.
For me its about personal responsibility, the government and nhs can only do so much in my opinion to protect us, certainly as most of the country becomes vaccinated and protected the fact that their are pockets of people who protection is lower , in my opinion, cant stop us continuing on the road path to opening up, especially while deaths and hospitilisations remain low, which is what its about, not the numbers of positive tests each day.
Add in that the fact that a lot of the population are now vaccinated, and this increases daily, this by default protects those more vulnerable as its been proven it helps prevent transmission.
The way i see it is ive spent most of the last year and a half doing little, large quantities not seeing my family, or enjoying social occasions, pubs, restaurants etc and while the evidence shows very few people are becoming seriously ill, then while i know my own protection may not be as good, i want to enjoy life and do those things i enjoy doing.
Of course i want to be sensible, if i went to the pub and it was shoulder to shoulder packed inside, at this moment in time i wouldn't enter. When I do have to return to the office, if those 'heroes' who will come to work with bugs like they do continue to do so, im going to kick up a stink and either they go home or i do. Likewise i expect my family and friends, if they are unwell, not to carry on regardless and make sure they keep away from me, like i will them if im unwell.
For those who have to work but fell they work in unsafe environments i do sympathise, but i dont know the answer, it might be blunt but we cant go on shielding forever, if this vaccine doesnt work very well for us no vaccine ever will.
I believe Covid will be with us for a long time, if not forever, we are going to have to live with it, and in my opinion relaxing restrictions is the right thing to do while the levels are low like they are (deaths/hospitiliations), its not just covid that affects people lives, people have lost jobs, suffered serious mental illness throughout.
I know there will always be people, despite full vaccination, who will sadly get ill, or die, but then how many each year have the flu jab, think they are safe, get flu, end up in hospital with pneumonia and die? It will be significant, the flu jab is less effective than this one, but no one tells us each year it might not be as effective.
Of course if we get hit with another wave that evades vaccines and threatens to put a strain on the NHS then alternative approaches may be needed, but for now, my opinion, we need to open up, let people live their lives, and for those of us who may need to be more careful, lets do just that, the best way we can.
I agree with a lot of what you say, as in the end it's personal responsibility for our own actions that is needed. However there seems to be no guidance on individual risk easily available, and we are all different as to severity of conditions and medication etc. I also feel the classification of MPNs as technically being blood cancers might unnecessarily cause anxieties and distress - but we don't know! Ideally we would each be able to have personal advice, but failing that we just have to make individual decisions. I am being far too cautious probably but just am not willing to take any risks atm. This limits life for myself and husband so we maybe need to reassess our situation.
Hi Paul_1971Like you I am great believer in taking responsibility for my own body and health, using my common sense and trusting my ‘gut feelings, also come into play. However, sometimes I seek advice from people who are knowledgeable and can help me to reflect and perhaps make a wiser decision.
I think, recently I have let my guard down and these discussions have led me to reassess where I choose to go and I am much stricter with myself about mask wearing.
I'm of the same opinion as you Paul.I have a double whammy with PV and lymphoma and have isolated for a long time. Not seeing my family and friends has had a really negative impact on my physical and mental health and made me quite unwell. FOR ME, I've decided I will no longer isolate but as you I will be carful and try not to put myself at risk but I will see my family and go out. Up to now I haven't been going to shops but I will start doing this again very soon because as you say Paul covid is going to be with us for a long time so, FOR ME, I'm going to have to find a way to live alongside it. Obviously this is an individual choice and people need to do what they feel comfortable with based on their own risk assessment and their personal circumstances and continue shielding if that makes them feel safer.
I totally agree with you. I have now returned to the gym and leisure centre, being a keep fit person all of my life I have missed this so much. I do a lot of cycling and walking so was at least able to continue with those activities. I have ET, take Hydroxycarbamide and Clopidogrel. My aim in life is to keep myself as fit as possible through exercise and good diet this I would not be able to achieve stuck in the house shielding. We all need fresh air (and vit D) and also some social interaction. I live alone, have remained sensible throughout this 'historic event' and I do not feel that I need an official letter to emphasize the importance of 'staying safe'. We will all deal with this in our way depending on our levels of anxiety but for me I feel I have made the right choice but I only hope my luck does not run out. Best wishes to everyone in the MPN community.
Thanks Nellin - I just replied to Jilly -I go out socially & regularly take the lateral flow test - not perfect, but neither is PCR! I also try to be really careful - none of it is easy for us...
Thanks Annula,You are right, none of this is easy for any of us, the world has been ‘Topsy Turvy’ and we are all trying to put it upright again, having learnt we need to accommodate a new way of living .
We do the Rapid Antigen Test weekly and before visitors come to the house. We are all trying to do the best we can. Take care
Hi Nellin. Your concern is understandable. Some data about MPNers is needed because only 3 people with MPNs were in the earlier study.
Someone recently posted on this site the link to a British Journal of Haematology article dated 16 June 2021 that had the results of a study of people with MPNs attending an Oxford University hospital 2 weeks after their first dose of Pfizer or Astra Zenica. So that will give you some data on this topic. I'll post the link here again:Impaired antibody response to COVID‐19 vaccination in patients with chronic myeloid neoplasms - Chowdhury - - British Journal of Haematology - Wiley Online Library
One of the authors of the study Beth Psaila tweeted a very brief summary of main points:
"- antibody responses after the 1st vaccine dose were ~60%, so overall lower than in a large cohort of age-matched healthy controls (98% response rate), with lower antibody titres. Notable differences between groups & treatments - excellent responses CML and MPN on interferon.
- lower response rates after 1st dose in MPN patients on hydroxycarbamide or rux, but latest data so far suggests they catch up after 2nd dose. No difference in response rates between Oxford-AZ and Pfizer vaccines.
- Important findings that we hope will help guide optimal vaccination regimens for our patients.
Qsn Any plan to look at effect after booster?
Ans Yes, we are doing that at the moment, and data so far looks very encouraging re high seroconversion rates after 2nd dose."
Nellin, if you want more specifics you'd need to read the article. The results for people with MPNs are highly variable depending on the type of MPN and your current treatment. But I hope that helps provide some information. Best wishes.
Thanks MPNBlog, for the information, I have a copy of this study and it helps to keep me informed, looking forward to the next one. I am glad that the issues are being raised for all people who have Blood Cancer no matter what type, keep everyone comfortable with the risks they may take, and stay safe.Nellin
Hi. I have PMF, and am taking ruxolitinib. I had two shots of the Pfizer vaccine, and coincidentally, I was one of the random sample of people in the UK who did a postal antibody test. And I do have antibodies. Its all about choosing the least bad option: getting covid would be a nasty way to die, ( I’m 72) but life without people contact wouldn’t be fun.
Hello Nellin, I had Covid-19 last September but fortunately it was very mild and I was amazed when I was shown to be positive. Anyway I have been using the Covid-19 by Zoe app for a long time and on two separate occasions they asked me to have an antibody test. Both test results came back Negative "showing that I probably have not had Covid-19".(This is not the same antibody test to prove the vaccine is working in our body. )
I have had post PV MF since 2010 and on Ruxolitinib since early 2014.
I go out and meet friends and wear a mask when in shops and along a cycle/foot path near me when it is busy.
Take care and sensible precautions, but try to enjoy your family and friends, with best wishes to all from Michael
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Any ideas on Covid risks folks?
Blood cancer and Covid 19 Vaccinations
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