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Vaccine and leukaemia

Hi I don’t know if I read it correctly I was reading something about the vaccination for covid and people with leukaemia and I think that I read that even if you have the vaccine you are still 30% more likely to die if you have leukaemia does anybody notice is correct thank youPS I don’t I know if I’m on the correct page so if I’m not

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Hi @Bobby You can post wherever you like and I think we are all dealing with the unknown a bit.
I believe there is not a lot of testing data out there on the effectiveness of the vaccines on people with blood cancer currently.
I am going on the theory that any protection is better than none.
There is a lot of reliable, up to date information on the Blood Cancer UK website.
The main thing is that you take care and stay safe and keep posting.

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Hello @Bobby thank you for sharing your question around this on here. I hope you’re doing okay. May I ask if you remember where you read this information?

We know how important it is to better understand the effectiveness of vaccine is for blood cancer patients given the increased risk of severe consequences from coronavirus. We talk more about this in this blog here - How dangerous is Covid-19 for people with blood cancer? | Blood Cancer UK

We still don’t know the level of protection that people with blood cancer will get from the Covid vaccines, or how this might differ between blood cancers. As you’ll know, some people with blood cancer have a weaker immune system, meaning their immune response to the vaccine might not be as strong as in someone without blood cancer, but the vaccine could still offer a level of protection, and some protection is better than none.

Please be assured that there is research going on that is looking in to this, which we are closely monitoring. You’re welcome to read about what we know so far, here - Covid vaccine efficacy and blood cancer | Blood Cancer UK
Over the last few weeks, Blood Cancer UK has been working to create a Blood Cancer Vaccine Taskforce, comprising of leading researchers who will make sure that the research is funded and coordinated in a way that will gain the best understanding of how people with blood cancer respond to the vaccine and are protected against Covid.

If you want to talk this through at any point, we’re only a phone call away on 0808 2080 888.

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@Bobby @Alice_BloodCancerUK Well it looks like that the Pfizer vaccine is not very effective to people with blood cancers as reported in the last couple of hours Cancer patients 'less protected' after first jab - BBC News. I was definitely hoping that the immune response was better than this small research indicates. And I hope that the timeline would change for cancer patients.

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@MoMo, thanks for your concerns, as I said on your other post, the unknown is the dilemma isn’t it, watch this space to see what is advised.
Until then please keep posting how you are.

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But you are less likely to die if you’ve had the vaccine than if you had not

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It’s a very uncertain time @Bobby , especially for people like us. There seem to have been lots of studies going on and some of them contradict each other. Like others I’d suggest that it’s better to have some protection than none and we should all still have the vaccine. The studies are not exact and we still don’t fully understand the level of protection that we will get. Hope you’re feeling better about this now.

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Hi Franco thanks for your reply I have had the vaccination about 5 weeks ago now but I suppose in reality because I lost my wife nearly 3 years ago my sense of I don’t know confidence took a battery in and I’ll probably do worry too much about staying alive obviously because I’ve got a beautiful family still and you’re right it is better to have a small amount of protection than none it stops me dying from it I’m ok with that take care my friend and all the best

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Hello @MoMo, just wanted to share our blog on these research findings, in case you and others hadn’t seen it - https://bloodcancer.org.uk/news/does-this-new-study-mean-blood-cancer-patients-arent-protected-by-the-covid-vaccine/. As it explains in this blog, whilst the findings of this study might immediately seem alarming, it’s important to emphasise that it is far from the full picture and there continues to be a significant gap in our knowledge about how effective vaccines are in people with blood cancer.

There’s info on this page about the Blood Cancer Vaccine Task Force, which has been set up to to identify and address potential gaps in Covid-19 vaccine research for patients with blood cancer - The Blood Cancer UK Vaccine Task Force | Blood Cancer UK
As always, if anyone wants to talk this through or needs any support, we’re only at the end of the phone or email.

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@Alice_BloodCancerUK Hi Alice, thank you for this link re the recent study. I read it and if I understood correctly the t-cell response is hugely important. Is there any studies going on where those blood cancers are part of in which t-cells are the cause of blood cancer? As a chronic neutropenic with abnormal t-cell activity I’m keen to gain more information.
Also I heard on other group that cancer patients are prioritised for second jab quicker, do you know anything about this?

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Hi @MoMo, yes, these are definitely questions for @Alice_BloodCancerUK or @SuBloodcancerUK

Just thought I’d put the link to our next Ask the Experts event coming up, which is on Covid-19 Vaccinations and Research on Effectiveness

Also @MoMo, so sorry I missed your questions around this, I will get back to you with some info ASAP!

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Hi @Alice_BloodCancerUK no worries, I’m sure you are busy. I’m not sure if I’m able to attend the next webinar about vaccinations… so if my initial questions can be forwarded to the panel that would be lovely.

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Hi @MoMo thank you so much for getting back to us, we’ll pass on these questions to the event facilitator, and the event facilitator will put as many questions as possible to the panel :slight_smile: :+1:

Take care,
Su

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Just saw this on another site. It seems that we may have a chance to get our second jab sooner… New vaccine advice for adults living with adults who are immunosuppressed - GOV.UK

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Just posting our latest Q&A for anyone who didn’t manage to watch it but would like to -

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Hi @MoMo hope you’re doing okay! Regarding one of your past questions, we aren’t aware of people with other types of cancers being prioritised for their second dose quicker and there is no mention of this in the green book here - https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/961287/Greenbook_chapter_14a_v7_12Feb2021.pdf
As you may know, we have asked the JCVI to allow clinicians to have the option to shorten the dosage timings for individual patients where they see a need. We will of course update our community if anything changes on this issue.

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Thanks for your replies I’ve been up line for a while however I have a new delivery I’ve had vaccine one and back seem too and I was told that instead of a booster I need a primary dose number three ask again through my doctor’s hematologists and getting blank blank blank I finally gets a letter sent to me from the haematology department at my hospital saying the NHS have decided to do a tick list but I must kill myself and take to my doctor if I was to have third primary dose well maybe I’m fit I can see nothing on there to do with my leukaemia I have Chronic lymphocytic leukaemia (CLL) and you know and I’m on washing weight the nearest I can see a box to tick it says patients under follow-up for low-grade lymphomas and I don’t know if this is the same as Chronic lymphocytic leukaemia (CLL) should I take it should I’m not but what I can say I’ve had it over the past 6 weeks this is been stressing me near to death and my doctor’s blatantly refuse to see me or talk to me about coded by been taken the letter from the JVC I only to be told by the receptionist who must be a qualified hematologist that the letter has made a mistake and it doesn’t matter to me could anybody please inform me firstly should I have the third primary dose secondly how do I get it thank you ever so much for your time Bob

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Hi @Bobby I’m so sorry to hear you’re feeling so stressed though it’s totally understandable. Would you find it useful to talk to one of us on the support team over the phone? If so, our number is 0808 2080 888 and it’s free and confidential. Please do feel free to give us a call Bob as it sounds so difficult for you at the moment.

I’d really encourage you to read this blog as it might help
What should you do if you have blood cancer and cannot get a third Covid vaccine dose? | Blood Cancer UK

You might find it useful to show your doctor the guidance from the JCVI and this joint statement from us and the British Society for Haematology, which explains who should be getting a third dose.

Also, as it explains on our webpage here -
We’re aware that many people haven’t been invited for their third dose yet. So, if you’re struggling to get your third dose but are invited for a booster vaccination (which may be happen if you’re over 50 or have another health condition), this is what we recommend:

  • If you are offered a booster vaccination using the Pfizer-BioNTech vaccine, have it. This is because the Pfizer booster vaccination and the Pfizer third dose are both full doses and therefore exactly the same.
  • If you are offered a booster vaccination with the Moderna vaccine, make sure you get a full dose . This is because the Moderna booster vaccination is a half dose. If you have blood cancer, you should have a full dose of Moderna as your third dose.

If you are invited for a booster AND and third dose of the covid vaccine, do not have both. It’s better to book a third dose, as that’s what you should be having if you have blood cancer. If you book a booster instead, make sure it’s a full dose. Book just one vaccination. You should not have both the booster and the third dose.

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Hi @Bobby this situation must be so stressful for you and I am so glad that @Alice_BloodCancerUK has responded to you first because she has responded to you so well.
When I feel really stressed I sometimes find it helps me just to post on here or talk to someone and it sort of diffuses it for me.
Please let us know how you get on.
Look after yourself.