Has anybody else received an email from blood cancer UK regarding the Covid vaccine? If this has been discussed before then please excuse me.
I felt so deflated after reading it because I was chomping on the bit to get inline for the vaccine so that my life could go back to some form of normality. The email stated that people with blood cancer will be put on the priority list, as well as those over 70. It also stated that people who live with people with blood cancer will also receive the vaccine as a priority, but it then says that they will receive it because the vaccine will not work as well with people with blood cancer. This really deflated me and I felt that little bit of hope slip away.
If anybody wants to read the email I am happy to post it.
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jillydabrat
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Hi Jill, nice to hear from you. I'd be really interested to read the email if you could send me a link. I must admit I have reservations about receiving the vaccine and every bit of knowledge about it helps. Hope you're well as possible and keeping safe. Also hope you enjoyed your break in the wilds around bonfire night to protect your dog. Love, Fran xx
I’m delighted to share the news that people who are clinically extremely vulnerable, including 200,000 people with blood cancer,
have been made a higher priority for getting the coronavirus vaccine.
Previously, people with blood cancer aged under 65 faced waiting until a vaccine had been offered to everyone aged 65+.
Although we've not yet had confirmation that any of the potential vaccines will be safe and effective for people with blood cancer, the Government has confirmed that clinically extremely vulnerable people should be offered it alongside the over-70s, meaning
they're likely to get it sooner.
The priority list now also includes adults living with clinically extremely vulnerable people. This is because many vaccines are not as effective in people with blood cancer, so protecting the people they live with can be an important way of protecting
them.
This is great news and follows us campaigning, raising the matter in Parliament, and having our letter printed in The Times. We're very grateful to the Government for listening to the voices of people on blood cancer on this.
However, it's also important to remember that the Government may change the priority list again if some groups seem more likely to benefit from a particular vaccine than others.
We know people with blood cancer are following developments on the vaccine closely, and we’ll keep you updated as we find out more. If you’ve not done so already, it’s worth reading
our latest blog on the vaccine and blood cancer.
Kind regards,
Gemma Peters
Chief Executive, Blood Cancer UK
PS. If you’re looking for a way to celebrate the news with the blood cancer community, join us on Facebook Live tomorrow evening (Tuesday) at 7pm for carols, sing-alongs and Christmas cheer. I’d love to see you there!
Need to talk about blood cancer? Call our support line free on
Exactly. Protecting the people they live with, while we find out whether it is suitable for those with blood cancers, is the best way forward - a kind of mini-herd-immunity. If the vaccine is dead it should be ok. I notice that I was not offered a shingles vaccine, along with my partner, and can only assume that this is because it is a live vaccine, apart from the fact that I had a mild dose about five years ago. At least, as they say, there is light at the end of the tunnel.
I think it is really important to recognize what a broad range of diseases are encompassed by the blood cancers. It is quite a leap from ET to AML. The risks and responses to medications and vaccines are just not the same for all blood cancers.
The truth is we are just not sure yet how people with MPNs are going to respond to the vaccines. Theoretically, if you do not have a compromised immune system, you would not respond any differently. We do not appear to respond differently to the flu vaccine or others. There is no obvious reason why the COVID vaccine should be any different.
I would suggest taking the broad statements about people with blood cancers with a grain of salt when applying to MPNs. For someone who has entered leukopenia the concerns regarding vaccine may be different. I really do not know the answer to that one. Perhaps someone with greater expertise can weigh in on this question.
I still have not heard back about the clinical trials for the COVID vaccine at Johns Hopkins. I am thinking they will not be contacting me at this point. I do hope more people with MPNs will volunteer for clinical trials so we can have better data on which to base decisions.
Hi my friend, I am clinging to the idea that this is going to give me 'Normal' back. If I can't have hope then it's not a life I want to live. Hope you are keeping well. I have not been here much. I think I have had so much happen this year that I have kept to myself but from January 1st, 2021 I am going to say goodbye to this horrific period period and welcome in a gale of positivity for the new year x
Hi Jillydabrat hope you are keeping well. Maz is taking a well deserved week off, so I’m looking after things this week. My name is Marilyn, I’m part of the MPNVoice team. I’ve had ET for 11 years on Hydroxycarbamide and Asprin. I’ve contacted Prof Claire Harrison, as we weren’t aware of the Blood Cancer U.K. email. From Prof Claire.... basically, it really isn’t known how well any of the vaccines will work specifically on MPN patients as, as far as she is aware, no testing of the various vaccines has been done on people with MPNs.
Hopefully things will become clearer, but in the meantime, we will all hope that the vaccines will help protect us..... maybe just like the pneumonia and flu vaccines do.
Hi Marilyn I am taking the same medication as you as have polycythaemia vera ruba. My gp said I didn’t need to shield in the lockdowns. I am still unsure whether I am entitled to apply for vitamin D prescription. A couple of years ago my consultant advised me to have vitamin D but my gp said it costs £50 to do a test and was reluctant to authorise one. I feel as if my gp couldn’t careless about me, should I insist on getting it? Any advice welcome. Thanks
Hi Anneian hope you are keeping well. I’m speaking personally now as I’m in the same boat as you. I never got a shielding letter and my Haematologist and GP didn’t think I needed to ‘shield’, just be very careful. I always try to be out and about, obviously with good sunscreen, to get as much natural vitamin D as possible during our spring and summer months. From late September to late March, in the U.K. the sun isn’t strong enough, so during those months I take Vitamin D3. Following dosage, when to have it etc. You could speak with your GP, in light of the recent information about the benefits of Vit D and ask if you can have a prescription for it. Hope this helps. Have a great week.
My GP has just requested bone density and blood tests including vitamin D and osteoporosis. I was taking Vit D until a few months ago, so I wonder whether it will show up in the tests. I've been diagnosed with compression fractures in my back and my GP has suddenly sat up and taken notice. I only had a bone density test 15 months ago and have sent her a copy of the report which shows nothing untoward. I do think it's time the Haematology department and my GP started to communicate.
Hello Maggie times are so tough and like you lm struggling with back pain and an unreliable GP how did you manage to get a diagnosis for your fractures and did you receive any vitamin D. Thank you Murina
I was already getting my own vitamin D from a company called Nyvana.
My diagnosis for the compression fractures came from an MRI scan that was ordered by my physiotherapist. He said that they were caused by my blood cancer and that he would leave it to the haematology department to deal with it. My appointment was to have been next Tuesday but yesterday, after much messing around with my mobile and my laptop, I found a message postponing it until January. Another month of pain.
My partner has booked an appointment for me with a chiropractor but the physio and Macmillan nurse said I shouldn't have any treatment. So now I am in limbo. There doesn't seem to be anyone at the haematology department, and with a GP who doesn't seem to be clued up at all, I don't know what to do next. Very depressed.
Hi Maggie l have been getting vitamin D from Holland and Barrett costs about a tenner for a liquid spray bottle. I mentioned a bone density test to me hematologist but l didn't seem to get a response but l will keep trying. I was also told not to access physio but instead to try an Osteopath,as soon as it safe to go out and about and face to face treatments are available again this is what l will do,painful though. Thanks for your thinking.Murina
Physiotherapists only give you exercises these days. I used to visit an osteopath regularly 40 years ago - not particularly painful, and I wouldn't expect a chiropractor to be painful either. My partner has not cancelled my appointment so think I will go along and talk to the chiropractor, and perhaps she can sort out my scoliosis of the upper spine. I'm sure she will know not to touch me if my bones have collapsed due to osteoporosis. I don't know why my physio said it was due to the blood cancer, as osteoporosis seems more likely but he ruled that out. So much conflicting information. It was like drawing blood from a stone to get anything out of him at all! I expect you could set up an appointment soon - wearing facemasks and one to one. If my partner had an appointment last week, I don't see a problem with you getting an osteopathy appointment.
I have just joined the NHS trust for my local hospital, which gives me access to all documents, letters, etc. online. Amazingly, I discover that the hospital has, in fact, been communicating with my GP! I also discover that they are going to investigate whether my compression fractures are caused by osteoporosis. I see that historically, they mention that my spine is deteriorating somewhat. So I'll just wait for the DEXA scan appointment but I only had one fifteen months ago! I was surprised at how quickly I was able to access everything online, including all the blood test results that I was never given! I have already sent a note to my GP about the possibility that she might decide to change my pain meds. I suppose everything hangs on the DEXA scan.
We all have to have that hope and I am clinging to it. Maz! On holiday!! Shouldn't be allowed lol. Only joking before I get pounced on. Thank you for getting the info from the expert xx
Hi Jilly hope you are keeping well. I also got this e. mail from Blood wise, good to read but then as you say that bit that said they were not sure if it would work for people like us, but other family members should have it to protect us from Covid, so really none the wiser, I was getting all excited like you, and have now hit a bit of a low. Hope they do find one that works for us.
Also got an e.mail regarding the vitamin D supplement and how to apply for the three months, not going to bother as I use a vitamin D spray which works better for me, the tablets in the past have upset my stomach but the spray is much better, although it’s a high dose one spray a day into my mouth it is really helping with my joints already.
There seem to be two concerns being raised here with regards to blood cancers and specifically, MPNS.
First, is the vaccine(s) ‘safe’. And second, is the vaccine ‘effective’.
As far as I understand there are no reasons as to why the average MPNer cannot have the vaccine on the grounds of safety. The Oxford vaccine at least, is a traditional vaccine and it is not ‘live’.
Second, as far as effectiveness is concerned, well no vaccine is 100 per cent effective. The question is, is it better than not having the vaccine?
As previous posters have highlighted, ‘blood cancers’ cover a very wide scope and one rule will not fit all. It may in any event emerge that a particular vaccine (or indeed a particular dosage of the vaccine) will be more appropriate for certain groups than others.
Hi Jilly - my only concern is that I was taken off the shielding list in May and do may not be offered it for months as under 50. I’d have it tomorrow if I could - I’ve barely been out the house since January as I sensed Covid was a threat long before the government took any notice. I hope you’re well. Jx
Hi Jilly can understand your concerns but keep going girl, we will get there in due course - I think the main thing is that everything at the mo is early days re the vaccine even for "normal" people (😀😉) so the wariness re blood cancer patients is because it's early days and the info/knowledge/experience isn't there yet as to how it effects or doesn't effect us souls with immune challenges etc - but the knowledge will come in due course and it's more then likely that all will be fine for us - I guess the guarantee can't be given until it is a little more sure - I've posted a link on another post from Blood Cancer Uk which gives bit more info of what is known at the mo re various vaccines which says more than the email which was more about the extremely vulnerable group being put further up the priority list and you may find it more reassuring - and they will keep updating us (they deal a lot with MPNs as well as the more acute blood cancers) as will our lovely MPN Voice friends as more information is available - so there will be better days ahead Jilly 😀😀
Hi Jilly from one creative to another, l much appreciate your message as someone recently diagnosed your post has given me loads to think about. I will certainly be asking for more information from my hematology team. Well back to creative journalling for me it's been keeping me sane, lm also keen to learn how to crochet such a great meditation tool.Thank you have a good day.
I have been knitting and crocheting like mad for a friend's new little boy. It is very relaxing ao enjoy. If you go on YouTube you will find lots of tutorials and patterns
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