I had my 1st booster last Wednesday, 3 months after my 3rd primary dose. I have ET. I have been on Hydroxycarbamide for almost 3 months.
I had no initial reaction to the vaccine, Moderna Booster after 3x primary Pfizer.
2 days later I had what seems like a large blood bruise in the right groin.
Today there is the same on the left side, at the knicker line. (No they are not tight)
It only occurred to me this morning that this could be vaccine related.
I rang the emergency number for the weekend which takes me to the haematology ward. They contacted my consultant who said it would have nothing to do with the vaccine.The nurse said to monitor over the next few days.
Not being satisfied with this result I looked up some info including NHS re Covid post vaccination…* a rash that looks like small bruises or bleeding under the skin, is marked with a
Red - Call 111 immediately if you have…
So I tried, then tried online, and back on the phone. All landed with see your GP or monitor, and I could not get through to a person.
I have also read that Moderna (Spikevax) shouldn’t be give to people with Blood disorders.
And that the vaccine could upset the platelet levels. I was not on HC for previous vaccines.
Hoping nothing will befall me over the next 24 hours, my plan will be to contact the Haematology department tomorrow, discuss all information, and and ask if it is possible to have a blood test to monitor whether there has been any platelet interference. My consultant has said I will be prone to bruising, but I have not had any prior to this. If I get no help from them I will try the GP and ask the same.
So, basically I am asking if anyone else has had similar problems?
I bruise very, very easily,
I have also read a very small study, that covid can increase platelets, as it’s what the body does as an immune response
and that az induced more platelet activation than mRNA
this is the link to the info
Hi @Modesigns, I hate getting new health problems and always at the weekend, and I never know if they are blood cancer related or something else completely.
It must be so scary for you this weekend.
Gosh your have been busy though this weekend and I also hope that nothing will befall you over the next 24 hrs.
Please let us know how you get on tomorrow.
Look after yourself
My lovely Clinical Nurse was very reassuring as she dealt with my questions. I think the bruising is getting lighter, and they think it is probably co-incidental that I have it, but ask me to get back in touch if the bruising increases in size.
Hi @Modesigns - thanks for starting this thread. It’s good to read that the hospital ward was able to speak with your team for guidance about the bruising, and that you subsequently were able to speak with your CNS and are now feeling reassured.
There are processes in place to monitor safety and effectiveness of medications and vaccines via the Yellow Card Scheme. Both healthcare professionals and patients can report any side effects they think might be related.
The vaccines currently in use in the UK (Pfizer, AstraZeneca, and Moderna) are considered safe for people with blood cancer and the rest of the population. As with any medicine, side effects can happen, but the approval and quality testing processes for the covid vaccines mean that serious side effects are rare. We have more information about what we currently know about covid vaccine safety and effectiveness in people with blood cancer.
There are very few individuals who cannot receive the Pfizer BioNTech, Moderna or AstraZeneca COVID-19 vaccines (the Green Book explains more on page 35) and as always we would encourage anyone with concerns to talk to their treating team - COVID-19 Greenbook chapter 14a (publishing.service.gov.uk).
Hi Modesigns, I dont know if this is any help but I had a friend who had the same reaction after the vaccine (not a blood cancer patient) . He did see his GP several times and they were quite bamboozled with it and decided to monitor it. It eventually went away on its own…I do think its a good idea to get the blood tests to check your counts. My husband was ill from the day after he received his booster jab. He was diagnosed with acute leukaemia three weeks later. The consultant said it was just co incidence but i’m not sure. Everything is not known about the vaccines yet so when something crops up i think it needs investigating.,hopefully the bruising goes down soon
The sun helps the mood doesn’t it. Because I am just starting the treatment I have been advised to get 4th vaccine asap, so have found a walk in clinic near me tomorrow, can’t see which vaccine they’re offering though. I previously had AstraZeneca for first 2 doses and Pfizer for the 3rd, my son tested positive for covid this morning, perfect timing. I have been advised to go ahead and start the treatment anyway just so long as I’m testing negative, my platelet levels this morning we’re 1487, which is slightly down from last time when they exceeded 1500. They left them go as high as they could because apparently at the age of 53 I’m still young for starting on this treatment, it’s nice to be considered young for something, that hasn’t happened in a while. Anyway I ramble on, hope the marks on your legs do turn out to be nothing to be concerned about, keep us posted
glad you have got some good help now Modesigns - as it is frightening if something comes up after a vaccine and it is the is this normal or not thoughts that go through your mind constantly! - I know I was really ill after my very first Cov vaccine (i have had all four) all very disconcerting and had to have a scan on my spleen but all was ok - i think for some of us the mix of the blood cancer, our meds and a different type of vaccine to what the body is used to can throw up some odd bits and pieces that just need checking but are actually ok! But as a fellow ET patient and I had 13 years on Hydroxy (Peg now the last three years) do know that bruising and odd bruising is part of our condition for many - it seems we bruise far more easily and whereas a big bruise in a “normal” person would come from a real bump or fall etc in us it can come from something very simple and light - sometimes my dog has only got to sit on my legs and I will have bruises - and she is nice and light! I know in my early days it used to really worry me if I got a lot of bruises and then you become used to it ! - and it does ebb and flow too - sometimes along with platelet counts being a bit higher or not - All the best
Thank you @Alice_BloodCancerUK. I did clock my reaction on the Yellow Card Scheme, and on the Zoe Covid app, after speaking with the Clinical Nurse Specialist, and I find it reassuring that this information can be clocked somewhere. There may well be more information about this group of vaccines than about any other inoculation programme in history…especially as people can clock information on official sites. Researchers will have reason to be very grateful!
I am monitoring the bruising. It is growing a little, but I am far less worried about it as yet. The CNS didn’t think it was necessary as yet to take more blood tests, I think probably because last tests were 2 weeks ago. My next official ones will be in June.
I do have reason to be very grateful for the extra information on Facebook regarding actually getting the extra vaccines. I am not at all sure how I would have easily navigated my application for 3rd primary or subsequent booster. Of course would have phoned BloodCancerUK if necessary. But FB was a good reminder.
Hello @Catpat! That is interesting on both counts. Thank you. In non Covid times I would have had no hesitation in asking the GP for an extra blood test , but getting to the GP ATM is so difficult. I am happy to wait as I have had very recent blood tests, so it should be possible to do a comparison if needed. The Clinical Nurse Specialists were happy with that for the moment.
So much is unknown territory ATM isn’t it! Some things will not be known for a long time. From another perspective, it could be that your husband had as yet undiagnosed acute Leukaemia, and that the Covid Vaccine reaction brought about the blood tests to reveal it. My ET was diagnosed after a routine blood test after I said I had had a bleeding nose, which was a throwaway comment I made during a GP telephone consultation.
But, for you, with your husband being diagnosed with acute leukaemia, that is not an easy outcome to deal with, for either of you, though in different ways for each of you. I do hope that you find a lot of information and support through this website. It has been enormously helpful and supportive to me.
Hello @Taz! It does! Good to hold on to in my mind as we go into the cold spell.
All the very best for you in the early days of your treatment, and for your booster.
I am no longer so worried about the bruising, but am keeping vigilant just in case. Am so grateful for the help from here, and from the Clinical Nurse Specialists. I do wish you well on this journey!
Thank you @Jilly20! I have yet to work out how these bruises occurred! I mustn’t overthink!! Was it sitting down? Going for a long walk? Doing the garden? Goodness knows! Will keep monitoring. The start of things to come?
I have only been on Hydroxy for three months, and known of the condition for 6-7 months. Still a new journey. What is Peg?
Thanks for your reply @Modesigns , How is your bruising now? Hopefully it is disappearing. You are right, so much unknown Territory atm. It just seemed to be a big coincidence that he got flu like symptoms the day after the booster, and he also developed nose bleeds after about 10 days. Like you, this seemed to be a red flag for nhs 24 who were amazing. Maybe there is also a possibility that the vaccine triggered the acute leukaemia. I suppose we will never know but it has made him nervous about future jags especially as his bloods are now improving. Anyway, it is good to talk and share our experiences. I hope you are ok now, take care xx
Thank you @Catpat! No it has not yet gone, it has spread a bit, but more as part of the bruising process I think. Am still keeping an eye on it. You are right, so much unknown. I am less worried. No idea how the bruising happened, but am muddling along with life meanwhile! You take care too. XX