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Hi has anyone been invited to have covid vaccine? I'm 5 months past donor stem cell transplant and was called this week about having it done at my hospital.
I have not yet been called as my county is behind on setting up hubs and putting in support to vaccinate.
I know counties are on target and some are a little behind.
It is good you have been called up.
How do you feel about it?
I hope they will be in contact soon. I think it will be a good thing another step closer to normality.
I am 2 years post. Which is maddness as it feels like it was only yesterday I was on my Day 0 receiving cells. A day I am sure is engrained in all of us.
Let us know how it is, the experience during and post. I think some insight would be great for others.
It is advised to still shield after which that side of things I find difficult. No time frame on shielding ending.
However, as you say I think it is a day we are all looking forward to as it provides some degree of hope that we are looking to the end of this intense way of life at the moment.
I had the Pfizer vaccine a couple of weeks ago. My arm was a little bit tender that night (I learnt from having the flu jab to get it in the arm you don't sleep on), apart from that I've been fine. Hopefully one step closer to some sort of normality.
Thank you for sharing your experience. I am glad it went well for you despite the sore arm. I know that can happen with the flu jab too.
All the best,
I guess the characteristics of the population in different areas has a bearing on how soon each priority group gets vaccinated. There may be areas with high proportions of elderly people so it may take longer to vaccinate those groups, so I can understand ho there might be inconsistencies as to when and how quickly each group gets vaccinated between different areas.
What is encouraging is the rate that the country as a whole is getting vaccinated and let’s all hope that the progress continues at this rate. I know there are concerns about the extension of the interval between first and second vaccines but having listened to genuine experts rather than gossip and media hype, I’m confident the vaccines will still be effective. Time will tell if my faith is justified.
Thank you Bernie for sharing your experience. I hope others will do the same as they get the jab as I think the reassurance that everything is ok is something we all need to hear.
I generally have no trouble with the flu jab other than a little tenderness, but my wife’s injection site usually gets a little swollen and quite S ore for a few days. It highlights the differences between us all and I’m sure our experiences as we get the Covid-19 vaccinations the situation will be similar. Hopefully though as more people get the jabs, the underlying trend will be minor or no issues and we can all gain the confidence that the vaccine is no worse than any other.
I’m hoping the call will come in the not too distant future and am happy to have the vaccine, though at 8 years post transplant I understand the nervousness of those of you much younger in transplant age.
Please keep posting your experiences of the vaccine as each of you get it, and hopefully we can help each other get some comfort from our experiences.
All the best,
I am just over 5 years post SCT transplant for AML. I received my (Pfizer) vaccine 16 days ago. I volunteer at my local hospital and I received this because our Trust recognises volunteers as healthcare workers. I had a sore arm for 24 hours, as I always do following the flu vaccine. Since then I’ve been fine. Psychologically it did feel like a weight removed off my shoulders. I have an appointment for the second vaccine in 10 weeks time.
I hope your ‘turns’ come soon and you are able to take up the offer to be vaccinated.
I had Oxford vaccine couple of days ago and so far just a bit of a arm ache all I had. My consultant assured me this was safe and a lot of post transplant stem cell patients have had this done.
Hi Laulau and Meercat,
It’s great to hear you’ve both had your jabs and all is well. I’m sure it will give comfort to other transplant patient's that might be apprehensive about the vaccinations. I’m sure we can all put up with a bit of soreness after what we’ve been through and from what we’ve heard so far it doesn’t sound any more than the flu jab.
Thanks for updating us.
Hi yes I was initially quite nervous being 5 months post transplant and having gvhd. I found a chat with my consultant really reassuring and the link Steve kindly published. Stay safe x
Just had the text a few minutes ago so my appointment is booked for Thursday afternoon.
That's fantastic news Steve! Hope it goes well.
Brilliant news 😊
This is fab Steve.
I got 'the' text this morning and managed to book this for Wednesday. I have to say for the frist time I had a genuine smile. Things dont feel quite as heavy knowing I will be put on the path to some immunity in the coming months.
Good luck with yours Steve and to any one else that is due to be vaccinated in the future.
That's great Michelle
I am now finally fizzing with pfizer.
I had my vaccination yesterday at a community hub which I found very well organised and easy to be processed. The injection it self was no different to the flu vaccine and the last 24 hours have gone very well. No issues. I have more challenges with the flu jab than the COVID vaccine which is a huge relief.
The amount of people they are processing in a day is incredible and really proves how hard the NHS, volunteers and trasports of the vacvine are working to get us all protected against the virus.
Hoping to see more of the CEV community vaccinated soon.
I had my vaccine yesterday afternoon, in my case the Oxford AstraZeneca one and like you I've had no issues so far, other than a very slight ache in my upper arm. Even the initial tiny amount of bruising around the injection site has receded to barely noticeable.
My vaccination was done at my local GP surgery, less than two minutes drive from home, as they are one of the local vaccination centres. The whole process was smooth and really well organised. Very little waiting (5 people ahead of me in the queue) and I was in and out in under 10 minutes.
I was speaking to one of the volunteers who told me that there is no period of waiting after the AstraZeneca injection so you're free to go straight afterwards. She said that with the Pfizer one you need to wait 15 minutes for observation before leaving? The only thing was that I couldn't drive for 15 minutes so had to sit in the car for that period and listened to some music, which was no hardship.
I find it really encouraging to see how quickly and efficiently the vaccines are being rolled out. To think that we are a fifth of the way through the adult population in the UK is remarkable. It gives hope that the end of this pandemic is just over the horizon and our freedoms will soon be restored.
All the best everybody.
I had the Oxford vaccine 20 days ago. I was left feeling a bit run down for few days and it gave me sore joints in my hands which have not yet cleared up.
Last week I started to get a tingling/burning sensation in my left hand which is now also in my right hand and feet.
I visited Hematology day case as a precaution yesterday and spoke to a Doctor who felt it was most probably a reaction to the Covid vaccine.
The decision was to monitor for a few weeks and see what happens.
I also completed a yellow card for the Oxford vaccine so they can see if I am a one off or if this is affecting others who have had this particular vaccination.
Sorry to hear you have had side effects but good you seeked a visit to the Hematologist. Fingers crossed it clears up
It is intereating how the Oxford vaccine seems to be causing more symptoms for some in comparison to Pfizer.
Keep us posted on how things go.
Wishing you the best
Thank you Michelle.
Unfortunately the tingling and burning sensation is getting worse not improving, I am not so sure it is due to the vaccine. Another phone call to the Heamotolog department might be in order.
Thanks for posting on the forum, I am the lead nurse in patient services. Its good that your Haematology team are aware of you symptoms and I would encourage you to contact them if you feel they are getting worse. I would expect the symptoms to improve over time if caused by the vaccination. So its definitely best to check in with the medical team or your GP.
Feel free to update us on here or give us a call if you have any further questions.
I just wanted to add group six of priority groups covers carers. It is put in as addendum on the goverment website. If you rely on a person for full time care so if they got ill you wouldnt be able to cope they may be able to get your carer the vaccine. Speak with your doctor. I'm six months out and reliant on my partner.
Stay safe x
So it is now about 6 weeks since I had the Oxford jab and I have definitely developed Peripheral Neuropathy. If this is due to the vaccine or something else has not been established and probably never will be.
Unfortunately the only solution offered by my consultant was Pregablin, a pain killer.
Peripheral Neuropathy is far from pleasant and comes as a real set back two and a half years post transplant, not helped by my wife who seems to think I am pretending it is a lot worse than it it actually is.
Fortunately my feet are not to bad but my hands are awful, especially in the early hours due to the burning/tingling pain and stiffness in my fingers when I wake up.
Hopefully time will help bit I have a nasty feeling I am going to have to learn to live with this.😞
I think I will ask to be referred to a neurologist.
It sounds like a tough situation for you. It can be unsettling to develop new diagnosis' after 2 and half years post SCT.
I am sure you are feeling frustrated but does knowing what your experiencing help in any way?
I take pregabalin and it is a nerve pain killer so hopefully it will give you some relief. It is a drug that, in my experience, has been flexible. On bad flare ups i have higher doses and on occassions I have lower doses.
I have never had side effects so hoping you get on well with it too.
Peripheral Nueropathy is incredibly uncomfortable. I have it, although in the warmer seasons i find it isn't too bad. Post SCT my hands where badly affected but wore warm gloves and compression bandages on my hands which helped. Unsure on why!
I hope in time you can find ways to cope with the pain. I would ask to be refered to a Neurologist. They can advise on pain therapies and medications.
I see a pain team and it real helps with working through the acceptance of long term chronic pain. It will help your wife also to understand Neuropathy and its 'invisible' presentation.
Keep us updated
I had neuropathy in my hands a year after chemo.it started in one and moved to other. I saw hand specialist and neurologist. I think neurologist is right person to see.
Mine was more to do with numbness it wasn't painful but restricted my use of my hands to the extent I couldn't open my front door or put on earrings.
I'm not an expert but using a hand splint helped at night. It takes time for the nerve to regrow 8 months or so but it did get a lot better eventually. It flares up every now and again when I'm stressed but am able to do things.
In mean time I was told to avoid muscle wastage in my hands to do exercises like squeeze a stress ball a few times a day and use some stretchy bands round my fingers.
I can understand it is very hard but hopefully it will improve over time.