Hi there forum family,
We hope you’re all okay?
Firstly, thank you so much to one of our lovely forum members GillM, who very kindly shared our response on our twitter page to the first study on vaccine effectiveness in people with cancer.
Just in case anyone might have missed this, we thought we’d share a link to our response again, here below:
We respond to the first study on vaccine effectiveness in people with cancer | Blood Cancer UK
Take care everyone, and please remember, the forum and our Support Services team are always here to talk anything through,
Warmest wishes from the Support Services team,
I read this with dismay. My partner has CLL and approached the Marsden about getting his 2nd dose sooner or getting tested to see antibody response. He was brushed off with “no” for both. So disappointing. We don’t know what to do or where to turn to. He has been shielding for a year, unable to see his children and only able to see me when I can isolate first. It feels utterly hopeless.
Hi @Roopy99, yes, we have been shielding for a year now, it’s a very long time.
I also have CLL and I expect that I will get my 2nd vaccine, but in 3mths after the first.
Personally I do not feel the antibody tests available, mostly privately, will give me much information currently.
My thinking is any vaccine is better than no vaccine, but I don’t think there is enough data on the effectiveness with people who have compromised immune systems so I will just wait and see what the medical experts and Blood Cancer UK advise.
I am sad to hear you feel utterly hopeless, it must feel horrible.
I had counselling which helped me when I was first diagnosed.
We are here to support you both and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at firstname.lastname@example.org.
Please keep posting how you are.
Does anyone else have similar feelings?
In the same situation, waiting for a second dose of a vaccine that may prove to be ineffective after an entire year of shielding.
When is PHE going to ascertain that the vaccine it is using to protect the Clinically Extremely Vulnerable actually works for that category?
In my view, this inevitably leads to a “leap of faith” moment, where blood cancer patients either continue to live outside society or rejoin it at their own peril.
Hi @gboscherini, yes, it is so difficult to get meaningful data isn’t it and we are also so individual.
Myself I am going to take a ‘leap of faith’ when the medical experts advise, but have my ‘parachute’ face mask on, avoid crowds, social distance and wash my hands etc. for a good while.
Stay safe and keep posting, we have come this far together on this forum.
I was starting to think to the future and make tentative plans for the summer but this news really dragged my mood down on a day when I had a bad experience with a canula at the hospital. I don’t think i could bare for the current situation to continue indefinitely. If these findings are correct, at some point I’m going to have to make the decision between choosing to get on with my life and taking a calculated risk or accepting that this is all there is
Sorry @Franko to hear that you had had a bad experience with a canula.
Yes, time marches on, a year now, I know you like your holidays, it is tough but we are all here to support each other through these times and beyond, you are never alone on here.
Don’t despair Franko, at times the news we are getting from all sources, especally the media, has to be taken with a pinch of salt. Some news outlets seem to have an agenda. I have reduced my News and TV input substantially over the last several months. I rely on what I consider is the best and most well meaning advice. So far that is Blood Cancer UK. I also find that I can only absorb a certain amount of information. It helps if you are a ‘Bottle Half Full’ person, as I think I am, and I personally put my faith in the experts we hear from at Blood Cancer UK.
I really do believe that over time, things will improve substantially for ‘Blood Cancer’ sufferers, (but it will take time I’m afraid’) However personally, I have a plan A, B,C, and so on if needed. In the meantime, my advice to you would be, to keep yourself relatively fit and eat healthy. with, It doesn’t matter what you do, or at what level, as long as you are doing something consistently. At the end of the day, it may come down to us doing our 'Health and Safety checks, and making the decision, either to sit at home for ever, or get out and about sensibly. I do not think, that it is going to come to that, however, and things will get better, for you. (Hard though it may be for you to accept this Franko.) All the very best to you. Ron
I have decided to rejoin at my original! I was advised to pester my doctor to get my second vaccine sooner after a private test showed I had no antibodies after my first vaccine. I got my second vaccine 4 weeks early.
I haven’t had another test as there doesn’t seem any point. If I still have no antibodies what can I do?
Today I hugged my 5 year old grandson for the first time since I began shielding during the first lockdown. I have been in shops and cafes.
We have booked 2 weeks in Kos for next month. Hoping we can go Also booked a cruise and a holiday to Cornwall for August and a world cruise for 2023.
Can’t be expected Ted to blocked away indefinitely. It is time to start living agsin
Wow, @ilivesunshine, 3 holidays, it seems like a good plan to me.
I am living holidays vicariously and I look forward to hearing your experiences and adventures. Take care and stay safe…
Holiday to Kos cancelled. So disappointed but still 2 more booked for August. Got the results from my latest blood tests and all is well so shouldn’t complain
Oh @ilivesunshine it must be so disappointing to have holidays cancelled, fingers crossed for August for you and good news about your blood tests.
Having had my first vaccine in February…Astra zenica… I suffered an anyeurism in.my head 3 weeks later… and had to be admitted to hospital. My platelets were normal in.hospital but I take low dose chemo medication and and Angralide which had just been increased for Essential thrombocytosis ET…
I’d never stayed in hospital before. Had to have a stent fitted due to my anyeurism. I can’t definitely say the vaccine.caused this but as I’d had side effects and reported it to the yellow card scheme…
I’m now 3 months since my stent was fitted and I’m.ok… I just don’t feel.comfatable about the Astra zenica vaccine so haven’t had my 2nd. Being honest I’m to scared to … my platelets are normal at last and my chemo.has been reduced slightly…I’m.waiting to see what happens. I’m.still partially shielding and I won’t risk it. I see Neuro surgery team in 2 weeks …I’m waiting to get advice from.them
Hi @Hmc63, I am not surprised that you feel scared to have your 2nd Astra Zenica vaccine and I think that you are are doing exactly the right thing in talking it over with your Neuro Surgery team in 2 weeks, don’t forget my trick in writing all fears, symptoms and questions down first so I cover everything for peace of my mind.
Please let us know how the appointment goes and take care, you have done so well with your recovery since February.
@ilivesunshine sorry to hear your holiday was cancelled I know you were looking forward to that! Really glad to hear all was well with your blood tests!
Appointment with Neuro surgeon went well. Astra zenica didn’t cause my anyeurism and reccomend rd to get my 2nd vaccine .
Had mri scan today and the consultant was quite happy with my progress
Strongly recommended I get my 2nd dose.
Blood test next week all go
Hi @Hmc63, good news with your mri scan.
Let us know how your blood tests go.
How do you feel about getting your 2nd Astra Zeneca vaccine?
I’m ok about it slightly apprehensive but I don’t want covid… my consultant was quite happy the vsccine vdidnt cause the anyerism or rupture… thought of getting covid is frightening…my platelets are normal now 169 and I’m.on blood thinners so hopefully I’m quite ok. Ive seen the photos of the anyerism and the stent being fitted… quite amazing
Wow, @Hmc63, your results sound OK to me too.
Those are photos of the aneurism and the stent being fitted are definitely for the family album, I bet they were amazing.