Hi Julian, I have considered this and if it came back positive great. If negative I’m not sure how I would feel as I know there is a lot more to it. I always read the Blood Cancer UK information page on the Covid vaccine and am still yet to decide.
I’m really glad you go a positive. Has this given you some comfort?
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Hi @Julian as @Nichola75 wisely says I follow what Blood Cancer UK and my medical team information advise.
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Nobody has mentioned having an antibody test to me but then my medical team are not the most caring or sensitive of people and having shown much interest in my progress. I’m inclined to agree that I’m not sure that I want to know in case it’s bad. Ignorance is sometimes bliss!
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We need greater standardisation on anti body tests. It’s all a bit in the lap of the gods at the mo… Can bcuk do something on this - either get one for us all on the NHS or get together a recommended list.
I have ET and am “very well” with it. I assume I am not particularly immuno compromised (?) But don’t really know. There are so many don’t knows for us - leading to much confusion.
I am not even in the shielded group - taken out by my hosp as not felt necessary for me - a leading research hosp. I take hydroxycarbamide daily and have so far had no side effects.
Everyone with a blood cancer needs an individual result on whether, or how much, they are covered by the vaccs.
I go out and about a lot - but am not going to hug!
Cheers.
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Hi a great big welcome @patmroberts to our forum, I am glad you have found us.
I believe Blood Cancer UK are campaigning and working with other organisations to raise funds for research into the real meaning of antibodies for the blood cancer community.
Their website has up to date advice.
I will copy this to @Alice_BloodCancerUK and @Bav.BloodCancerUK.
If you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk
Enjoy yourself and as you say perhaps no hugs yet, take care and I look forward to hearing more about you.
Thank you so much for sharing your thoughts @patmroberts. We know it must be incredibly difficult for people with blood cancer to make decisions and choices when there’s still so much uncertainty. We will work to ensure there is sharing of data across research studies, address potential funding requirements, influence policy and clinical practice and engage and communicate with the blood cancer community. You can read more about the group and its members here: https://bloodcancer.org.uk/research/the-blood-cancer-uk-vaccine-task-force/.
In case you find it useful to read through, our blog here explains more about what antibody test results might mean for blood cancer patients and why it’s difficult for our community to use the results from an antibody test to provide certainty about whether they are protected or not.
In terms of getting an antibody test, you may want to ask your hospital team for a test but they are currently not given to patients by default because of lack of certainty around their response as mentioned in our blog. Availability of these tests varies from place to place.
Please do give us a call if you want to talk this through at any point.
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Hello all, hope you’re doing okay. Remember we’re only at the end of the phone on the support line if you want to talk anything through.
Just wanted to share a webpage (see below) that has been recently updated to reflect the further lockdown easing. It talks about some things you can think about when weighing up risks and making decisions -
Coping with risk and uncertainty as lockdown eases
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Hi Julian, I was interested in your Antibody Test, and results. Is there another way, one can order such a test? as I don’t do online financial transactions, but would like to take the test, as it seems to have some value to us.
It sounds a little complicated, when you describe having to translate your lab results, into an Antibodies count. Perhaps you can suggest a simple way to do this. All the best Ron
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I too have ET and take hydrocarbons. I hugged my grandson today. Thoroughly fed up with shielding. I’m going on hoilday to get some sunshine.
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I think some sunshine is what we all need - whether here or abroad. Looks like it’s improving in the next couple of weeks - fingers crossed 
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Yes, @Nichola75 I could do with some warmth, sunshine and good sea air, I think.
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