My partner has CLL. After both doses of AZ vaccine, private antibody tests came back negative. In his appt with the Marsden, he raised this and was offered an antibody test which again came back negative. He asked what to do next and was given no answer at all. If this is the response from one of the leading cancer hospitals, what hope is there? We have been living apart due to my high risk job and he hasn’t hugged his teenage children for 18 months. His job is also at risk as he cannot attend high risk large scale events. I’m worried about the effect all this is having on him (and his children and me!).
We don’t know where to turn next. Surely the next step is to give more doses or a different vaccine? But the Government don’t care and the Marsden doctors don’t have a plan.
Situation: still hopeless
Hi @Roopy99, join the club. Blood Cancer UK and other similar charities are campaigning on all the issues you raise and they have funded research projects into this.
The University of Birmingham is actually researching into CLL on these issues.
Your consultant probably did not have an answer either we are very much into unknown territory here and very early days.
There is a big campaign lobbying MP’s about employment issues at the moment.
I think so many of us have been shielding and not having close contact with loved ones and it has been so long that there is a feeling of never ending and hopelessness.
As many have said as the country opens up our lives contract.
Sorry no answers or magic wand.
Keep posting we are all supporting each other on our forum.
It is difficult and we are being forgotten. As some one who didn’t always grow up in a democracy it is easier for me as I cant believe that humanity is universally benign so I accept that a significant minority do not care, will cast off their masks (if they were wearing them in the first place) and put us at risk if we venture out but there are also good people who want to be careful and helpful thank goodness. The people we need to target though are the vast majority neither good nor bad who just don’t think about others unless reminded into which category I place most MPs so all we can do is make a noise remember they only care about votes but they are not always logical so a few people making a lot of noise can be as effective as a lot of people making a little noise
Gosh @Ismo those are wise words ‘a few people making a lot of noise can be as effective as a lot of people making a little noise’ and as I said in another response to you I believe that Blood cancer UK are collaborating with some other similar charities to campaign for us and you might have seen that they have had some really good media coverage recently and they are also lobbying government.
It is so difficult that we cannot control others actions isn’t it.
The general population are listening to the government and we are listening to the medical experts.
We are in the same situation with CLL but happilly hubby is in remission. Unfortunately he had his 1st jab whilst he was still taking the meds, the 2nd shortly after the meds were stopped. We did an immunity test - more as a confidence booster - only to find that he too has no immunity. We took this concern to his case nurse. After a few calls and enquiries, she told us that although the vaccine hadn’t worked, in people with blood cancers the T and B cells would probably ‘kick in’ giving some protection. His blood count is good at the moment which is great but instead of enjoying his time in remission, he is still taking precautions. Sooo frustrating.
Hi @Roopy99, I am not discrediting the antibody test your partner had or any antibody test anyone else has had. I asked for an antibody test and the response I received from my haematology consultant was that there are several areas an antibody test needs to test and antibody tests only test one area, so different test would need to be undertaken. This is how I understood it. He also likened it to like looking for a needle in a haystack. It is worrying I understand and even more so with the restrictions lifting. I am of course happy to be guided or corrected as I’m no medical expert.
Good luck with his treatment.
Hi @Roopy99 I am lucky as retired so don’t have to go to work. However I also don’t have any antibodies. I was surprised, as it is over a year since I stopped rituximab maintenance for follicular lymphoma. My consultant said (before I asked) that the NHS will not offer antibody tests, so I had a private test done by an NHS lab (!). My consultant recommended that I didn’t have the test. I prefer to know if there is a problem so that I can deal with it. It is known that patients with low antibodies can be helped by a replacement antibody medicine (RECOVERY trial). We may still have T cell immunity, but that’s not as good as those who have T cell and antibodies as well.
Hi @Billy1mate, your consultant seems to have put it in a nut shell !!!
Again @mrbio yes, I think your consultant says it all.
It’s so understandable you’re feeling like this. Please be assured that we are working hard to find answers for the blood cancer community through our Vaccine Research Collaborative. You may want to read through this webpage about much of the research going on into the efficacy of the vaccine for people with blood cancer - https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/covid-vaccine-blood-cancer/covid-vaccine-efficacy-blood-cancer/
Also, you may also want to sign up to our Q&A on the latest research on vaccine effectiveness. Do feel free to submit your question for the panel if you do sign up - Ask the Experts - Latest Developments on Vaccine Effectiveness.
This blog talks about alternative methods that might protect people with blood cancer from covid, that are being researched at the moment - What else can we use to protect people with blood cancer from covid? | Blood Cancer UK
There’s also some government funded research going on to understand which vaccines against COVID-19 are most effective as a booster vaccination. We will make sure we update our Covid Vaccine and Blood Cancer pages with information we learn around this.
(The JCVI has released its interim advice on the potential COVID-19 booster vaccine programme for winter 2021: JCVI interim advice: potential COVID-19 booster vaccine programme winter 2021 to 2022 - GOV.UK
This page might be helpful as it talks through coping with uncertainty during this uncertain time, and also talks about factors to think about when thinking about risk.
Sorry about the huge amount of links here - If any of you would like to talk any of this through, we are only a phone call or an email away so please don’t hesitate to give us a shout!
I fully understand I am also under the Marsden for CLL
Have not had the jab as I am medication sensitive also have ME which reacts to medication. Keep hearing of people who have got Covid after being jabbed and those in our group who do not seem to respond to vaccine
Iam still shielding and going for local walks. Feel like human life does not count now and in London some people’s attitude to wearing masks have been unbelievable.
There are some good charities out there including this one which has been amazing and has just made a wonderful video. One day at a time. Live your life in the best way you can.
There is also the trials they are doing at UCH called Provent. They are looking into an antibody injection for people with conditions like blood cancer who the vaccine might not work for. Let’s hope these trials are successful.
One day at a time we will get there
Yes, @Sandra one day at a time we will get there, together.
We are all grateful for the help that blood cancer U.K. offer and for the research being done. I’ve put myself more or less back in shielding, it’s tough, I miss my grandchildren so much, they are growing up fast and I feel like I’m missing it all. I feel the government have abandoned us really, they don’t know the answers anymore than we do so we just have to make our own decisions. It seems like life as we knew it is over for me, it’s very depressing.
Oh, @Kerrie I am so glad you have found us and felt able to post so honestly.
As you see you share the feelings of many of us.
It must be so hard for you missing your grandchildren and I bet they are growing up fast. Do you speak to them on the phone or see them via Zoom or such other modern invention?
I have taken to sending friends little cards just saying I miss you or sending you virtual hugs etc is a good way of keeping in touch, I love receiving post myself.
What I have heard from friends who have gone back out into society is that they have soon gone back to a sort of ‘normal’ pre Covid but with masks.
I keep this thought in my mind for when I step a toe back into life.
You say you feel depressed, well for the time being we are your new family as we go through these times together and 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 firstname.lastname@example.org.
If you feel you might benefit from some counselling it might be worth seeing your GP or privately, the BACP (British Association of Counselling and Psychotherapy) is one starting point.
I always find the nights are worst and it is a comfort to know that the Samaritans are always on the end of the phone 116 123.
Do you have any support from family and friends, I have found that such a help.
I really look forward to hearing more about you.
I completely understand the feelings everyone is expressing. My niece is due to give birth this week but I doubt I’ll be travelling to Birmingham as her mom and dad are both back in chemo and I don’t think they’ll want guests right now. It sounds very bleak but one’s got to have some hope. The work being done on our behalf will come good in the end and brighter days will happen.
This may be of interest to anybody who had their covid jabs while immunosuppressed due to chemo or rituximab. I’ve just spoken to my haematologist and he told me that another of his patients is in the same situation as me, was severely immunocompromised when they had their covid jabs and had no antibody response, but are now in complete remission with a recovering immune system. He wrote to the persons GP advising a full/double re-vaccination for covid, and the GP was able to arrange this. I was under the impression that the only way to get a covid jab in the UK was to be invited by the government, but it seems that’s no longer the case.
Thank you @waggy very interesting how are you feeling and doing?
Look after yourself