Hello all! We are going to put on a support focussed Ask the Experts session over Facebook Live on Wednesday 30th November. This will be hosted by two of our Nurse Advisors, @LauranBloodCancerUK and @GemmaBloodCancerUK
We plan to cover themes around living well and managing risk over the winter period, particularly with respect to covid-19…
• Discussions with loved ones about risk - What family and friends can do to support people with blood cancer?
• Managing risk during party season and festivities – mixing – making decisions
• Being newly diagnosed and managing infection risk
• Coping during feelings of loneliness or isolation
Concerns about cost of living over winter
More info to follow, but please use this thread to let us know if there is anything particular you want us to discuss, and any questions you’d like answered, and we will do our best to answer as much as possible!
Please note you do not need to have a Facebook account to join this event.
Let us know your questions for the panel.
I think the hardest part is for each of us to make the risk assessment of how best to live in a Covid 19 environment (yes case numbers are now going down but they are still relatively high and the pandemic isn’t over). My consultant is fantastic at managing lymphoma but “be careful” is his only advice re Covid. Some people feel they want to live life to the max after treatment (go abroad, go into restaurants , theatres etc) while others continue to fully shield and others like me do online shopping, see friends at a distance outside and go for walks in quieter places.
I had zero antibodies after the first 4 jabs (as too soon after my RBenda treatment finished in Jan 2021 ) but I have since made some antibodies with jabs 5 &6. It was much easier to risk assess when I knew I had zero antibodies than knowing what to do now.
It would be useful to get any updates on the following
- is it still the case that we don’t know what level Ie quantity of antibodies is needed to optimise fighting covid ?
- I seem to recall a UCL study from a while back that looked at the quality of antibodies produced by immunocompromised (which was that they were less effective), any more recent studies re quality?
- from the PROSECO vaccine efficacy study (I was a participant), I know that those with indolent B cell lymphoma were at greater risk, not just during and in the months post treatment, but also that the underlying lymphoma itself made us higher risk for covid. (Also that bendamustine treatment impacts your T cell immunity for at least 3 years). Any updates to that?
- for people who have made some antibodies is it still worth considering Evusheld as well? In the USA they do seem to be suggesting it in such cases. I know my consultant won’t have an opinion on this aspect. Wish we had easier access to immunologist advice on this (I think it’s shocking the Govt won’t currently fund Evusheld so people have to go private to get it at the moment)
- I’m keen to know what general infection advice for people post treatment would have been pre pandemic (was it avoid large crowds , people with colds etc?), so I can then add my own covid risk assessment to that. My white blood cell counts, neutrophils etc are still below the bottom end of the normal range. (I will ask my consultant this question next time I see him, current advice is all complicated by our Covid world , hard to know/remember what advice would have been pre pandemic)
My own situation is complicated by the fact that I also have chronic kidney disease so I would not be eligible for Paxlovid antivirals (and it seems Sotrovimab antibody treatment is struggling against emerging variants) , and covid is particularly tough on kidneys so that plays a lot into my own Covid risk assessment as I don’t want to fast track being tipped into starting dialysis.
Thanks for any updates on the above
Brilliant idea! Thank you for covering this subject
As someone who has recently been diagnosed with Chronic lymphocytic leukaemia (CLL) and also has Long Covid, the winter feels challenging.
I would appreciate understanding what I should be doing to look after myself and if I do catch a cold how should I manage it…feel a bit lost in this new world
Oh @Johanna1 I bet you feel a bit lost in this new world, the shock, fear and unknown is so scary.
As a non-medical person with Chronic lymphocytic leukaemia (CLL) I just deal with a cold exactly the same as I did before my diagnosis and make sure I drink more, in the winter it is more hot drinks for me.
I wear lots of layers of clothes.
Personally I find fresh air and reasonable exercise, well wrapped up, also helps me.
Give yourself time to come to terms with your diagnosis and please keep posting.
We think of so many things were we are initially diagnosed. Hopefully this will help you to keep safe and feel reassured
This sounds really useful! Unfortunately I don’t have a Facebook account. Will you be sharing it on any other platforms/recording it?
The hardest thing for me, no doubt like many others, is not feeling safe to ‘seize the day’ which is the attitude I originally took to my Myeloma diagnosis before the pandemic came along. Now its more about trying to make the best out of what seems relatively safe and value judgements for special occasions.
Cost of living is big too, especially the limits on putting the heating on. Due to a previous lung infection, I have been advised against breathing in wood smoke but recently we discovered coffee logs (made with recycled coffee grounds) so we had the chimney swept and have started using our dormant wood burner for a weekend treat. The coffee logs don’t appear to make any smoke or smell and they leave very little ash behind them when it comes to cleaning the grate. I think they’re really great (sorry!) and a lit log-burner is a cheery sight.
Also I totally agree with @CaroleCW that the whole Evusheld debacle is shocking. We were so quick off the mark with the vaccines in the UK and now (I think) we’re the only G7 country not to be using it. Most of all and first of all for the people with no antibodies, but wouldn’t it be nice to know, as you suggest, if it could help those of us who have made some antibodies but not enough?
I was diagnosed in 2012 and the advice then was certainly to avoid crowded places and people with colds. I worked in a school, so that was tricky. I had a no-handshake policy with parents (which wasn’t easy - some were more understanding than others), used a lot of hand gel and hand-washing and while I was on CDT treatment and my job was modified to allow me to avoid crowded places such as the dining room and assembly hall. Once I returned after my transplant, it was pretty much business as usual but I did suffer several bouts of pneumonia and one particularly bad bout of pneumococcal pneumonia, after which I took early retirement. So I suppose there were some similarities, but I didn’t feel the pressure that I feel now re catching Covid and enjoyed travelling and socialising, albeit carefully.
Hi @Coastgirl thank you for your comments! Don’t worry, you won’t need a Facebook account to watch it live, you’ll only need the link, which I’ll share shortly It’s be recorded anyway and put on YouTube, so I’ll be sure to share the recording on here afterwards too.
Thank you @Alice_BloodCancerUK . I’ll look out for the link
One of the issues I am trying to grapple with during winter time (or any other time in fact) is in relation to overseas travel and access to covid antiviral treatments. My current understanding is that the antiviral drug Paxlovid or indeed any other covid treatment cannot be purchased/prescribed in advanced as an assessment is required at point of contracting covid before a definitive decision of best treatment if any is agreed. So my question is, if I was abroad on holiday during the more difficult winter time and caught covid how would I get access to the antiviral treatment bearing in mind that I would need to isolate and stay indoors at the place I was staying or the designated isolation accommodation? I would of course have appropriate travel insurance so would it be the case that I would need to contact the travel insurance company and get them to organise an medical assessment and the delivery of the antiviral to me in my isolation accommodation?
Hi all, just a reminder of this live Facebook event this evening.
You don’t need a Facebook account to watch it. It’ll be streamed live on our Facebook page - (20+) Blood Cancer UK | London | Facebook
Question(s) for tonight from me:
My concern (and I know of many others too) is the seemingly sudden change in attitude towards Covid from some of our clinicians and healthcare staff and the lack of masking and other mitigations. The answer to any concerns about lack of mitigations seems to be ‘antivirals’, however, I am concerned that NICE is reviewing and may restrict these too in future. In addition, it’s not always easy to get hold of them within the time frame. I’d like to know whether BCUK is able to represent our concerns about the lack of basic infection control mitigations (especially in crowded areas like A&E) to organisations like the British Society for Haematology? Additionally, in relation to hospital and GPs whether blood cancer patients and other severely immunosuppressed people could be given:
specific designated areas to wait in hospitals and GP practices (e.g. my local hospital’s out of hours GP service has static football stadium chairs and I was wedged between two people, when there was a roped off area that I could have sat in)
Be able to expect that nurses, doctors and other healthcare staff wear a mask (instead of having to ask and not necessarily receiving the reply we hope for)
Be able to use hospital park and ride buses without worrying that the patients and driver are unmasked (the hospital that I go to for my haematology appointments recommends that people use this service as there isn’t enough parking).
I guess what I’m saying is that blood cancer patients have different risks to healthy people and so the mitigations need to be tailored for their needs.
My question really is about how to support rising anxiety in family member with Acute Myeloid Leukaemia. My mother in law has some very unusual thoughts about when and how she can see us due to risk of infection
The link to watching on Facebook does not seem to be working!!!
There were technical difficulties tonight so we have recorded the session and it will be posted as a link for you to access. Hope you find it of interest