This is bound to be an old chestnut but I’m a year into Chronic lymphocytic leukaemia (CLL) W&W and have just caught a cold. I have appointments for a spring booster Covid jab and for a 3-monthly consultation with my Chronic lymphocytic leukaemia (CLL) haematologist both on this coming Wednesday, i.e. in 4 days time.
How worried in general should I be about having a cold? Can early stage Chronic lymphocytic leukaemia (CLL) patients normally fight it off (I’m 79!)? Or is it likely to linger or deteriorate into something more serious?
If I still have mild cold symptoms on Wednesday, should I postpone both appointments and perhaps ask to talk to the haematologist by phone or zoom? He should have my latest blood data as the samples were taken last week, before my wife brought the cold virus into the house.
Any advice very welcome.
Hi @Murdoch I have Chronic lymphocytic leukaemia (CLL) and I had my vaccine last week and I have to say the pharmacist was very thorough and did ask me if I was well on the day and check that I was eligible for the booster, I am 73yrs old and have had Chronic lymphocytic leukaemia (CLL) for 19 yrs on watch and wait.
I had my haematologists letter of proof that I have Chronic lymphocytic leukaemia (CLL) and my NHS appointment letter with ref number (emailed to me after after I booked the appointment, it was also on my mobile phone…
Perhaps it is worth checking your questions out with your specialist nurse, consultant or 111.
I find that any colds/flu do last and are worse than with my husband and I need to catch infections quickly and see the GP nurse or GP so they do not really take hold.
The best advice is to look after yourself and your well being.
Thanks, Erica. I’m definitely being kind to myself but, as you suggest, I will try to contact some medical advisor. Difficult perhaps on this special long holiday weekend. Best wishes to you. You’re a hero being around to help on Coronation Day!
Hi @Murdoch, thank you for sharing and I’m sorry to hear you’re feeling poorly. How are you doing today? Erica has given you a helpful response and I agree it would be useful to speak with your team or GP, or certainly 111 if you need to. It may be worth having a look at any clinic letters you may have from your team, as often there are out-of-hours numbers available for times like this. Your GP surgery may also have information about out-of-hours contacts, for example on their website or if you dial their regular number.
Normally if you’re unwell on the day of a vaccination, they would advise delaying it until you’re feeling better, however certainly good to check in with those looking after your care.
Take care and I do hope you start to feel better soon. Our Support Team are here if you want to talk things over (0808 2080 888).
Many thanks, Tanya. All very helpful advice again. Unfortunately my wife has just tested positive for Covid. So far, though I still have cold-like symptoms, my Covid test result is still negative but I suspect that this will change soon, in which case I’ll obviously miss the jab appointment but try to talk to the haematologist remotely. My focus will also need to be on accessing anti-virals but, until I get a positive test result, I’ll just stay optimistic! If I do get a positive result, I hope it will be once this long weekend holiday is over and the relevant medical folk are fully staffed again! I live in Scotland and I’m assuming that, in my 80th year with various co-morbidities, getting fast and effective treatment will be essential and easy to organise! Google suggests that 30% of folk with Chronic lymphocytic leukaemia (CLL) and Covid die. Surely not?
All the best and thanks again for being there to support.
I’m sorry your wife has tested positive, @Murdoch. I hope she’s not feeling too rotten. You might have seen this already, but just in case you need it, our website goes through the process should you test positive- Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK.
I’ll paste the process for Scotland here, for ease:
If it’s positive, you’ll need to log your positive test online or by calling 119.
You should then report your positive covid result to your Health Board. You can find contact numbers for each Health Board here. Whoever you speak to, tell them you are immunosuppressed, with a positive covid test, and that you think you are eligible for treatment. You could also get advice by calling 111, your hospital team or your GP. If you have any problems, guide them to this link:
Statistics can be quite alarming to read- it’s always worth exercising a bit of caution with Dr. Google, as we’re all individuals, and Dr. Google doesn’t necessarily account for that. Take good care of yourself, and do keep us updated- wishing your wife a speedy recovery and I do hope you’re okay yourself.
Many thanks Tanya. Very useful info which I’ll get onto immediately if I turn positive.
Just checking in to see how things are today?
I am here until 1pm if you do need any support.
Thanks Gemma. Pretty much just the same as yesterday - coughing and running nose, with an ability to sleep for Britain, but still testing negative while my wife, with the same symptoms, keeps testing positive. But overall we’re all doing relatively OK and my negative testing wins me the prize of doing the dogwalking! Will burst into further action tomorrow postponing Covid jabs and my haematology. I feel sure I’ll test positive soon as my wife appears to have brought the virus in from a restaurant rendezvous with friends last Wednesday and her symptoms started a few days before mine. Can’t really enquire about anti-virals until testing positive. My main concern is that, apart from having Chronic lymphocytic leukaemia (CLL), I’ve always been vulnerable to chest infections, whooping cough as a child, pneumonia and pleurisy as an adult. I’m also on medication for AF so basically a bit of a wreck but I do love clinging to this old wreckage!
Thanks for asking and sorry to miss your deadline. Was asleep!
Hi @Murdoch sorry you are still feeling so rough.
At Christmas 6 of us met up. 2 of us in their eighties got Covid symptoms, tested negative and recovered OK. 2 of us in their 50’s, one had no symptoms and was fine and the other tested positive for Covid and got over it in a couple of weeks. My husband and I, in our 70’s he got symptom and got over them and I got symptoms and tested negative all the way through, but still feel 1 degree under. I have Chronic lymphocytic leukaemia (CLL). I am on medication for an irregular heart beat.
Personally I would say that perhaps the dog walking will do you good, when I go for my walks I try and do deep breathing exercises to keep expanding my lungs.
If you have any concerns perhaps contact your GP or medical team for peace of mind.
Please keep posting and take lots of care of yourselves
The variability that you describe is really interesting. What you’re saying, I think, is that test results aren’t everything and that the important parameter is how you feel. Plus your experience gives me hope. Many thanks, Erica. Let’s see what tomorrow brings! Great having you around for advice!
I admire your resilience and determination Mudoch, you are an inspiration to us all, I hope thigs get better for you and your wife.
All the very best. Ron
Many thanks, Ron.
Tested positive this morning and currently waiting to find out whether I qualify for treatment. Don’t feel too bad so that’s good. Best wishes to you.
Oh @Murdoch I know that you were expecting the Covid positive result, but I expect it really hit you, it would me to actually see it.
Let us know how you are both doing and look after yourselves.
Who is taking your dog for a walk today???
Be kind to yourselves.
My wife is walking the dog this morning, Erica. We live so far out in the middle of nowhere that there’s no chance of her passing it on. We’ve been busy this morning - followed all the procedures that Tanya copied and pasted above - so have had a phone interview with a health board doc who prescribed anti-virals which should arrive by courier any minute. Hence why I’m not walking the dog! Also have rescheduled my Covid jab until late June and have arranged that tomorrow’s planned consultation with the haematologist will be conducted by phone rather than in person.
Don’t feel any worse than previous days so that’s good. In a way, I was pleased to test positive this morning as it seemed obvious lately that I had it so it was a form of justification! Also convinced my wife that I wasn’t just inventing a man-flu type of thing! But, best of all, it probably was much better to get my first positive result on the first day that everyone in the NHS is back at work. So we had everything organised and rescheduled by 9am! Thanks for keeping in touch and best wishes.
Hi @Murdoch, thank you for taking the time to update us. It sounds as though you’ve been feeling so poorly with this, I am so glad you’ve been able to have the antivirals sent over to you - I do hope they arrive soon. Let us know how you get on if you feel up to it. Wishing you lots of rest, and a smooth recovery.
Thanks Tanya. Your practical advice was spot-on. Have already started the antivirals. Good old NHS and good old blood cancer forum!
Wow @Murdoch there is you with Covid and feeling rough and you have worn me out with what you have achieved this morning and you have proved the Covid procedure works.
Really look after yourselves.
Hi Murdoch, I appreciate your concerns regarding catching colds, especially at our age, and especially having Chronic lymphocytic leukaemia (CLL). I have had an ongoing cough and sweats for 6 months, and am fighting a 4 week bout currently.
My GP tells me that it is a Viral Infection as opposed to a bacterial Infection, which means that Anti Biotics are not effective. It appears we just have to wait it out, keep warm, lots liquids, and Honey/lemon gargles and drinks. I am also waiting the results of a recent X Ray which may put my mind at rest, or not. either way I will be glad to get to the bottom of this. I hope this helps, and that you recover well, stay positive, and warm. All the best Ron
I’m told they can last 6-8 weeks. It is worth checking regularly with your GP, as it’s important that we keep a careful watch on Colds, and indeed any infection. I also take a regular Lateral Flow text, and stay away from people as much as is practical. i too have cancelled my 6th Covid vaccine, and am told not to have it till the cold has cleared.
Thanks, Ron. That’s a sobering message! Really sorry to hear that you’ve been poorly for so long. I had hoped to be clear sooner than your experience. It’s the uncertainty that’s so worrying, isn’t it? At our age, we’re lucky to have survived for so long but inevitably our resistance and recovery mechanisms are a bit knackered. Your advice re drinking lots of fluids etc and of course avoiding big crowds is good. I do hope you can get rid of this long-term viral infection. Best wishes, Murdoch