Hi all. My husband was diagnosed very recently with Chronic lymphocytic leukaemia (CLL). He is in Stage A, with lymphocytes at 8.9. So very early in the diagnosis. It was found out because he went to give plasma in June (for leukaemia sufferers, ironically!) and they could not use his blood. So that’s how he found out. The consultant has been amazing and stated that infection was to be taken seriously because of his immune system. My question is, has anyone had any bad infections, and what happens if your immune system can’t fight them off?
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Hi @Wp54Zba and welcome to the forum.
It’s such a worry isn’t it around infections and what to do.
It’s sounds like your husbands medical team are great which makes such a difference. Have they given you advice on recognising an infection and what to do if you are concerned?
I’m sure others will be able to share their experiences to.
How are you both coping with everything? Being diagnosed out of the blue must have been a lot to get your head around and to process X
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Hi @Wp54Zba a great big welcome to our forum.
I have had Chronic lymphocytic leukaemia (CLL) for 20 yrs, I was diagnosed at 53 yrs old and I am female.
Kidney and urine infections are my main ones and if I feel one coming on then I go to my GP and they check the sample that I have brought and put me on the most suitable antibiotics.
My GP surgery will give me a sample bottle if I need one.
So I think what I am saying is for your husband to be vigilant and act quickly if he feels he has an infection of any kind or anything else that does not clear up and appears infected.
Perhaps he might take advice from his specialist nurse, if he has one, or GP, about whether he needs any non live vaccinations.
Don’t worry, just be extra careful, I avoid crowded places or transport. Some people might wear masks in some situations, less now.
I take responsibility to inform all my consultants in differing specialisms of my Chronic lymphocytic leukaemia (CLL) as well as dentists, opticians etc. etc.
Just live your lives, my 70th birthday was my best ever.
We are here to support you too.
The Blood Cancer UK support line is there for you on 0808 2080 888 too.
Please do keep posting, I look forward to hearing more about you both
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Thankyou so much for replying.
The consultant said if he gets a cold or fluey symptoms not to leave it for more than a day. To see the doctor as he may need antibiotics sooner rather than later.
We both got Covid in May of this year and he recovered well from it, but knowing he has Chronic lymphocytic leukaemia (CLL) makes me worry more now about infection.
Thankyou for this forum. It is so reassuring.
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That’s good advice to follow. Sometimes we worry about calling the doctor to quickly but it’s so important for you.
I’m glad you have found value in the forum. We already always here to listen X
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Erica, Thankyou so much.
We are in the process of getting all his vaccinations done. Had the Covid one week, flu last week, the first shingles this Monday and the first pneumonia the following Monday.
That is a good idea too that you said to let the opticians and dentist know etc.
We are also buying a face mask for him that has a filter in it for crowded places.
I keep saying “we”, coz it’s as though both of us are going through this. I feel at the moment I wake up thinking about it and go to bed thinking about it.
It’s just the processing of it all. It’s the old saying. “Things like this only happen to someone else”.
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Hi
I was diagnosed with Chronic lymphocytic leukaemia (CLL) just over 2 years ago. I’m on a watch and wait. My lymphocytes were around 11 last time. I try to be as careful as I can to avoid infections which as a nurse isn’t easy so I have literally just retired. Things like not sitting next to strangers for long periods eg in the cinema I would book an end seat and sit next to my husband. But it’s impossible to have a life and avoid all infections so immunisation is key. I’ve had 9 covid jabs, get my flu jab every year , shingles jab and whatever else they want to throw at me 
I’ve got asthma too so winter weather leaves me prone to chest infections and despite being immunised I managed to catch covid in July from my husband before he tested positive and we isolated from each other. I have to say the NHS were brilliant. I immediately contacted my haematology department and spoke to one of the nurses. They referred me to a specialist service and a doctor rang me within an hour. He prescribed anti virals and forwarded the prescription to my pharmacy and I had them in my hands within 24 hours of testing positive. I came through it fine and was not as poorly as my husband. It’s a lot to take in when first diagnosed I understand that but I am determined to live my life to the full. I’ve been working with leukaemia uk a lot to raise awareness via press releases radio interviews etc which is giving me a sense of purpose. My husband will be captain of his local golf club in 2026 and his chosen charity will be leukaemia uk so we will be on a mission to raise money. I guess I’m trying to turn a negative into a positive. Everyone is different so take your time to get your head around things and you are in the right forum to get support. Hope this helps a little x
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Dear KayC
Thankyou so so much for your reply. I have logged everything you have said.
After he was diagnosed 3-weeks ago, he has had his flu, Covid and first Shingles. Next week is the first Pneumonia. So Thankyou for that advice.
Our doctors and haematology department are absolutely brilliant. We can’t fault them. I feel that is so important with a diagnosis like this because you feel you have so much support and don’t feel so alone in coping with this. Also this fantastic forum. It’s so understanding. I love what Erica puts a lot. “Be kind to yourself”.
Thankyou for listening and replying. I’m hoping as time goes on and from future experience, I can help and reassure people who have just been diagnosed. Thankyou KayC.
And Thanks everyone. Xx
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Hi @Wp54Zba
Welcome to the forum - I’m so glad you felt able to post and can can see you’ve already had excellent support.
I just wanted to also share our webpage on staying safe, which gives you the main things to look out for when it comes to infection: Blood cancer and staying safe | Blood Cancer UK
It sounds like you’re doing all the right things and that you have good support from your husband’s medical team too. It doesn’t always stop the worry, but this forum and our Support Services are here if you if you need it.
Take good care of yourself,
Ali
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Ali, Thankyou so much.
I will definitely read that article. Thankyou.
Big hugs. Xx
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