Family member with CLL

Hi there,

My Dad who is 81 was diagnosed with Chronic lymphocytic leukaemia (CLL). He didn’t have any issues as such, it was picked up as part of a scan he was having for something else.

He was feeling in good health and was advised that he could go onto a chemo tablet to help enhance the quality of his life. He is just on the tablet for now.

His bloods have improved recently but our family are noticing that whenever he gets poorly whether a cold, cough or any minor ailment he seems so poorly and not at all himself.

We just wanted to know if this is other people’s experience?

It’s all new to us and concerning of course, we aren’t sure if these chemo tablets are best? The side effects and stress of appointments, illness etc almost seems to be counter intuitive and he seems more poorly than he did before….

Again would really appreciate any input from people on their experience and if people have come off the tablets?

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Hi @AlexD,
Thanks for your message & welcome to the forum! I do hope you find this a really good source of information & peer to peer support. I do hope your dad is doing okay?
As our webpage highlights- Everyone reacts differently to treatment, so two people having the same treatment may not have the same side effects, and some people don’t have any at all. But if you do notice a change in how you’re feeling, tell your hospital team straight away.
However what we do know is that people with Chronic lymphocytic leukaemia (CLL) are at higher risk of infection from germs like viruses, bacteria and fungus. Treatment can also increase the risk of infection, so it’s very important to make sure you know what the symptoms of an infection are, and who to report to if you feel unwell in any way.
We appreciate this is very much like entering a new world and it can be a lot to take on board- so never hesitate to call our support line to talk anything through- Blood cancer information and support by phone and email | Blood Cancer UK

Best Wishes, Lauran

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Hi @AlexD, a great big welcome to our forum and thanks so much for posting.
@BCUK_SupportTeam Lauran has given you a brilliant reply.
I expect you and your dad must be in shock.
I am 72 yrs old and I was diagnosed with Chronic lymphocytic leukaemia (CLL) 18 yrs ago when I was having tests for something gynae.
The symptoms you describe are so familiar to me and I have not had any treatment.
Yes, I am very prone to infections and know to catch them early.
My main symptom is fatigue though and as I have got to know myself over the years I learn to manage it. I don’t do evenings and I can be prone to a short nap.
I think your dad’s dilemma is something for him to discuss with his medical team and at the end of the dad your dad has to weigh up what is best for him.
It might help him to write down all his symptoms.
Your dad doesn’t have to make a decision there and then let him take his time.
If he would like your help all the better.
Being a carer is the hardest job in the world and I can tell how caring you are, you are an unsung hero, please keep posting on here, we are here for both of you an if you would like to speak to someone the Blood Cancer UK support line is also there for you.
Look after yourselves, be kind to yourselves and spoil yourselves and keep honestly communicating.
I look forward to hearing more about you

Hi @AlexD and welcome to the forum. I can’t add any more practical advice as @Erica and @BCUK_SupportTeam have given you all off the information you need.
I have a different blood cancer. However, what we can all offer on here is a place for you to share, ask questions and get support.
Being a family member is so tough when something such as this happens. It’s great that your dad has you all looking out for him and asking the relevant and important questions.
Please keep us updated on how your dad (and you) are doing :blush:

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