Treatment - Ibrutinib and Venetoclax

Hi Elaine I’m new here sorry to hear about your husband. My husband is also going to be on these 2 drugs for Small lymphocytic lymphoma (SLL)/Chronic lymphocytic leukaemia (CLL) starting in a couple of weeks. I am too interested to learn how these will affect him and his life. My husband is starting on Ibrutinib first for 3 months then will go on Venetoclax if all goes well for 15 months. The consultant told us these drugs are well tolerated so I am too interested to know how they will impact life/work with no or low immune system

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Hi @Wendyf welcome it is so difficult to answer your questions as everyone is so individual and probably your husbands consultant has given you the best answer they could.
Just try and take it a day at a time.
Just look after and be very kind to yourselves and keep posting as I look forward to hearing more about you.

@Wendyf Hi, I have been on ibutrinib for three month and next week starting venetoclax. You asked about how these may affect someone. For ibutrinib, initially my lower legs showed signed of purple spotting (purpura), and bruising easily. Not big purple bruises but under the skin, sore and tender lumps where I may have banged it or overused a muscle . It felt like a bruise but without purple redness. These usually totally cleared after a couple of days after I felt them. Apart from that, I carried on working in a new job I had just started but left the job due for various reasons not really because of my diagnosis and condition getting in the way. The job was not ‘helping me’. so I quit. Being on ibutrinib has been fine overall and if it were not for the daily taking of pills, I would not know there was anything amiss. My lymph glands seem to go down within hours/days which was great as they were all swollen. I do feel some fatigue from time to time but this could be just general tiredness I’m not sure if honest. I am trying to just carry on as normal.

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Hi @AlanW and a great big welcome and for sharing your experience.
I think a real benefit of our forum is that feeling of not being alone and the only one.
I find it so hard to work out what my fatigue is down to sometimes.
I look forward to hearing more about you and what you are doing now.
Please do keep posting and really look after yourself.