Hi Everyone - I have been remission for 10years but unfortunately have relapsed and need to have treatment again. I have been given two options. First is for Zanubrutinib long term and second is a combo of ibrutinib and ventoclax which would be for around 2 years.
Anyone got experience of these treatments and particularly interested to hear about tolerance levels and side effects. Thanks.
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Hi @BrotherGrim welcome to our forum.
We are all very unique and your consultant has given to these 2 options to consider.
Always difficult when they are completely unknown to you.
I hope that others will be able to share their experiences with you.
I have found it is worth writing down all my fears, questions and practicalities for my next appointments as I have found that my medical team knows me and my medical history best.
The Blood Cancer UK support line is there for you on 0808 2080 888
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses in case they can they be of help
Really look after yourself and please do keep posting
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Dear @BrotherGrim,
Thank you for reaching out to us. I am really sorry to hear the you have relapsed and need to have treatment again especially after 10 years. I am sure your consultant informed you but the treatment for Chronic lymphocytic leukaemia (CLL) has changed hugely over the past ten years and enables the patient to have more involvement in the treatment choices but for many, this can be a difficult decision to make.
Whilst I can not comment on which treatment will be better for you, what I found as a specialist nurse was that most of the time, it came down to individual patient preference. Do you want take a tablet every day or would you prefer to receive a course of treatment for a certain amount of time and then have time off treatment.
Zanubrutinib will be long term and side effects can include an increased risk of infection, fatigue, bruising and bleeding. It can also cause changes in your heart rhythm so your haematologist may recommend some cardiac tests before starting. It may take 2-3 months to see an effect on your Chronic lymphocytic leukaemia (CLL) and you will need to be monitored regularly with blood tests during this time. After this period, normally people tolerate treatment well with follow up every two to three months. I have enclosed some further information for you here that goes into further detail from Macmillian Cancer Support Zanubrutinib
Ventoclax and ibrutinib has more side effects because you are on a combination of treatments. The first 3 months you will receive Ibrutinib only and then the Venetoclax is added in gradually over a period of weeks. This means you will be seen and monitored closely with frequent blood tests and trips to the hospital. Side effects of this regime include increased risk of infection, nausea, fatigue, it can effect the kidneys and salts in the body ( this will be monitored) and can cause aching/ headaches. It can also effect how your heart works and again you may need extra monitoring of this. I have also enclosed some further information for you here from Macmillan which is explains why you need closer monitoring Venetoclax and Ibrutinib information
I hope you have found this information useful. If you wish to discuss further, we would be very happy to speak to you via our free support services line on 0808 2080 888.
Take care
Fiona (support services nurse)
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