I have been offered 2 treatments ( no decision made yet )
Ibrutinib & venetoclax
Rituximab & venetoclax
Can anyone enlighten me on the effects and the effectiveness of these treatments please.
I have been offered 2 treatments ( no decision made yet )
Hi @StephenH and welcome to the forum.
I have follicular lymphoma and wondered what your diagnosis was?
How are you keeping at the moment?
I would say the effects and effectiveness of the treatments depend on the individual. Others may be able to share their experiences but I would say that your medical team were the best to talk about the effectiveness. Have you had the opportunity to talk through both options with your medical team? I have copied in the @bloodcanceruk_nurses who will be much more qualified to respond to your questions.
I look forward to learning more about you and I’m sure you will find the forum a supportive place to share with others who understand
I have been treated for autoimmune haemolytic anemia for8 years and was diagnosed with Chronic lymphocytic leukaemia (CLL) 4 ago. I currently take tablets to suppress my immune system but soon will be treated for the Chronic lymphocytic leukaemia (CLL).
I am concerned about the side effects that I may have and how often I will need treatments
It must be a worry when new treatments start. I know I read up on everything and always worry about side effects.
Hopefully the @BloodCancerUK_Nurses will be able to advise.
Hi @StephenH a great big welcome you are now part of our forum family.
I see you have Chronic lymphocytic leukaemia (CLL), I do too, but I have always been on watch and wait (active monitoring).
I was diagnosed 19 yrs ago.
You demonstrate so clearly that we are all very unique people with different medical histories, medications, family histories, etc.
Therefore your questions are best asked of your medical team as any treatment plan will be tailored to you.
Your questions are so sensible and valid so please do ask them.
Please do let us know how you get on and keep posting.
Take lots of care of yourself
How are you today? It’s understandable to be feeling unsure about treatment decisions. It can be a lot to take on board.
As others have mentioned please don’t hesitate to call our helpline and we can talk through any of your concerns- 0808 2080 888.
It is of course important that you relay your questions & concerns to your haematology team as they will be best placed to advise you on the basis of your clinical background and individual circumstances.
In case it is helpful in any way our webpage here talks about treatment regimes for Chronic lymphocytic leukaemia (CLL)- Chronic lymphocytic leukaemia (CLL) treatment types | Blood Cancer UK.
Take Care, Lauran
I have found that some patients prefer to be told exactly what treatment they are having, but some like to have a choice. When some patient’s, like yourself, are given a choice it can feel like a huge burden to them, and can be so worrying because they don’t know the statistics, the side effects, etc of the different drugs. This is an area of expertise that most patients are unfamiliar with; blood counts, how the drugs work, disease biology etc, so don’t feel they should be the one to make the decision that could impact their future health.
If it is any help or reassurance, the Consultant will have offered the two regimes to you as they will both be beneficial for your Chronic lymphocytic leukaemia (CLL), with similar data on success for Chronic lymphocytic leukaemia (CLL). Often the only difference is the way they are administered and also the length of time you take the treatment for, which is why they have given you the option to suit your personal circumstance.
Ibrutinib and Venetoclax are tablets, so taken at home, meaning less trips to the hospital. I am not sure how long you take each tablet for, it may be 2 years or one year, best to ask your Consultant.
Rituximab is a drug that starts off as an intravenous treatment, but may change to an injection after a few doses. This might mean monthly trips to a day unit/chemo suite, as well as the daily tablets of Venetoclax. Again, do ask your Consultant if the recommendations are for one year, two or more. This may help you decide which regime is best for you.
Before you start any treatment, you should have the time and opportunity to talk through the side effects or any concerns you have, with a nurse or the Doctor. I used to have a ‘Pre-chemo clinic’ where all patients starting new treatment would sit with me for an hour to go through the ‘do’s and dont’s’ around chemo and their specific treatment.
You will have to sign a consent form for the treatment, and in the consent form it will state you should have been given written and verbal information about the drugs, any possible side effects explained and the opportunity to ask any questions.
You will be given a contact number for either a specialist nurse or a 24 hour Chemotherapy helpline (each hospital is different), so if you ever did have any side effects you could ring for advice.
In my experience, patients tolerate both Ibrutinib and Rituximab very well, very few side effects at all, but the Venetoclax can cause other blood counts to drop. This doesn’t happen to everyone, but is known about, so the Haematologist will monitor you very closely in the first few weeks (blood tests twice a day for the first few days of starting, then weekly, but this will be told to you once your treatment is decided) and discuss your counts with you.
Please do call our support line if talking any of this through would be helpful prior to your next appointment.
Take care, Heidi.
Thank you for your email.
It is very helpful, and has given me a good idea of what I need to ask when I see my consultant next week.
Many thanks , Steve
Hi @StephenH I agree with what at @Nichola75 says I think your diagnosis can determine how the treatments will affect you. Like Nicola I also have follicular lymphoma. I have experienced rituximbab but in combination with rchop and then as maintence on it own for two years . As a stand alone drug I would say I had little if any side effects from it apart having to go in for an injection every eight weeks and it having side effects of immunosuppression during the pandemic! Good luck with your treatment let us know how you are getting on.