I have just had confirmed that my treatment for Chronic lymphocytic leukaemia (CLL) will commence in October. My NHS consultant has given me the treatment options and has agreed that the best treatment for me is to combine Obinutuzunab with Ventoclax. I wonder if there is anyone who has experienced this treatment and is able to give me some feedback. Thankyou.
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Hi @Jharcus a great big welcome to our forum and I am glad that you have found us.
I hope others will be able to share their experiences.
Perhaps write down all you fears, questions and practicalities for your medical team
How are you feeling about starting treatment?
Please do let us know how you get on, we are here to support you.
Really look after yourself and I look forward to hearing more about you.
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Hi @Jharcus and welcome to the forum.
I’m sure there will be others who can share their experiences with you now and throughout your treatment.
How are you doing?
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Erica. Thankyou. I take a pragmatic view of my forthcoming treatment but I just want reassurance that I am getting the best treatment available. My diagnosis was in Feb this year having been aware of growing lymph nodes since October 23. My energy decline has been rapid over 12 months. In Sept 23 I could cycle 50 miles per day and now (Sep 24) I struggle to walk up hill. My full blood count reflects this. I cannot find evidence in forum messages from anyone who has experienced this treatment. I wonder if I am looking in the right place? Currently the only reference I have is from the Blood Cancer booklet and the Chronic lymphocytic leukaemia (CLL) support guide. Are you able to help? Thankyou. John
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Hi @Jharcus
Welcome to our forum, and I’m also glad you have found us and felt able to comment.
Hopefully you will get replies from others who have been through this treatment - I have tagged your post to make it easier to find. We do have previous threads related to Chronic lymphocytic leukaemia (CLL) and this treatment on the forum, so do take a look around. You can use the search bar at the top, or click on the tags and categories on the homepage to find more related posts.
Posts related to Chronic lymphocytic leukaemia (CLL) are here: Latest cll topics - Blood Cancer UK Online Community Forum and there is one referring to this treatment here: I’m starting treatment of Venetoclax and Obinutuzumab for CLL and would like to hear of others’ experiences - Going through treatment - Blood Cancer UK Online Community Forum It is important to mention that everyone’s experience will be different as we are all unique, so do bear this in mind when reading through other threads. We would always encourage you to ask any specific questions that come up to your hospital team too as they know your individual case.
You mention having a booklet, so you might have already seen our information on Chronic lymphocytic leukaemia (CLL), but it is here if not: Treatment options for CLL | Blood Cancer UK There is a section about treatments here, which mentions the treatment you are going to have: Treatment options for CLL | Blood Cancer UK
You also mention fatigue, so I’m just popping this here too in case there is anything helpful in there: Blood cancer and fatigue | Blood Cancer UK
Take good care of yourself.
Kind regards,
Ali
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Hi @Jharcus I am the most untechy person I know but luckily @Ali_BloodCancerUK has jumped in to help you out!!!
I hope someone will be able to help you out with their experiences.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago and I am fitter now than I have ever been in my life.
I am a great walker and Pilates girl.
I started from only being able to walk a very short way and not being able to get up off the floor at diagnosis to being able to walk several miles now.
It has taken time and there have been set backs and it is not easy and it has been getting to know me and my fatigue and how I can manage it.
Give yourself time and be kind to yourself and please do keep posting
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