I'm starting treatment of Venetoclax and Obinutuzumab for CLL and would like to hear of others' experiences

Dear Forum Members, I am about to embark on treatment for my Chronic lymphocytic leukaemia (CLL) (Venetoclax and Obinutuzumab) and I’d really appreciate hearing from anyone who has completed this treatment or is currently undergoing it.
I have full trust in the team at Royal Shrewsbury Hospital and so feel very calm and positive about it, but I’d like to understand what I might face over the next 12 months. Thank you!

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Hi @SpaceAngel, thank you for sharing. It’s good to hear you’re feeling calm and positive ahead of your treatment. I’m sure others on here will be supportive and share their own experiences, but I just thought I’d share our webpages on CLL treatments, in case it’s useful at all. Do also keep our support line in mind- you’d be very welcome to give us a call at any stage of your treatment if you’d like to talk things through (Blood Cancer UK- Support for you). Best wishes, Tanya.

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Hi @SpaceAngel I hope that someone will be able to help you but perhaps also ask you medical team, no question is a silly one, ask fears, emotional, physical, medical and practical questions, I like to write mine down first, otherwise my mind goes blank.
I think having trust in your medical team is so important and certainly makes me a lot calmer and more positive.
We will be here for you so you can say how it really is for you.
Look after yourself and start writing lists.

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Hi @SpaceAngel. I’m sure there will be lots of people on here that can share their experiences with you. It’s so great that you have a good medical team around you. It makes such a difference to your journey. Please keep us posted on how you are doing :blush:

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Hi, I’m 6 months into this treatment. I’ve found I was very tired at the beginning and sometimes still have an afternoon nap! I’ve also have bouts of feeling nauseous usually around lunchtime but that usually passes quite quickly. The only major problem I’ve had has been an allergic reaction to the daily antibiotic this occurred after taking it for 3 months. I have type 2 diabetes which has been affected, I now take tablets for this. Good luck Lynne x

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Hi Lynne, thank you for replying. I haven’t been told about the daily antibiotics, but I do know that some nausea is to be expected. Could I ask about hair loss too? I was rather shocked when my CNS gave me the form for a wig fitting, as I thought most treatments these days didn’t cause this issue.
I hope that your journey continues without too much more negative impact. x

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No hair loss! I was understanding there wouldn’t be.

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Gosh @SpaceAngel that must have been such a shock when your CNS gave you a form for wig fitting.
It might have been better to have had a discussion about potential hair loss at an earlier stage, if this is something for you to expect.
Take time (excuse the pun) to get your head round this, it is a big thing, part of your identity, so visual etc.
Discuss it with your CNS as they will hopefully tell you what to expect and how they can help you through it.
I have just seen @Lynne57 response. Fingers crossed for you.
Please let us know what your CNS says.
Look after and be kind to yourself

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Hi @SpaceAngel I have been thinking about you, how are you doing now?
Look after yourself

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Hi Erica,

Thank you for asking how I am. In a nutshell, I am feeling positive, but also overwhelmed and anxious. My symptoms have got worse and I am severely neutropenic and fatigued, so most of the day is spent napping or in a nice, hot bubble bath for pain relief.

I live alone, so struggle at times, but try to reframe any negative thinking to cope.

Angela

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@SpaceAngel that mixture of emotions sound so natural to me. Anxiety can really take over the mind and is so overwhelming.
You must struggle being on your own, what a good idea to reframe those negative thoughts. A very, very trivial example of that is if I have to go out in the rain then I reframe it to think how many happy ducks there will be out there.
I am a great one for hot bubble baths to ease aches and pains.
Perhaps keep updating your medical team about how you are feeling and doing.
Don’t forget if you would like to speak to someone the Blood Cancer UK support line is there for you. Please use us to tell us how you really are, you are such a support to others and we are here for you.
Look after and be ever so kind to yourself xx

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