Hi - has anyone had treatment for CLL with Venetoclax and Obinutuzumab? After 9 years on watch and wait I now need treatment. I’m very reluctant to have FCR chemotherapy treatment mid pandemic so haematologist recommended V + O (so hard to even spell them!), starting shortly.
This is such a new therapy that it’s hard to find out too much info (approved for Nice funding only late last year) and I’m very wary of Dr Google for obvious reasons.
I would love to hear from anyone who has any relevant experience, or even just general advice. It’s hard to approach treatment for the first time with little idea of what to expect. Thank you in advance!
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Hi @Est30 and welcome to the group. That’s a long time on watch and wait. How are you feeling at the moment now treatment has to start?
I can’t help I’m afraid - I’m still on watch and wait for lymphoma. However, I’m sure there is somebody on the forum who may be able to share their experiences.
I’m one of those google search people but really trying to lay off it as like you said, it’s of not benefit at times!
I think it’s great that your researching to make sure it’s the right treatment for you and it sounds like your team are really supportive?
I wonder if the support line might have more information. May be worth giving them a call? Blood cancer information and support by phone and email | Blood Cancer UK
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Hi @Est30 a great big welcome to our forum, you are in the right place and I am so glad you have found us.
I also have CLL but I am still on watch and wait.
@Nichola75 has given you good advice but as you say if this treatment was only approved by NICE late last year it might be difficult to find the experiences you are looking for.
As you say FCR chemotherapy is the most commonly used treatment.
I know you rightly say we are mid Covid, but is there any other reason that you did not want to go with FCR?
I have found that now might be the safest time to have treatment. I have found that my hospital has really got their act together and Covid and other services are well and truly separated. I have also found that my local buses are really socially distanced.
Trust me Mr Google is not my friend either.
Let’s hope someone can tell you their experiences with V + O or actually FCR, is there anyone out there please?
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Hi @Nichola75 thanks so much for responding. It’s good to share experiences even if we’re all in a slightly different boat. A good idea to speak to the support line, I may try that. Thank you! x
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Thanks @Erica for your comments. I have a young family so was wary of FCR as I understand it reduces your immunity more than V&O - it’s not possible for me to isolate from them and I just can’t keep them indoors for another 6 months, it’s too much. Also the risk of secondary cancers may be small but I’m only in my 40s and hope to live long (!) so want to avoid that if possible. But truthfully it’s v hard to judge what may be the best treatment. I might even be able to access Ibrutinib I am told for various reasons. My team are v supportive but these are big decisions.
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Hi @Est30, yes, they are very big decisions to make and as you say it is not just about you but your families lives to consider.
What helped me was to write down every fear, question, thought, practicality and side effect etc. I could think of and make sure I talked about each with my consultant. I found mine spoke this different medical language so I had to ask for clarification sometimes. It also took the pressure off me to say I would like a little time to consider before making such a big decision.
You are so right that it often doesn’t matter about the condition we have or the circumstances we often share similar fears, thoughts, feelings and practicalities.
Please let us know how you get on.
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You sound like you’re on top of things @Est30 and have a plan. My team weren’t very approachable and never really discussed things with me so I often forgot to ask questions or didn’t know which questions to ask. I’m on my own also, so although I’ve got family and friends they are all scattered around the country and I didn’t feel I could discuss how I felt with them and often withdrew into myself pondering the future. Hope you find the answer that is right for you.
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Thanks @Franko - sorry you had that experience. I do feel lucky with my care team but it’s always hard to strike the balance between having a billion questions and feeling that they are so busy and rushed to talk you through everything. I think i will try to make a note of all my Qs as you and others have suggested. BW to you
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Hello I started this treatment after 15 years of W&W CLL at the beginning of February I can thoroughly recommend it …The first month was ‘full on’ IV obinutumuzab at the treatment centre and since the treatment centre is 30 miles away and the IV takes 6 hours minimum all pretty tiring.The first dose was a bit disturbing but I was warned that the first month would be ‘rough’. I have not lost any hair and I did not feel sick after the first few IV treatments. I’m now on Obutinumuzab monthly for a couple more months then just the 400mlg of Venetoclax daily. That was built up gradually with lots of blood tests to make sure it wasn’t upsetting anything from 20 mllg.The blood tests are numerous some at the centre but most at the local GP. Finally this treatment has been common place in USA and in EU for some time so it’s not experimental and it has had really good long term results in controlling CLL.I do hope you decide to go on this and that I haven’t put you off as I am really pleased with how its going
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PS I’m 72 and I haven’t felt better with more energy for a long time since getting into a rhythm with the full doses of O&V…I do have a pretty active life style but things were beginning to get ‘hard work’ before I started on this …hope this helps
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Hi @Annie78 thanks for your experiences they are so helpful for all us CLL’ers.
I bet those first month treatments were tiring, I find every type of medical appointment is, but those were very long days.
Please keep updating us how you are getting on.
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Wow @Annie78 you sound like you’re bursting with energy, more than me and I’m not having treatment at the moment! Great to see someone so positive about their circumstances.
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I have been really pleased with this treatment ! I hadnt realised how much I had slowed down …if it keeps me CLL free for a few years I will be even more pleased …
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Hi @Annie78, yes, if it keeps you CLL free for a few years you will be even more pleased, that sounds good to me.
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Hi Annie - thank you so much for responding and for taking the time to talk through your reactions. This is SO helpful and I’m really grateful! I’m really pleased you’re so positive about it, that is incredibly reassuring. We’ve decided that this is the right treatment but I have still been feeling pretty apprehensive. I guess thats unavoidable.
Interesting that you were warned the first month would be rough - understandable that it’s so tiring I think. But great to hear you didn’t have too much nausea.
Really wishing you the best of luck with the rest of your treatment and thanks once again for sharing your experience with me. xx
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Hi @Est30, it really does help to hear the experiences of others.
I think the unknown is bound to make you feel very apprehensive, that is unavoidable and very natural.
Possibly in the future you might be able to share your experiences with someone on this forum.
We might have different conditions but our fears, thoughts, feelings, questions, dilemmas, side effects and practicalities are often similar.
Don’t forget we are here for you and if you would like to talk you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk.
Take care of yourself.
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It’s so useful isn’t it - we can learn so much from each other. I think feeling apprehensive is completely normal. Please keep us updated on how you get on. When does treatment start? X
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Thank you so much @Erica. I’m so pleased to have found this community. When I was on W&W and feeling pretty well I think i tried to ignore my illness. Covid has made all of us blood cancer patients feel our vulnerability very keenly! Grateful to you all and I’ll let you know how I get on as I’m sure others will be going through this treatment in future. xx
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@Est30 Not much help but you are not alone. I have been on watch and wait for 3 1/2 years and start V and O treatment in June 2021.
CT scan, blood test and haematology appointment where I’ll probably find out the timetable of events.
Good Luck with your treatment.
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Hi @Billy1mate, please let us know how you get on at your appointment in June and you are so right you are never alone on this forum, take care.
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