Age 47, female, I was diagnosed with B cell Chronic lymphocytic leukaemia (CLL) a few years ago, I’ve been watch and wait, but now starting treatment - Ibrutinib and venetoclax.
My first lot of drugs arrived today, so I guess I’m starting treatment tomorrow. It’s all just pills to take at home
I have 3 additional drugs to take alongside the Ibrutinib - Allopurinol, Acyclovir, Co-Trimoxazole. This is for 3 months then we introduce venetoclax.
Has anyone else taken the same drugs? Any advice, recommendations? Or just how is it going???
Hi, I have been on Ibrutinib - Allopurinol, Acyclovir, Co-Trimoxazole for about a year. I was taken off Allopurinol last week. I have not experienced side effects other than plenty of small pink spots, especially in the early months. I don’t think that I will be going on to Venetoclax at least that has not been mentioned, I am on a clinical trial. I know we can all react differently to medication but so far I haven’t experienced any issues and according to the consultant I am better than I was this time last year, (although I don’t always feel it!) Good luck.
Thanks for replying Steve, I really appreciate it! And thanks for sharing your experience, I’m trying to stay positive and I’m really hoping I don’t get any of the side effects.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) last year, in November age 51. I started treatment a couple of months on exactly the same tablets that you mention. I start cycle 3 tomorrow and then on the Venetoclax, cycle 4, around the 22nd September. I would say I haven’t had that many side effects really. A bit “achy” at times but that comes and goes. This past week I seem to be getting a bit of cramp in my legs, but nothing that’s worrying me really. In preparation for the Venotoclax I’m having to drink nearly 4 litres of water per day, as my kidney function isn’t particularly good at the moment. Overall I would say things are going pretty well really. I hope everything is going well for you so far.
Thanks for replying. Glad to hear it’s going ok for you. I’m only on week 3 of the Ibrutinib, but yeh similar to you, no real side effects, well I have the rash and bruising but I can hide that easy enough. And I always need a loo nearby with all the flipping water I’m drinking! I’ve got my first review next week so I’ll see what my blood tests reveal. If you get a chance would you let me know how the next bit goes? I know we all react differently but the list of possible side effects is mad and it’d be nice to hear a realistic report of what it’s like. I really hope things carry on positively for you. Keep drinking that water
Glad to hear everything is going ok with your treatment at the moment. Can I just check if your rash and bruising are new? If not, it is important that you let your team know about them if you haven’t done so already.
Keep posting and let us know how you are getting on.
Thanks for your reply, I messaged my nurse last night and she said it’s fine, as long as there’s no bleeding, itching peeling etc. There isn’t so far so I think I’m good
Just wanted to say thank you for sharing your experiences, I am due to start treatment soon for my Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)) , I think it will be the same as @Lindabee but won’t know for sure until next Monday .
It is reassuring to hear how well you are all getting on
I hope your appointment goes well. If you do start treatment, this group has been great for sharing experiences so just get in touch if you have any questions
Oh @DottieB, so sorry to read of this change to your treatment, I hope you’re bearing up okay with it all. I’d likely be anxious! I’m thinking of you, hopefully it goes really well on Monday.
May I ask how it went @DottieB? Please don’t feel obliged to share of course, just so long as you know you’re being held in mind.
I’m well, thanks for asking, although my Polycythaemia vera (PV) might disagree. Had my monthly blood test and my haematocrit is a mere 0.2 % too high, but in I go tomorrow for phlebotomy. Feels so routine now that it’s funny to reflect on how it used to freak me out! Hopefully any changes to your treatment will become pretty routine too.
Glad you are well although that pesky Polycythaemia vera (PV) needs to behave itself . Hope your phlebotomy goes/went well !
Thank you for asking, I start my first cycle of treatment on the 15th September . Starting with Ibrutinib and moving onto Venetoclax in about 3months time .I feel a little trepidation but have read everyone’s experiences of both drugs on here and I think it will be okay .
I love your attitude to things Duncan and enjoy hearing how you are doing and appreciate you checking in , Thank you x
Ha yes @DottieB , imagine if we could give our defective genes a good stern telling off! It was lovely to see my phlebotomists yesterday. My nurse had been off on maternity leave so we had lots to catch up on, and she loves asking me about the UK compared to the US. Felt really nice to be remembered for me, rather than just a membership number and my statistics.
Funny you should say you love my attitude as I think that about you! Isn’t it also funny that we live with these chronic diseases and yet are trying to get on with them as best we can. Younger pre-diagnosis me would never imagine I could tolerate all this or be so resilient—perhaps you know that feeling too. And yet here we are managing these bloody cancers! Well done us, I say!
I’m really glad you’ve got a treatment plan and feel okay about starting those medicines @DottieB . Please do let us know if you have any wobbles though, I know I can still flail about with it all sometimes and try to bring it here for comfort and facts.
It would be good wouldn’t it to tell them off , might feel like we have a modicum of control over them
That sounds like a really good appointment, love a good catch up anytime so during what’s not the best of times would be lovely … haven’t got that relationship with my team yet but the next few months will probably sort that out
I know it’s crazy what we manage and cope with as adults within this chronic disease rollercoaster… I would not have dealt with any of this in my younger days ( surprised I remember them feels they were so long ago )
I hope you are doing well and your review was good. Since my initial message I would say I have been getting more side effects (muscle cramps, diarrhoea , general aching) but it’s nothing I can’t handle at the moment. This week, in preparation for going on to the Venetoclax on the 23rd Sept, I have a CT scan on Monday 15th, the usual weekly blood test and then a meeting with the doctor on the 20th. Oh yes, I’m drinking 4 litres of water a day at the moment, so a toilet nearby is a necessity Would be good to hear how you are doing.
I’ve done cycle one. I had my review after week 3, white cell count down to 22. I thought this was great, but not quite great enough apparently, so really hoping it drops further before my next check up. If all goes well I can do the whole venetoclax introduction from home. The I can work as normal and no need to go back and forward to the hospital. Really hoping this happens as I’m self employed.
Symptom wise my rash and bruises have faded, so I’m doing fine. Saying that I’m actually knackered today so I’m going to finish at lunch and have a nap
Sorry you’re getting more side effects, I guess it all just evolves as we go through the process. I’m a bit worried about the venetoclax, like how it’ll affect normal life, maybe it’ll all be fine. I guess again symptoms will evolve as the months pass . Let me know how you get on with it all, I really hope it goes ok for you
One thing I’m doing is going out lots while I feel healthy and can be in outdoorsy situations. Loving the alcohol free beers!
, general aching) but it’s nothing I can’t handle at the moment. This week, in preparation for going on to the Venetoclax on the 23rd Sept, I have a CT scan on Monday 15th, the usual weekly blood test and then a meeting with the doctor on the 20th. Oh yes, I’m drinking 4 litres of water a day at the moment, so a toilet nearby is a necessity 
Would be good to hear how you are doing.