Hello, I was diagnosed will CLL 9 years ago & immediately put on FCR, after being given 2 red blood transfusions. 3 years later I had one cycle of Bendamustine & Rituximab & after another 3 years another cycle of Bendamustine & Rituximab. My only symptoms are increased white count & lymphocytes which rise steadily. Another 3 years have passed & I need more treatment and my specialist wants me to take Ibrutinib. I’m 72 now, fit & travel a lot. I do not like the idea of a permanent pill & the possibility of side effects so I would be interested to hear from other people on the drug.
Thanks
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Benny12
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Most of us find that Ibrutinib resolves our CLL symptoms and has fewer strong side effects than the Chemo alternatives - like those you have had in the past.
There are many trials in progress trying to find the best combination of drugs that will allow long pauses between treatments and Ibrutinib is the favorite starting point.
It is possible that if you start Ibrutinib now, within a few years you can add a second drug like Venetoclax or Gazyva for a few months and then stop all drugs.
I've been on ibrutinib 10 months now and I've found the side effects to be mild, manageable, and far more preferable to the symptoms I had prior to treatment. As for having to take a pill every day forever, I was doing that anyway with blood pressure meds, vitamins and supplements so one more pill isn't an inconvenience at all.
Benny, first of all, no one likes the idea of being on a pill indefinitely. I have been on ibrutinib a year now, and even though my side effects have been tolerable, I wish I was not taking a pill.
But then I think about all the people out there with various types of terminal cancers who would give all they had for an oral pill that could keep their cancer in check. It’s all about perspective, we are actually quite fortunate to have this option.
And I do think with the addition of venetoclax or other new drugs, some of us on ibrutinib will be able to get remissions and get off therapy.
Good luck to you. Ibrutinib has been a relatively east drug for me so far.
I didn’t like the idea of a pill every day for life, but ibrutinib gave me a new life. I feel better than I have felt since I was diagnosed with CLL. The debilitating fatigue is gone and my blood counts are normal now. Side effects are relatively mild. It is so worth it!
Hi Benny 12. I've been on Ibrutinib for over 3 years. I'm not aware of any side effects so far. Bloods normal and taking medication not really much of a problem. Good luck in what ever you choose to do
Lymph nodes reduced within 6 months. Tiredness continues I'm sad to say. Good and bad days energy wise but I can work around that problem. I'm lucky as retired so can choose what I do and when.
I am 71 years old and fit. I chose Bendamustine & Rituximab over Ibrutinib. I will finish all of my B+R treatments this week. I have had a few hiccups, literally in the course of my treatment. I made my own choice of treatment and felt the side effects with Ibrutinib were worse than B+R and really liked the idea of completing treatment in 6 months. I am un-mutated, so like you probably will need treatment after 3 years. I could have another round of B+R when I relapse, however each course of B+R will bring shorter and shorter remissions. Ibrutinib is not a sure thing either, but thanks to current research new combination drug treatments are right around the corner when you do relapse. Great to have so many options. Wish you well.
Thank you. That’s interesting as Bendamustine has been delisted in England now so can I ask where you are from? I like the idea of completing treatment quickly too. I have a new consultant now, as my old one retired, & he has different ideas. I have asked him about Bendamustine again which would be my 3rd cycle, (even though there are big gaps) as I had a very good response previously, but he is not keen. I’m weighing up Ibrutinib & people keep saying their symptoms improve. As I feel perfectly well & my only symptom is rising white count I wonder how it will affect me.
If you are not keen on taking a drug for a long period of time, have you considered venetoclax which will probably be given with rituximab?
You’ve been trying to use bursts of treatment to control this and each one lasts three years. Venetoclax and rituximab is a similar idea tho you might have to take it for two years rather than six months before you are sufficiently controlled to stop it. The data for venetoclax is very good.
This combo is licensed and funded for use in the NHS but obviously you’d have to discuss with your doctor if it was suitable or not for you.
I can see why a doctor might feel that taking a continuous drug might be a better way. Because a three year remission is not that long. Also repeating chemo again and again is now not considered the best option these days by many doctors because eventually it stops working. This is a change in practice that has taken place over the last three years because we now have selective drugs available (venetoclax and ibrutinib)
As for acalabrutinib that is not yet available in England.
Also if you want a second opinion you are entitled to that under the NHS and could go to a specialist in CLL who runs clinical trials and ask for their advice about the best way forward for you.
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