Is anyone with cll on daily total 140mg ibrutinib & what are your concerns?

[Bobsterguy]

I presently take 240mg total ibrutinib daily for past 3 years & my doctor is considering lowering it to 140mg daily? Is anyone here with cll on just a daily total 140mg ibrutinib and what are your concerns? Ibrutinib has numerous side effects (like fatigue, bruising, cough etc) which might be minimized by lowered dose as long as that doesn't compromise effectiveness. In 3 yrs Ibrutinib has dropped my white count from 180k to just 12k and I'm reluctant to mess with its past success. But I would be pleased by fewer side effects and possibly lower cost. Thanks for your feedback. Bob

[AussieNeil Administrator]

Hi Bobsterguy,

I'm pleased that you are discussing this with your treating doctor and asking for experiences here. The Related Posts section has brought up this older post with lots of replies healthunlocked.com/cllsuppo... but we've a reasonably number of our community who have more recently reported doing well on 140mg of ibrutinib. Talk to your doctor about monitoring your lymphocyte count, rather than your white blood cell count, for a much more accurate measurement of your CLL tumour in your blood. Ask your doctor what other signs they consider would indicate a need to switch back to 280mg.

Neil

[Nickos66]

Hi Bob,I’ve been on minimum daily dosage for coming up to 2 years,purely because of the side effects caused by Imbruvica.The side effects lessened considerably and my bloods have maintained a constant level of normality.The fatigue not so as it’s ingrained in the CLL condition itself.

[francc]

I've been on imbruvica since it was PCI 32765 in 2012. In the last 2.5 years I have been slowly developing some breathing/heart issues assumed to be Afib. Because of it I went off Ibrutinib for several months and found I had absolutely no changes in my health or my bloods. And Neil, I suddenly had no bruises on my arms and no NEW ones on my legs. .. (and my fingernails were presentable.) We are now dealing with options for the meds because Eliquis and Atorvastatin are blood thinners, and a stent would mean a blood thinning drug for a year. I will be having that conversation with my doc next week.

[BeckyLUSA]

I have been on the lower 140 mg for almost 2 yrs now with numbers in line and no side effects. My CLL thus far is completely controlled by the 140 mg daily. Good luck!

BeckyL USA

[clladytime in reply to BeckyLUSA]

I have been on Imbruvica 140mg for a few months since I'm MRDneg. Still have bruising. May go off the drug depending on next blood test and dr. visit.

[Bobsterguy in reply to clladytime]

Thank you to all who replied. Looks like Imbruvica 140mg is a reasonable option for me to consider & likely try. Thank you 🙏. Bob

[Denisguay in reply to clladytime]

Díd you left Ibrutinib?

[Provence]

Hello Bob, I started on Ibrutinib August 2020, but by December 2020 the dose was lowered to 140 mg because of the awful side effects I was having. Since I am on the 140 mg dose I have little side effects ( mainly splitting and breaking nails, and a little bit of digestive problems) and the illness has not progressed at all. My bloods are normal and I have much more energy than I had in the watch and wait period. My haematologist is pleased! And so am I. May it all go well for you as well.

[Bobsterguy in reply to Provence]

Thank you to all who replied. Looks like Imbruvica 140mg is a reasonable option for me to consider & likely try. Thank you 🙏. Bob

[Denisguay]

What did you do in the end?

[Bobsterguy in reply to Denisguay]

Good news...I wanted to post some feedback on my progress since starting ibrutinib 140 mg 1x daily capsule for last 9 months. My wbc has remained in mid normal zone so that's great news. My lymph number has been stable a 6 & not increasing while normal is 4. Basically I'm doing about the same on the 140 mg Ibrutinib as I was on the 280mg Ibrutinib. I continue to have bouts of fatigue periodically and some moderate skin bruising continues. I also continue with my eliquis Rx for AFib and Rosuvastatinv rx. I remain pleased with MD having reduced my daily Rx ibrutinib 240mg to 140mg capsule. That's much cheaper too. I still don't like taking a total of 12 different pills daily but my doctors tell me to just recognize the purpose of each. Just wanted to give you all a good update of taking lower dose 140mg ibrutinib capsule for past 9 months and being happy so far. Tx. Bob C 👍👍

[Denisguay]

How are you now?

[Bobsterguy in reply to Denisguay]

I have a doctor's appointment on December 12th and will then decide about switching to 140 mg ibrutinib. If I switch I hope I can get CBC every two weeks to monitor for a while. We'll see how it all goes. Thanks 👍

[Denisguay]

I Will try too. Thx.

[Bobsterguy]

Please let me know how you do? Tx

[GreyBeard412]

I am on Imbruvica since 2018 and I am on one capsule per day and it seems to be holding well and my lymphocyte count is in the normal area. Side effects are mainly a fib and an increase in blood pressure. Other than that everything is good. I hope that helps.

[Bobsterguy in reply to GreyBeard412]

Thanks. I have recently also developed AFib. Do you think afib may be a consequence of Ibrutinib? I'm now taking Eliquis for AFib. My most annoying thing is repeated daily cough of excess mucus. FYI a mayo ENT doctor recommended using a daily Neilmed ($12 Walmart purchase) sinus flush and that has helped a lot. Tx. Bob

[AussieNeil Administrator in reply to Bobsterguy]

Atrial fibrillation is indeed a recognised adverse event from taking ibrutinib, though it can also be a consequence of aging, Later generation BTK drugs have much lower incidences of afib, but still more than is seen in an age matched population.

Most ibrutinib side effects reduce in time. Exception is worsening high blood pressure.

[Bobsterguy in reply to AussieNeil]

Thank much. I will discuss with my MD too. 🤞

[Bobsterguy]

I wanted to post some feedback on my progress since starting ibrutinib 140 mg daily for last 5 months. My wbc has remained in normal zone so great news. I continue to have bouts of fatigue periodically and some moderate skin bruising continues. I also continue with my eloquis Rx and Rosuvastatin. I remain pleased with MD having reduced my daily Rx ibrutinib 240mg to 140mg. I still don't like taking a total of 12 different pills daily but my doctors tell me to recognize the purpose of each. Just wanted to give you all an update of taking lower dose 140mg ibrutinib capsule for past several months and being happy so far with doing so Tx. Bob C 👍👍

[Jacksc06]

Hi. I have been taking 140mg IB for 4 years now. It is to date keeping my Cll under control. I do have fatigue and joint and muscle pain but it is manageable.