Ibrutinib side effects

[Mvh0406]

As mentioned in an earlier post, my mother will start Ibrutinib next week. I read about side effects such as bleeding, high blood pressure and heart problems. I'm worried about that. What are your experiences?

[lankisterguy Volunteer]

Hi Mvh0406,

The many past studies show that less than 20% of patients experience any one of the side effects you mentioned. Every one of us with CLL has different experiences with all our targeted treatments.

For most patients that do have a specific issue, the effects are mild and decrease over the early weeks or few months. The doctors should closely monitor the effect, with frequent exams and follow the established, published, written guidelines for dealing with that effect. And nearly every one of the side effects stops when the ibrutinib/Imbruvica is paused.

If the side effect is persistent (especially blood pressure or heartbeat rhythm problems), there are alternative drugs that have less side effects ( acalabrutinib/Calquence, zanubrutinib/Brukinsa, pirtobrutinib/Japirca)

Your mother should be very clear and persistent with relaying her side effects to her doctor, no matter how insignificant they seem.

Len

[rcusher]

I was on Ibrutinib for 5 years with the most annoying side effect being brittle finger nails for which I took Biotin ( low dose ). I hand some fatigue, which an afternoon nap resolved, but I don't know if it was from the Ibrutinib or being 75 years old. I understand that everyone is different, side effects included but I was thankful for those 5 years and I am now in a Clinical trial taking Pirtobrutinib which has me feeling like I'm back to normal and feeling great.

And like Len said don't be afraid to let your Mom's doctor know even the littlest change in her health don't let it possibly get worse.

Wish your Mom good luck with her treatment.

Jack

[SofiaDeo]

Please remember "side effects" are the things that have been reported when looking at larger groups of people overall. The idea is to know *if* a side effect occurs, it's likely due to the drug and not something else. So *if* bleeding or high blood pressure, etc., occur, one lets the doctor know so they can monitor it/adjust the dose/switch the medicine. Regarding bleeding, people generally will bruise heavily/very dark, even from things like sleeping on one side, before things get life threatening. Or a torn cuticle/minor cut or scrape will ooze much more than usual, before bleeding may become internal.

So check blood pressure regularly, note any bruises, let the doc know if any other symptoms happen.

Also know the severity of any side effect differs from person to person, and from drug to drug. I've had very few side effects from some of the drugs, only once did I have side effects so awful I changed the medicine. And this was after months of taking it. So while I won't tell you it's impossible to have a severe side effect that might suddenly put her in the hospital, know it's extremely unlikely anything "sudden" and "severe" occur at the same time. Just note anything that changes, and let the docs know.

[TimHB]

I was on Ibrutinib for 5 years and it caused severe afib, bad enough to put me in the hospital 3 times, each time in the cardiac critical care unit with a heart rate as high as 190. My doctors switched me to acalabrutinib/Calquence which immediately alleviated the afib but caused PVCs (premature ventricular contractions) and bigeminy. They were about to give me a pacemaker when I insisted on going off all medications and everything cleared right up. I've been off treatment for 3 years now (monitored 2x/year at Dana Farber) and I'm doing great and my heart is perfect. The only other side effect I experienced was brittle nails, but that I can live with. But we're all different and most people have no side effects at all. I would advise your mother to pay attention to any suspected side effects and stay in close communication with her doctors.

[bachplayer13]

to be honest most docs don't bother with ibrutanib anymore because of the side effects. the second and third generation btks are more targeted and better with less side effects. just saw dr jain speak about this at md anderson. he said he no longer puts his patients on ibrutanib....he goes to calquence or zanu. in 2020 when i needed treatment i was on ibrutanib and had horrible exacerbation of my hypertension. if you don't already have hypertension then maybe this won't be an issue. but someone that already struggles with controlling hypertension can expect a rough ride with ibrutanib from my personal experience and what i have read. i also had horrible issues with diarrhea. i have a life time supply of immodium at the house lol. finally theyh tookl me off of the ibrutanib when i developed pneumonitis that landed me in the er during covid. i had asked to be put on calqence from the get go but in 2020 calquence was pretty new and my doc at mda pushed back when i asked for it telling me that 'we have more data with ibrutanib' which was true. i deferred to the 'experts. but less than a year later he was doing exactly what i had asked for from the beginning! sigh. live and learn. i had read alot and my gut told me that ibrutanib would not be good for me. i really wanted calquence.....ultimately i ended up on zanubrutanib in jan 2022 and have been on it doing well ever since. i started it before it was approved for cll, was supposed to do so in a clinical trial but that did not work out and so my doc got it for me through insurance but it was a hassle and they denied it at first but mda is pretty good at pushing thru insurance issues.thank goodness

[tozer]

I have been on ibrutinib now for 8 years and during the first few months experienced joint pain and periodic diarrhoea and no other side effects since. My specialist ensures I keep an eye on blood pressure as there is an increased risk of heart attack though small. I exercise daily, eat healthily and drink alcohol moderately. I'm 78 and feel in good health, so ibrutinib has worked well for me

[totara]

Hi from NZ. I was on watch and wait for four years but started ibrutinib four years ago and my blood counts quickly returned to normal plus my swollen spleen and swollen lymph nodes returned to normal. I suffered from mouth sores and ulcers for the first three months but now that only occurs about twice a year and can quickly be controlled by the use of difflam. I have had always had elevated blood pressure and this has slightly increased but I take medication for this. I am aged 74 and still am active both as an accountant and doing physical work such as chainsawing and manual wood splitting on our farm. The day I started the ibrutinib I stopped drinking alcohol and now only drink zero beer and wines. I used to have knee pain but for some reason this disappeared several years ago. I get lots of cuts and abrasions when I do my native plant weed control on the farm but these all heal quickly. So touch wood I am pleased with ibrutinib except I have to self fund it as in NZ chemo is the treatment funded by our health system as the first line treatment. Good luck with your treatment.

[Dragonfly2007]

Hi Mvh0406, Im 65 and been on Ibrutinib for two months, my blood pressure went up a little at the start but nothing that needed treatment. I tire easily (which I did before treatment) so I exercise/do housework in the morning and relax with a book in the afternoon, sometimes I nap. Diarrhea some mornings no worse than before, no other issues and I feel so much better now as the treatment has melted the swollen lymph nodes and I can breathe so can now sleep and exercise (the reason I started treatment was I couldn't breathe due to swelling) I know it's a worrying time but try not to worry 🫣 I hope it's smooth sailing for your mum.

[DogmomLM]

I had a fairly rare side

[mouseygirl]

My mum was on Ibrutinib from 2020 until 2022 and it did cause some cardio problems, it would send her heart rate up and caused irregular beats, resulting in a few trips to A&E. Thankfully not too serious (although scary) she was taken off ibrutinib due to these reasons. It really wasn’t plain sailing for her as ultimately I just don’t think it agreed with her. Her well-being suffered.

All the best, I know how daunting it is.

[Mvh0406]

Thank you all very much for sharing your experiences!

Of course I keep a close eye on my mother. And we will discuss our concerns with the doctor.

All the best for all of you!

Kind regards 🍀

[Tealforeverart]

My husband has leg cramps and hand cramps. In the earlier days he did have some nose bleeds. It seems like there are different side effects at different stages. He did have foot pain that was very uncomfortable for some time. He tried everything to help, but only Topricin Foot Pain Relief Cream helped. Despite the issues it has done wonders against his CLL. It can be very fearful for loved ones, but prayer and bible reading helps me.

[Binco]

I took Ibrutinib for a month and experienced Atrial Fibrulation and rash. A-Fib was treated over 3 day in the hospital and rash lingered for months. However, now back on watch and wait.

[CCgroup]

Hello Mvh0406

I think I can add a little good news.

I'm 84 years old, male, living in Costa Rica. I have been on Ibrutinib for 5 years.

When I started Ibrutinib I was in bad shape, lymph nodes all over my body. Six weeks after starting with 3 ibrutinib per day the lymph nodes were no longer troublesome, and eventually disappeared. I had brittle fingernails, so cut the dose to 2 per day after a year. I still take 2 per day. There are no side effects.

There is no doubt I owe my life to ibrutinib, so I hope your mum has a similar experience.

All the best

Dan

[GigiJen]

Hello,

I was also on Ibrutinib going into my 8th year. The side effects were minor, bone pain, elevated blood pressure (but not enough to need meds), fatigue (I'm not sure if it was/is from the CLL but I believe I had more fatigue on Ibrutinib), bruising, cracked and dried finger nails. Minor side effects but Ibrutinib kept my numbers stable. I am very grateful.

My doctor switched my meds from Ibrutinib to Zanibrutinib (Brukinsa), other than less fatigue, I don't feel much of a difference.

We're all with you!

Sending you much love!

[Deilginis]

it nearly killed me after only 8 wks. I felt dreadful but thought everybody did, mustn’t grumble, etc. I didn’t tell the docs when A Fib started very dramatically at 4 in the morning one night. 2 wks later when I finally attended for my appt 5they didn’t know if I’d had a heart attack or not as I didn’t go in to them when it first happened. Moral of story: if it feels all wrong, it probably is.

[Unglorious]

Just wondering, if Acalabrutinib is available where you live, it usually has less side effects than Ibrutinib.

[DrLV]

Hi Mvh0406:

I was on ibrutinib for over a decade. I was in clinical complete remission for that amount of time.

My worst side effect with ibrutinib was muscle cramps. I found out I was not drinking enough water. Make sure she drinks 9 cups of water a day and stays hydrated. The cramping decreased.

My nails got brittle, but I just clip them short.

Your mother should have cardiology check ups to make sure she is not prone to afib. I did not have that problem.

Once in a while her stools might be a little loose.

I had a wonderful decade of remission! Tell her that she will be okay.

La Verne

[paulabs]

I think the serious side effects may be overrepresented in this thread. With 7.5 years on ibrutinib, my experience is different. At 11 months all blood numbers were WNL and have stayed there with no pain or discomfort. I have had mildly brittle nails (helped by biotin), some weight gain and slightly increased blood pressure, but the greatest side effect: it turned my hair curly! Now I have big, soft white curls that my stylist has turned into the dream no-fuss hairdo.

[Spark_Plug]

I'm going to state the obvious here. All drugs may have side effects. If it's possible your doctor should be pointing you toward the one testing that has the best fit with the least chance for life altering side effects.

Every prescription I get from the pharmacy has the obligatory statement, your doctor has weighed the risks and feels you should take this despite possible risks, stop intake and report if you notice these side effects in your case. [paraphrased]

[22011]

I'd like to add my story in case it might be helpful for your mother. I was started on ibuternib a couple of years ago when my spleen enlarged after 12-13 years of watch/wait. I was started on the 280 dose. I immediately became nauseous from it and was prescribed a standard anti-nausea drug which worked fine and I only needed it a few days. But on the 5th day I broke out in a full torso solid red rash.The drug was stopped for 2 weeks and I was started again on the 140 dose. On that dose I has some lesser rashes and sporadic dark red blotches on my face and neck. My numbers went up at first as they are supposed to as the spleen spews out the malignant cells it has been collecting, and then they dropped dramatically and stayed low for a year. My hematologist said I was "exquisitely sensitive" to the drug. So one day I decided to get a full body massage and my masseuse said "what's going on with your legs? I generally see this in diabetics!" Well I hadn't really paid much attention but the capillaries in my lower legs were all broken and red like a rash. My doctor would check my ankles when I went in, but I always wore pants and he never made it a point to look at my legs. The masseuse suggested I wear compression hose. I told the doctor's office what happened and I began to wear compression socks. It worked and the redness eventually went away. (As an aside, my nighttime leg cramps also went away after 30 years!!!!) After a year I asked if I could try going off the drug because I was still having annoying bleeds and my numbers were almost normal. Doctor agreed and long story short my numbers have gone up so slowly and such a small amount that I haven't needed treatment again. If I need to go back to one of these drugs again I will insist that I be started on the lowest dose available. Someone else posted on the forum once that these drugs should really be titrated to a person's weight, and I agree with that as I am only 130 pounds. Take aways for your Mom: If she's a small person, ask the doctor if she could be started on a low dose and work up if needed (might not be needed). Be ready for possible nausea at first. Keep an eye on her lower extremities and if she sees broken capillaries point it out to her doctor and wear compression socks. Hoping her treatment is successful.