3-Week Ibrutinib Holiday?

[hhk50]

After five successful years on Ibrutinib, the only thing that I can do when I see my CLL doctor for a quarterly visit is to whine about the minimal side effects - nails, fingertips, some blood pressure issues, etc. Thank God that the stuff is working and I should probably just keep my mouth shut.

However, he suggested that I take a 3-week Ibrutinib holiday in order to see how my body responds to the absence of drugs, and then restart again.

Any thoughts or experience on taking a "holiday" and then restarting?

[lankisterguy Volunteer]

Hi hhk50,

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My CLL expert doctor did the same thing- in order to sort out what was truly related to the drug and side effects from other causes. If the holiday reduces your side effects, you may want to consider switching to acalabrutinib / Calquence or zanubrutinib / BRUKINSA.

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I had a strong skin rash on ibrutinib, but the rash disappeared for 18 months on acalabrutinib. Now that it has returned, and even though it is mild, Dr. Furman is switching me to pirtobrutinib / Japirka that was FDA approved for CLL just this month.

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Len

[hhk50 in reply to lankisterguy]

Thanks, Len. I hadn’t thought of Acalabrutinib. Maybe that’s the answer to my problems. Although the cracked fingernails and split fingertips are a nuisance, the BP is really the thing that I want to deal with.

I’m taking a low dosage beta blocker for the past two years because the Ibrutinib raised my BP, but now it’s going up again, and I’ve had a couple of episodes of Afib.

I’m going to try the three week holiday, and see what happens. Thanks for your input.

[Britam]

I was taking Ibrutinib as my first treatment starting in March 2019. However, I developed tachycardia and AFib so my CLL specialist suggested I come off it in December 2019 so I could take a particular heart medication as they were not compatible. I was a little nervous at first but actually was able to remain off treatment for three years and started zanubrutinib in March 2023. I have not had the nail issues or other major side effects and my blood work is all in the normal range now. My specialist has reduced the dosage to half now. I think a three week “vacation” from Ibrutinib would be fine if your doctor is recommending it.

[hhk50 in reply to Britam]

thanks for your input. I’m going to give it a try.

[AnneHill in reply to hhk50]

You might like to try a supplement called Biotin. When I began Ibrutinib nearly 5 years ago, other people in the uk were having the nail problem. Its painful when they break really low down. It takes a while but if you are lucky it will work. Have you had your B12 levels tested? A sore tongue is a symptom. I take 120mg of Ibrutinib now and the side effects are a lot better but I still have painful hands and wrists.

I stopped taking it for around 10 days because of a couple of procedures. I was better but when I started taking the Ibrutinib again I had the side effects of pain in muscles and joints worse than before. It improved but I have to stop again for an op on my toenails.

I will write down how I feel each day and see if I have less pain generally.

I have considered having a break from Ibrutinib but was told after 6 weeks I would lose my NHS funding. I am in remission and lowering the dose helped.

Anne uk

[hhk50 in reply to AnneHill]

thanks, Anne. Yes, I do take 10,000 mg of biotin every day, as well as vitamin B12. My dermatologist recently recommended something called Eucerin Advanced Repair Cream. I use it during the day, and I use Working Hands at night. They help my skin, but the nails are still very soft and splitting.

[AnneHill in reply to hhk50]

Its a shame your nails are still splitting. Mine are soft but they broke off so low and were really painful when I first started Ibrutinib.My skin needs moisturising most days. My main problem is joint and muscle pain. I have had surgery on my lumber spine which has affected the balance of my back and I have chronic pain but pain in other areas isnt related to back pain. I have a telephone consultation in the morning and I will ask more questions than usual.

[CoachVera55 in reply to Britam]

Hello Britam, I am curious why your doc reduced your Zanubritinib to 1/2 dose? I ask because full dose wasn’t compatible for me, did 1/4 dose for 3 months & just graduated to 1/2 dose & my bloodwork is amazing 🥰 I’d be glad to stay right here too if possible. I really suffer with all the side effects so I’d love to stay right here at this sweet spot…

[Britam in reply to CoachVera55]

I think the reduction in dosage could have been for a couple of reasons. I seem to remember my specialist at Moffitt mentioning a possible reduction when I first started Zanubrutinib. My blood work is all within normal range now , I do not have any swollen lymph nodes and I have done well on it with no side effects. I have had a few tachycardia episodes but I had also had those before starting the medication. My specialist thought reducing the dosage might prevent it becoming any worse.

I hope your side effects improve Coach Vera.

[CoachVera55 in reply to Britam]

Yes thanks, I get the initial hit when I increase dosage or stop for a diagnostic test but otherwise Zanubrutinib is truly amazing. I said it in the beginning after my near death experience, we can not blame the CLL or the medication, its the piss poor physician who is uneducated with the side effects or who straight out don’t give a damn & I stand on that. Because the medical pamphlet really spells out everything expected & that is one of the major benefits of this drug, the ability to modify the dose, duh 🙄

After the untreated Pleurisy that led to Left Pleural Effusion, Pneumonia vs Aetelasis within the first 13 days or even my complaints 5 days on the drug of severe mouth, rectal & feet pain, large hematoma & drop in hemoglobin all of this could of been avoided with a reduction in dosage. But all my complaints, even face to face with this fake doctor while actively having chestpain is why things went left!!!

Anywho I was on 80mg daily for 3 months while my heart & lungs stabilized with still great labs but my abdominal lymph nodes were still growing. Now on 1/2 dose my labs are normalized, but that 2nd week I got an URI & Plts dropped just like its documented to do. But everything rebounded & I love Zanubritinib. I find it to be a strong & effective medication compared to Acalabrutinib since I was on them both.

What a major difference from April til now🙌🏾

[LeoPa in reply to Britam]

Wow,you took Ibru for 9 months and had a 3 year drug holiday after that? Amazing.

[Britam in reply to LeoPa]

Yes, I thought it was amazing too especially as I am unmutated. However, I had received Rituximab infusions before I started the Ibrutinib because I had developed autoimmune hemolytic anemia and it was thought it might help. ( I was trying to avoid long term treatment) It helped lower the very high lymphocyte count somewhat but my hemoglobin went even lower so I needed to start treatment with Ibrutinib. My lymphocytes did eventually start going up and by the end of the three years were high. The reason I started treatment with zanubrutinib was because my lymph nodes were enlarged and starting to become a little painful, my hemoglobin was below normal level and I wanted to avoid another AIHA episode.

[LeoPa in reply to Britam]

Thank you for the details, good to hear the current treatment works well for you!

[Aerobobcat]

Hi hhk50, I recently posted “Ibrutinib Stopped”. I had been on this treatment for 10 years starting in a trial before it was an approved treatment in the UK.

I have always suffered from side effects without knowing the real cause, is it my pre-existing symptoms? or perhaps related to all the medication I have been prescribed? Including the Ibrutinib.

I have now been off the medication for 4 weeks with absolutely no improvement or remission from any of my symptoms.

I guess I should give it more time and see what transpires, but in reality I’m not holding my breath.

My regards

Aerobobcat

[hhk50 in reply to Aerobobcat]

Thanks, Aero. Shame on me for not doing a search before I posted. After seeing your reply, I went back and looked at your original post plus many others and got some interesting input.

The thing that I have to wrestle with is that my side effects are not that horrible and maybe I should just shut up and stay the course since the Ibrutinib is working fine.

My only big concern is that my BP is creeping up again, with two episodes of Afib in the past four months and I really don't want to mess around with more cardio drugs other than the low dose beta blocker that I'm taking as a result of the first episode of BP creep.

Maybe, as Len suggested, I need to think about a switch to Acalabrutinib.

[hervec in reply to Aerobobcat]

Bonjour

At ASH 2023 a long term study about Ibrutinib (10 years) 17 patients are still on traitement (out of 84 ). 7 have uMRD 4 have low MRD 6 have High MRD... You have a chance to be part of 40% uMRD.

May the force be with you

Herve C

[Aerobobcat in reply to hervec]

Hi Herve, many thanks for your reply and the interesting data. I will certainly keep this in mind as I progress through my current Ibrutinib holiday.

Aerobobcat

[Aerobobcat]

Yes, Acalabrutinib has been suggested to me as the next possible medication.

As for side effects, as you say most may seem insignificant and manageable but certainly the heart issues can’t be ignored.

I’ve notiticed from recent information on the forum that there is now a belief among the medics that 5 years is perhaps the time to re-evaluate Ibrutinib especially now that other treatments are available.

Anyway I wish you luck and hope you get some relief from your symptoms.

Aerobobcat

[larry54]

Hello: I have been on imbruvica since 2017. I have the same issues as you. They are minor issues to me considering what it could be like. I am alive and imbruvica is working.

Take care and enjoy life

[CoachVera55]

I would switch to Zanubritinib, if that is an option since its as effective & less cardiac issues reported. Acalabrutinib is also more tolerable I read. I was on both & they both performed just as described #GODSPEED 🙏🏾

[hhk50 in reply to CoachVera55]

Thanks, Vera.

[Jacksc06]

Hi I am at present on a Ibrutinib holiday as I am taking Filgrastim injections due to neotropenia. Bone and joint pain but not sure if it's the jabs or not taking IB. I had issues with splitting nails and started taking Biotin which has helped a lot. Best wishes.

[hhk50 in reply to Jacksc06]

Thanks very much for the information.