Has anyone been able to go down to 140mg ibrutinib due to side effects? What was the result of this descent? Thx.

[Denisguay]

140 MG Ibrutinib

[lankisterguy Volunteer]

Hi Denisguay,

I have modified this comment to cite the current prescription drug sheets that do mention using a 140 mg dose without a patient weight consideration, see:

rxlist.com/imbruvica-drug.h...

Len

Dosage Modifications for Adverse Reactions

[Denisguay in reply to lankisterguy]

What do you mean? What does It have to do Blood saturation?

[lankisterguy Volunteer in reply to Denisguay]

Hi Denisguay ,

I'm sorry - I was recalling older data when there was a dose / weight target for Ibrutinib.

The link and the image show that is no longer mentioned on the medication guides. And a 140 mg dose is acceptable before discontinuing ibrutinib without mention of the patient's weight.

rxlist.com/imbruvica-drug.h...

Len

[mrsjohnpaul]

I have been on ibrutinib for over six years. I have been on 140mg per day for over five years. Doing well. Numbers in line. CLL specialist happy with my results.

[Denisguay in reply to mrsjohnpaul]

Thx . And before those 5 years did you take? How much do you weigh? How Old?

[mrsjohnpaul in reply to Denisguay]

I took 420 for about two months. I then went to 280 for about ten months. I then went to 140. I have been taking 140 for 5.5 years. I am 76 years old and weigh 165.

[Provence]

Hello Denisquay, I have been taking Ibrutinib 140 mg for two years now, with very good results. I had terrible side effects after I started with Ibrutnib 420mg in August 2020, then was put on 280mg end of November and since there was little improvement, onto 140 mg in December. I still have some side effects but nothing major and life has become very pleasant whilst the cancer is well under control. My blood count is normal, my energy has been returning, my lymph nodes are not swollen. I count myself very lucky and am grateful!

I hope it works for you as well,

Kunderke

[Provence in reply to Provence]

Just to add, I am a 75 year old woman, height 1.59 m, weight 59 kilo.

[Denisguay in reply to Provence]

Thank you so much.

[Denisguay in reply to Provence]

What kind of side effect did you have,?

[Provence in reply to Denisguay]

I had really unbearable skin rashes on my scalp and neck. Plus more bearable different kind of rashes on my face. I had constant diarrhoea, very brittle split nails, and eye and mouth infections. Plus I developed a skin cancer on my nose, basal cell carcinoma. This latter problem is still with me. I had a second one removed last February, and now again have various spots that I will have investigated by a dermatologist.

The skin rashes went away with the lowered dose plus an anti-histamine for about 4 months. I still have minor digestive problems but nothing serious, and gas rather than diarrhoea. Overall I feel good now, but have to avoid sun exposure because of my skin problems. That is annoying since I live in a very sunny place - Provence, France - but I have adapted to it. Life is good thanks to Ibrutinib!

[Denisguay in reply to Provence]

Hi!! I have basal cells many years ago before CLL, 8 from surgery and more are coming...

[Provence in reply to Denisguay]

Poor you, that must be a real nuisance. Especially if you live in sunny Spain.

[Denisguay in reply to Provence]

I think it's not because the sun... always the basal cells on the legs where I don't sunbathe there! 😀

[Denisguay in reply to Provence]

How did you know it was Spanish?

[Provence in reply to Denisguay]

Because underneath your initial post there was a box that said Denishguay, Male, Spain.

[Denisguay in reply to Provence]

😅

[BeckyLUSA]

Took Ibrutinib and Venetoclax for 2+ years, then Ibrutinib alone since 2018. In 2019 dropped to 280, and then down to 140. Blood work great- no side effects. 5’7” and 165 lbs.

[rubberlegs68]

I started Ibrutinib at 420mg but was dropped to 280 mg due to neutropenia. This was dropped to 140mg when my neutrophils didn't recover. I have been on 140kmg for over 4 years now and my numbers have held steady. I'm 72 and weight is 155lbs.

[CoBubby]

I started full dosage in 2018. I had side effects, and was put on 2/3 dosage. Had issues with platelets, and reintroduced with 140 (1/3 dosage) for a couple of years now. My counts have remained good. I am 73 and weigh 110. Good luck.

[Dahlia7]

I was on 140 mg once daily for years and did well. I actually was on 140 mg every other day for a number of months and my disease remained controlled. Good Luck. Tony

[Denisguay in reply to Dahlia7]

What say your Doctor about?

[Dahlia7 in reply to Denisguay]

I’m not sure I know what you are asking. He thought once the disease was controlled a lot of the drug remained to hit off targets and maybe wasn’t necessary to maintain control of the CLL. I was successfully controlled with few side effects at 140mg once daily.

[Denisguay in reply to Dahlia7]

Yes, his opinión. Opinión of the doctor.

[Dahlia7 in reply to Denisguay]

yes it was the opinion of the doctor.

[Denisguay in reply to Dahlia7]

My doctor says not to go down to 140mg and I want to. I was diagnosed in August 2016, I started taking Ibrutinib 420mg in October 2020, and a year later, 2021, I asked the doctor to go down to 280mg and he agreed. Last October 2022 I asked him to go down to 140mg and He said no, although my labs are perfect, just a little low platelets. But I don't feel well and I want to try only 140mg. What would you do?

[Dahlia7 in reply to Denisguay]

I would listen to my doctor. He knows your case better than I do. I would however ask his reasoning for not wanting you to decrease the dose. It’s very important to have good rapport with your providers. I think a discussion is in order. Tony

[Denisguay in reply to Dahlia7]

He say no no no...and I say yes yes yes . That's all the discusión...😂

[Dahlia7 in reply to Denisguay]

Well he needs to give you his reasons for no no no. You can always seek another opinion if his reasoning doesn’t seem sound to you.

[Denisguay in reply to Dahlia7]

Too much caution I think, but my symptoms are unbearables...

[Denisguay in reply to Dahlia7]

He say: The medicine might stop working.

[Dahlia7 in reply to Denisguay]

ask why you couldn’t go back up if it stops working. You need to create a dialogue. Be persistent until you are satisfied.

[Denisguay in reply to Dahlia7]

I asked Everything else.

[Dahlia7 in reply to Denisguay]

I’d probably seek a second opinion.

[Denisguay in reply to Dahlia7]

I did. I have two doctors. Both cautious.

[Denisguay in reply to Dahlia7]

Where you From?

[Dahlia7 in reply to Denisguay]

Ohio. I use The James cancer center.

[Lancerlady]

Yes I had to go down. They had me at a very high dosage and I couldn't handle it. 140 worked good for me. I am now in remission and have been for almost a year. I have stage 4 and was told I could never go into remission. I told the doctor he didn't serve the same God I did! Why they would say that is beyond me.

[Miller1960 in reply to Lancerlady]

You said your in remission, does that mean you’re not on any medication anymore? I’m 3 1/2 years on 140mg ibrutinib.

[Lancerlady in reply to Miller1960]

I am just on palliative care for pain. I rang the bell last year and they call it remission.

[Denisguay in reply to Lancerlady]

What do you mean with palliative?

[Northland]

Thanks for the comments as this is interesting to me. I've been on the full 420mg dose of Ibrutinib for 31 months and while I feel good for the most part and my blood tests are good I do have side effects such as cramping, toenail fungus, skin rashes and occasional joint and back pain. So, I will talk to my hematologist after my labs come back next week.🙂

[SLLJOHN]

I have been on 140 for 15 months (started on 2 tablets before with side effects). Previously on Ibrutinib which did the node heavy lifting (again 420 mg reducing to 140mg over 3 years). Alcalabrutinib now working well and next to no side effects, so life is great. I am male 64 years old.

[Denisguay in reply to SLLJOHN]

I can't understand your timeline

[SLLJOHN in reply to Denisguay]

Apologies, doesn’t make sense to me either!……Ibrutinib roughly 5 years ago reducing gradually from 420 to 280 and then 140 2 years ago. Side effects horrible initially…stiff limbs, rashes, Afib etc. Moved to Alcalabrutinib Feb 2021 as deemed to have less side effects than Ibrutinib….started on full dose 280 and soon reduced to 140. Low dose Ibrutinib had less side effects and Alcalabrutinib very few on small dose.

[Denisguay in reply to SLLJOHN]

akala is also measured at 140 or 280mg?

[Denisguay in reply to Denisguay]

What are you taking now?

[SLLJOHN]

200 full dose(2 tablets) and 100 half dose(1 tablet)

[Denisguay in reply to SLLJOHN]

Why did you stop Ibrutinib if 140mg It was ok!!!??

[SLLJOHN in reply to Denisguay]

My consultant suggested Alcalabrutinib was the next generation after Ibrutinib with reportedly less side effects. My experience and other comments on the site would support this.

[Denisguay in reply to SLLJOHN]

Yes, but only when Ibrutinib doesn't work perfectly at 140mg and you said it was working pretty well at that dose.

[SLLJOHN in reply to Denisguay]

Yes it was, but the Alcalabrutinib is better and thought to be less likely to bring on Afib.

[Jacksc06]

Hi I have been taking 140mg for around 4 years. I am 62 and weigh 184lbs.

[Denisguay in reply to Jacksc06]

And before what did you take? How long ago were you diagnosed? . 200lbs! tall 185 and you? Thx.

[Denisguay in reply to Jacksc06]

And now , what are you taking?

[Jacksc06]

I had four cycles of Bendamustine & Rituximab in 2017. Now taking 140mg Ibrutinib daily.

[Denisguay in reply to Jacksc06]

Why all those changes?

[Jacksc06 in reply to Denisguay]

The Ibrutinib became available to me after the B& R treatment.

[Denisguay in reply to Jacksc06]

Thx.

[Cgolen99]

Hi, I was diagnosed with CLL in January 2014 at age 51. I started my first treatment in April 2018 at age 55. I was started on the full dose of Imbruvica (420 mg) for 5 days and my side effects of swelling and joint pain were so severe it landed me in the Emergency Room. My Oncologist then took me off of that for 5 days while I took prednisone to get the joint swelling down (everywhere!). She then started me on just 140mg after that 5 days and I have been on 140mg ever since. This will be 5 years in April. It took my numbers longer to come down than those on the full dose, but I have done fine on 140mg. I still have joint swelling and pain about 1-2x month and very occasionally take 5 or 10mg of prednisone if it gets too bad, but my numbers are doing quite well and I manage the side effect. I am now 60 years old.

[Denisguay in reply to Cgolen99]

Hi! Thanks for your answer. What does it mean mt ?

[Cgolen99 in reply to Denisguay]

sorry that was a typo. It was supposed to say my.

[Denisguay in reply to Cgolen99]

Ok. Thx. So how long did it take to get your numbers down without the full dose?

[Cgolen99 in reply to Denisguay]

I can't recall exactly but I think about a year? My lymph nodes went down very quickly, within weeks I believe. My oncologist was happy as long as the numbers continued downward every 3 months and they did. I believe at a year my ALC was at about 5.6 and my WBC is always somewhere between 9.5 and 12.0 and she is fine with that also. I really have had no issues other than the joint stuff. Pretty lucky I think.

[Denisguay in reply to Cgolen99]

Your are talking now only with 140mg.

[Jemorgen]

thanks for this thread. I found it very encouraging.