Doing well on 140mg ibrutinib capsule for past... - CLL Support

CLL Support

23,336 membersโ€ข40,042 posts

Doing well on 140mg ibrutinib capsule for past 9 mos

Bobsterguy profile image
Bobsterguy
โ€ข18 Replies

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 ๐Ÿ‘๐Ÿ‘

Written by
Bobsterguy profile image
Bobsterguy
To view profiles and participate in discussions please or .
Read more about...
18 Replies
โ€ข
PaulaS profile image
PaulaSVolunteer

Good to hear this, Bob.

Several years ago I too reduced my Ibrutinib to 140mg daily, and my CLL has been stable. Lymphocytes are still a bit high at around 7 (thousand) but other counts are in normal range.

I suspect that many patients would do just as well on lower doses of Ibrutinib, and would suffer less side effects by doing so.

But it's not a case of one size fits all. It's possible that heavier people need higher doses of Ibrutinib, and some people have more aggressive disease. I'm not a big person, and have a 13q deletion and mutated IGHV.

Paula

Bobsterguy profile image
Bobsterguyโ€ข in reply toPaulaS

Thanks Paula. Sounds very similar to my experience. Good luck.๐Ÿ‘๐Ÿ‘

clladytime profile image
clladytimeโ€ข in reply toPaulaS

I too am on 140mg ibrutinib for a while now, down from 240. I am thinking of asking my doctor about reducing to 70mg tablet, which is now available. Less side effects on the 140 mg vs 280 so maybe cutting down to 70mg will be beneficial as well.

clladytime profile image
clladytimeโ€ข in reply toclladytime

Down from 280 mg.

PaulaS profile image
PaulaSVolunteerโ€ข in reply toclladytime

Good point, Clladytime. Definitely seems worth asking your doctor about reducing to 70 mg. Are your bloods in normal ranges now?

Bobsterguy profile image
Bobsterguyโ€ข in reply toPaulaS

Turns out Ibrutinib 70 mg is twice as expensive as 140mg. I will keep inquiring re that change to 70mg. Bloods are pretty near normal now on 140mg. Tx

clladytime profile image
clladytimeโ€ข in reply toPaulaS

Yes bloods are normal per flow cytometry. Don't know why 70mg would be more expensive than 140mg.??

PaulaS profile image
PaulaSVolunteerโ€ข in reply toclladytime

Very strange. I can understand it might be the same price, but not more expensive!

clladytime profile image
clladytimeโ€ข in reply toPaulaS

Agree, but should be cost less for a lower dose. I'll let you know if I go on the

lower dose.

Bobsterguy profile image
Bobsterguyโ€ข in reply toclladytime

Tx

Bobsterguy profile image
Bobsterguyโ€ข in reply toclladytime

If it is pill form of 140mg maybe can cut in half. My 140 is capsule not cutable. Bit of hassle.

AussieNeil profile image
AussieNeilPartnerAdministratorโ€ข in reply toBobsterguy

The official advice on Imbribica dose administration,

rxabbvie.com/pdf/imbruvica_... states;

"Swallow tablets or capsules whole with a glass of water. Do not open, break, or chew the capsules. Do not cut, crush, or chew the tablets."

Neil

clladytime profile image
clladytimeโ€ข in reply toBobsterguy

No need to cut in half if your md prescribes it, as it is available now.

Bobsterguy profile image
Bobsterguyโ€ข in reply toclladytime

No good if 2x the price for 70mg vs 140mg. If can cut 140mg pill in half then half the price automatically. Unfortunate situation I think...

Bobsterguy profile image
Bobsterguyโ€ข in reply toclladytime

I'm taking 140mg ibrutinib for 9mos with near normal bloods. I asked about 70mg and was told it is twice as expensive. Crazy. I will keep asking...

PaulaS profile image
PaulaSVolunteerโ€ข in reply toBobsterguy

Yes, it sounds crazy! It will put people off reducing their dose even if they'd do better on a smaller dose.

Bobsterguy profile image
Bobsterguyโ€ข in reply toPaulaS

True...IB pricing is crazy

CoachVera55 profile image
CoachVera55

Thank GOD your doctor worked with you. When I started the Onc acted like a robot & would not listen to me or about my side effect symptoms but after 2 ER visits in 2 weeks, I fired him. Unfortunately I stayed in the same practice & still my side effects were ignored & that caused another ER Visit within 3 months. I prayed on it (while off of 100mg of Acalabrutinib) & with divine intervention I lower that 320mg of Zanubrutinib to 80mg. I still got good results with symptoms & bloodwork.

Then I got with a CLL Specialist & she made sure that my Chest Pain & Respiratory issues resolved & now doing well on 1/2 dose of Zanubritinib 80mg in AM & 80mg in PM. We are all different & require customized treatment at times.

I kept hearing about a 90yr old who could tolerate full dose & exercise. Or even about patients that can be off the medication for weeks at a time. Clearly that is not me, my normal exercise routine started this downward spiral so I am finding a new normal with exercising. I can not do more than 4 days off the medication without the most painful โ€˜rigorsโ€™ that feel like the med is literally ripping out of my bones & that I am about to convulse. So good for you๐Ÿ‘๐Ÿพ๐Ÿ‘๐Ÿพ๐Ÿ‘๐Ÿพ

Not what you're looking for?

You may also like...

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

I presently take 240mg total ibrutinib daily for past 3 years & my doctor is considering lowering...
Bobsterguy profile image
โ€ข

Long time DX,SORT TIME TMT

I was diagnosed with CLL in 1995. Iโ€™ve been on W&W until this year in Sept. at age 86. Treatment...
desti profile image
โ€ข

4 years on Ibrutinib and now seeing elevated BP

Hi all, As per title I've been on Ibrutinib for a little over 4 years (reduced dose of 140mg/day...
Redlion profile image
โ€ข

Is Two Weeks Off Ibrutinib Risky?

My husband has been on ibrutinib for 9 years as his first and only treatment. He takes 140 mg per...
Ibru profile image
โ€ข

severe Leg Muscle pain and weakness Using Ibrutinib daily.... want to try every other day, thoughts ?

81 years old , in decent shape, (try to play pickle ball 3 times a week,) in 2012 diagnosed with...
fish61 profile image
โ€ข

Moderation team

See all
AussieNeil profile image
AussieNeilAdministrator
Newdawn profile image
NewdawnAdministrator
CLLerinOz profile image
CLLerinOzAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.