Doing well on 140mg ibrutinib capsule for past 9 mos

[Bobsterguy]

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 👍👍

[PaulaS Volunteer]

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 in reply to PaulaS]

Thanks Paula. Sounds very similar to my experience. Good luck.👍👍

[clladytime in reply to PaulaS]

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 in reply to clladytime]

Down from 280 mg.

[PaulaS Volunteer in reply to clladytime]

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

[Bobsterguy in reply to PaulaS]

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 in reply to PaulaS]

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

[PaulaS Volunteer in reply to clladytime]

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

[clladytime in reply to PaulaS]

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

lower dose.

[Bobsterguy in reply to clladytime]

Tx

[Bobsterguy in reply to clladytime]

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

[AussieNeil Administrator in reply to Bobsterguy]

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 in reply to Bobsterguy]

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

[Bobsterguy in reply to clladytime]

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 in reply to clladytime]

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 Volunteer in reply to Bobsterguy]

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

[Bobsterguy in reply to PaulaS]

True...IB pricing is crazy

[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 ‘rigors’ that feel like the med is literally ripping out of my bones & that I am about to convulse. So good for you👏🏾👏🏾👏🏾