Cll and Ibriutinib dosage

[120940]

This is a great place to ask questions. My husband has been taking Ibriutinib for 15 weeks and his white blood count is still going up to 300,000. His dosage is 420 mg . How long before it comes down.?

[sllincolorado]

Mine were up at the 3 month appt (12 weeks after start) and trending down by 6 months (24 weeks after start).

[120940 in reply to sllincolorado]

What was the dosage?

[sllincolorado in reply to 120940]

420 but I did switch to acalabrutinib (calquence) after several weeks. Arc of WBC response is similar with both drugs.

[Seok in reply to sllincolorado]

Hi sllincolarado

I’m still off IB since early June, after 20 months. Wondering under what circumstances your dr managed to prescribe acalabrutinib for you?

Seok

[sllincolorado in reply to Seok]

I started IB after 2 yrs of WW. Within days of starting IB I was in incredible joint pain. We tried anti-inflammatories, a week of steroids, and just try to wait it out but I could not handle it (could not really walk). He wrote the script for acalabrutinib and sent if for approval to my insurance Blue Cross. He was surprised but they approved it immediately. So far, so good - numbers are good and I feel good. Was able to do major hiking this summer. FYI, I am 58, unmutated, 17p and all the rest of the not so good markers, so no chemo for me.

[Seok in reply to sllincolorado]

Thanks sllincolorado for your quick reply. This gave me more hope... 🙏🏻🙏🏻🙏🏻

[Hidden]

what level did he start at

[120940 in reply to Hidden]

On July 18, 2019 it was 36.13 wbc.

[Hidden in reply to 120940]

did he have a cat scan that saw a lot of pockets of swollen lymph nodes and swollen spleen. Imbruvica raises the wbc by basically cleaning out swollen lymph nodes and the spleen. if he had a lot he will stay up until cleared out.

[Canuck901]

What where they when treatment started ?

[120940 in reply to Canuck901]

36.13 on July 18, 2019 was the wbc

[Asclepiusone]

Anyone have any experience with vecabrutinib?

[Hidden in reply to Asclepiusone]

i suspect you won't get any more answers than yesterday, too new.

[Asclepiusone in reply to Hidden]

Yea... new here, so just poking around trying to figure out what’s going on. Sry.

[AussieNeil Administrator in reply to Asclepiusone]

IVFN means that vecabrutinib doesn't have much patient experience data yet. If you look at this recent report on the use of novel agents for CLL, you'll see that it isn't even listed: healthunlocked.com/cllsuppo...

[AmericanRonin]

Mine peaked at about 4.5 months and then has been slowly going down for the past three years.

[kids4]

Be Patient..IT WORKS

[120940 in reply to kids4]

I am in Texas and have a wonderful hematologist who allows me to suggest what I know that other cll patient are taking.

[michaelmac]

short answer is ,,,, everyone is different

Not only are our responses different ,,, our CLL/Sll is different to each of us.

out of curiosity ,,,,,what country are you in ????

If you are seeing a CLL specialist Hematologist ... you/he should be just fine.

As has been said here and elsewhere your relationship with your Doc is important ,,,, but, no harm in asking and informing yourself.

Good luck to you and I hope everyone is doing as well as possible

74 year male USA

frontline clinical trial

relapsed on Ibriutinib on 420 reducing to 280

[120940 in reply to michaelmac]

What do you mean relapsed at 420 and reduced to 280.

[michaelmac in reply to 120940]

Hi

I should have put a comma or something in between the relapsed and on IE:

relapsed ........ on Ibriutinib on 420 reducing to 280

So what I meant was/is ,,,,

I have relapsed (after finishing the frontline trial ) and my doc put me on Ibriutinib stepped up from 140>280>420 I'm having a problem with the 420 SSsssoooooooooo he has reduced me back to 280.

I started a post on this today but got interrupted and lost it, if you click on my photo I think you can see my posts,if your interested.

Also, there are pinned posts you can see to the right of your post ,,, that are others that are ask Q close to yours

Hope this answers you Q ,,,I am not the best writer

Whising everyone the best

m

[120940 in reply to michaelmac]

Thank you. I understand now.