Ibrutinib and wbc count

[lronnebeck]

How do i know when it’s working?

[PlanetaryKim]

Lymphocytes will go up before they go down. But they will then go down - probably to normal. My lymphocytes are below normal. And that's the ibrutinib working. Most people can also tell ibrutinib is working right at the start of treatment by rapid reduction of lymph nodes.

[Hidden]

I started Jan 10 at about 450,000 wbc and 440,000 alc. both numbers went up about 20,000 in first couple of weeks but i actually felt better within a week. they dropped slowly for about a month and then a sudden 200,000 point drop for each. today as of blood test last week wbc about 60000 alc about 50000 I should have included that i am b-pll

[Justasheet1 in reply to Hidden]

Ivotedfornixon,

Thanks for your reply to Ironnebeck. As my WBC is over 200k now without any B symptoms, I see this could continue. What triggered treatment for you?

Jeff

[Hidden in reply to Justasheet1]

I have de novo b-pll. what triggered it was having 355,000 wbc found accidently dec 20th 2018 and growing to 450,000 2 weeks later . In august 2018 i had a 14,000 wbc. B-pll is a rapid subset of cll. It is very rare. However with my lousy markers 17p deleted and p53 abnormal-my oncologist put me on imbruvica right away and got me an appt 2 weeks later at dana farber for a stem cell transplant consult. I don;t think she thought i would respond so well to the Imbruvica. How long it will work-i don't know the stem cell transplant is now an IF and not a WHEN.

[Justasheet1 in reply to Hidden]

Wow, that’s quite a story. Sorry. However, you couldn’t do much better than Dana Farber.

Hopefully the ibrutinib keeps you going for a long time.

Have they considered adding Venetoclax to it?

Jeff

[Hidden in reply to Justasheet1]

i mentioned it to my local oncologist. She said it would be the next drug if needed. B-pll is so rare i'm not sure what she will do. She's about 50 years old. I'm the only b-pll she's ever had. I'm the only b-pll the entire practice (some also blood diseases) and some other kinds of cancer doctors in bullding(Damour cancer center) springfield mass. I saw 2 doctors also at dana farber. the transplant doctor never had a b-pll. the other doctor said he had in the past-but who knows for sure.

anyways they are treating me as a high risk cll since no drug special for b-pll

[Justasheet1 in reply to Hidden]

Then sequential treatment it is. Good health to you 🍻

Jeff

[jdolinger]

Started Ibrutinib about 2 1/2 months ago and initially my WBC went up (as the Hema said it would). Then after about six weeks on each weekly blood test it started back down again. At last blood test the WBCs had already improved substantially (down from a high of 186 to 80). All other test results (RBC, Haptoglobin, Hemoglobin, Retic count, etc) are improving also. Feeling much better and energy level is up significantly. (I actually can take the dog for about a mile walk each day now). Be sure your doc is watching your blood each week until you begin to improve. Best wishes for a speedy recovery.

jack O.

[haposwald]

It’s taken almost 5 months for my wbc to start to decrease! Stay focused and positive it helps before treatment states to now in thousands before 105,367,340,194 and now down to 94k @ 5 months in and so far super happy with imbrutinib! Good luck! I wish all cll docs would talk about the flare period after starting imbrutinib. It’ll go down give it some time!