Imbruvica Good News

[Phyllis731]

Diagnosed with B-PLL (CLL) around Feb 2020...just before Co-Vid. Was on W+W until Dec 2020. WBC went from initial 99K to 357 K and hematologist said it's time to start medication. On Imbruvica 420mg @ 1X day for 2 months now. WBC went from 339K in Jan 2021 to 220K in Feb 2021. No side effects other than quite a fair number of small blood spot clusters (petichae sp??) I have a great doctor who knows her stuff. I'm a happy camper.

[nvrbeold62]

Congrats on the progress! I’m sure this is a big relief.

Curious what led to your B-PLL diagnosis? I assume prolymphocyte numbers grew - and if so, was it from not seeing them before in your lab reports to suddenly appearing and quickly increasing?

Also - did they run flow cytometry when PLL was first suspected?

I ask with strong interest as I await results from a second/confirmation test to look into a new appearance of “atypical lymphocytes” in my CBC at 72% of my absolute lymphocyte count. The doc also ran flow cytometry - although it seems like maybe he could have waited to see what the path smear showed before jumping to the flow cytometry test.

[Jm954 Administrator in reply to nvrbeold62]

PLL is not always a development of pre existing CLL but can present as PLL at the start so it's probably not the situation that you may find yourself in.I'm hoping your results will be '[normal' again on the next test and that the analyser was having an off day.

[Phyllis731 in reply to nvrbeold62]

I went to ER with arm and chest pain last Feb 2020. Was told I had leukemia...WBC of 99K at that time. Have had 2 bone marrow biopsies and several types of body scans. Spleen is slightly enlarged. It seems each time I go to see doc I get various diagnosis on the paperwork...CLL..Lymphoma Unspecified. But she told me I have B-PLL and she wrote it out for me and started me on the Imbruvica in Dec. As much as I have tried to read up and educate myself, I don't really understand all the cell stuff. So I am taking the docs word for it.Sorry I can't be moe specific.

[Smith123456 in reply to Phyllis731]

as i'm sure you realize by now-very few people actually have b-pll. therefore very few studies with few participants. Most of the info comes from the 'pre novel drug'era. I just think of mine as high risk cll . It's treated like that using the same drugs. there will never be a drug with an actual indication for b-pll. to few to actually get a scientific approval. it's very close to several other one's like mcl,mzl etc. they can usually only use differential diagnosis like mine. They could tell what it was not and settled on what was left.

[Smith123456]

I also have b-pll but mine is de novo. diagnosed in january 2019 with a 450,000 wbc. I am on imbruvica/venclexta/gazyva. 6 months of gazyva finished in november 2020. still taking imbruvica and venclexta. I am not on a trial

[Hidden]

Hello I also have b-PLL and am currently on venclexta and on a path to get a stem cell transplant within the next few months.

[wilhoitaz]

best is yet to come

[joanne17]

I've been on Imbruvica going on 5 years. yes, I get small blood cluster or what ever they are called on my hands. Small price to pay for good numbers and no other Sid effects.

[Phyllis731 in reply to joanne17]

JoAnne, I have quite a few of the blood spots (called patechiae) popping up on hands, elbow area, and above stomache, but I agree...a small price to pay to get WBC count down.