First line

[Blallen]

Started imbruvica 11 day ago , had my first CBC today and my wbc was 330 hemoglobin was 9.5 and platelets 66. I know they say it gets worse before it gets better, does anyone know what the turnaround time might be?

[TimHB]

My numbers spiked during my first two weeks of treatment with ibrutinib (and obinutuzumab) but started turning around in week 3. Now in week 7, they're still moving in the right direction and are down substantially from where they were before treatment.

[Blallen in reply to TimHB]

Thanks Tim for your info

[PaulaS Volunteer]

Hi Blallen,

I see this is your first post, so welcome to the forum.

You're right that with Ibrutinib, things may appear to get worse before they get better... That isn't the case with everyone though, and people's responses are very variable. No one can predict how it will be for you, but here is my story.

I started Ibrutinib in early October 2017, and after some initial side effects (which lasted about 6 weeks), I did well. The swollen, painful joints went back to normal, excess fluid drained out of my puffy hands and ankles, and cracked fingertips healed. I thought I was over the worst and things would be OK from then on. I talk about this in more detail in my earlier post healthunlocked.com/cllsuppo...

My bloods were slow to respond though. Before treatment, my ALC (absolute lymphocyte count) had been over 500 (thousand). A few weeks after starting Ibrutinib, it rose to 630, then slowly started to drop – staying in the 400s for several months. It wasn’t till much later that the lymphocytes started dropping in bigger numbers. I was very pleased when in April this year (6 months after starting Ibrutinib), my ALC was down to 273. And at the last count it was 182. Still a long way to go, but getting under 200 felt like a milestone - a great relief.

My haemoglobin was also slow to pick up. It was 96 (same as 9.6 in other ways of measuring) before I started treatment, but after starting Ibrutinib it dropped to 88. It hovered around the 80s for a few months, then slowly started to creep up. Last count was 108 – better but still not good. My platelets and neutrophils have been fine all the way through.

My haematologist was surprised at how slowly I was responding, but at least it was going in the right direction.

So, that's been my experience. I've also had reoccuring side effects that have been very hard to deal with, but that's another story.

Not everyone gets side effects. In fact my haematologist told me that 70% of people on Ibrutinib don't get any side effects, and of the 30% that do, most find the side effects pass with time, some learn to live with them, and he reckoned only about 5% have to stop the drug because of side effects. I'm not sure where he got those figures from - he may have just been referring to his own patients.

Wishing you well on your Ibrutinib journey,

Paula (in the UK)

[Blallen in reply to PaulaS]

Thank you for your reply paulaS

[closh]

You probably know this but the increase we see in our WBC when starting Ibrutinib isn't our counts getting worse (ie it doesn't mean our CLL cells are increasing), it's just our existing CLL cells getting driven out of their comfy lymph nodes and into the blood where they can die off more easily.

I noticed my nodes shrank right down in about a week on Ibrutinib but by ALC count almost doubled and slowly shrank over 3 months until it was still about 100K (not much less than my starting ALC) when some Venetoclax knocked it right down in a matter of weeks.

Graham

[Blallen in reply to closh]

Good info closh

[Redlion]

Hi Blallen, I started IB 5 weeks ago and had a wbc of 85k at start, wk1 148, wk2 55k, wk3 33k wk4 24k. Next blood test is in early August prior to my first check up following start of treatment. No significant side effects and all nodes are virtually gone and no longer visible, spleen more normalised. We are so lucky to be able to have access to this spectacular drug. Good luck with your treatment.

[Blallen in reply to Redlion]

👍