3 Months of Imbruvica update

[12Caine12]

I just crossed the 3 month timeline w/Imbruvica. The big issue I was dealing with was my Neutrophil count was at a critical level of .4. They are now safely in the normal range at 2.3 and I assume they will continue it's upward climb (fingers crossed). My other numbers weren't bad enough to warrant treatment, but they as well have all improved to the normal range. No issues with side effects the past 6 weeks. Read my earlier posts concerning my issues with side effects. Imbruvica has been my friend!

[PlanetaryKim]

Congratulations! Sound like you are on a good path. Ibrutinib worked miracles for me as well for restoring blood numbers and suppressing CLL.

[Canuck901]

Congrats

[annmcgowan]

Well done. Ibrutinib is a good friend to have.

Ann

[zaax]

Mine dropped to 0.6 and apparently if they had dropped below 0.5 they would have had to do something. 2.3 is very near 2.5 (start of the normal range), and you may well even be there now. The only problem is now your full get up and go, we are on lock-down and we can't go for very long walks

[AussieNeil Partner Administrator in reply to zaax]

The start of the normal range varies from lab to lab. My lab sets the lower reference limit at 1.8, quite a bit lower than your lab's 2.5! Above 1.5 to the lower reference limit is considered to be severity level 1, 1.0 to 1.5 severity level 2, 0.5 to 1.0 severity level 3 and below 0.5, severity level 4. Specialists prefer to keep neutrophil counts above 1 5 and if below 1.0, can defer treatment.

Neil

[12Caine12 in reply to zaax]

The lab at my current onc/hem considers 1.5-7 to be normal. Same with my first onc/hem. I'm hoping for a higher number over time. I was in the .4 to.7 range for close to 6 months before starting treatment and I'm just amazed that I never even caught a cold, despite the fact that my wife came down with quite a nasty cold back in December.

[AussieNeil Partner Administrator in reply to 12Caine12]

You have highlighted the importance of including the reference ranges along with test results. Even so, reference ranges only cover 95% of the healthy range of the population serviced by the lab. 5% of the population can be healthy with a test result above or below the reference range limits.

Neutrophils only protect against bacterial and fungal infections, not viral infections such as colds. Healthier levels would help in the event of secondary infections e.g. pneumonia, so escaping your wife's cold was indeed a great and reassuring outcome!

[josephinef]

That’s great news 12Caine12.

Imbruvica is my best friend also.

💊We’ve known each other for 2years 4months. It gives me peace of mind 💊.

Take care and keep safe.

Happy Easter to you.

Kind regards from Josephine from Australia 🐇🐣🐰

[MN1999]

I had to take a month off of Imbruvica because my ANC dropped to 0.2 after several months on the daily drug. Bummer. However it was nice to have a month with no side effects. I am back on Imbruvica now because my WBC started doubling.

[zaax in reply to MN1999]

What about a lower dose?

[MN1999]

I was hoping for the lower dose, but that didn't happen. I started Imbruvica in Nov 2019 at 420 mg after hospitalization for CLL. The side effects were truly unbearable so the doc reduced the dose to 280. That was unpleasant, but tolerable. I weigh 150 pounds so am a little heavy for the 140 mg -- I have reactions to almost any medication and no other health problems. After a month off of Imbru my ANC came up a tiny bit, but my WBC doubled in a week... so I am kind of between the devil and the deep blue sea. I hope to see if I can reduce the dose eventually. Thanks for asking!

[sllincolorado in reply to MN1999]

Maybe ask doc to put you on acalabrutinib instead? So far has worked well for me without side effects (had severe joint muscle pain on Ibrutinib).

[MN1999]

Thank you! I wrote that down and will ask him on Wednesday during my 1st video call. I have lab work that morning -- getting inside the clinic is like running a gauntlet... Do you know if the dose is the same related to weight?

[sllincolorado in reply to MN1999]

I take the full dose (100 mg twice per day) and I’m a bit under 130 pounds. I enjoyed my first video call - very focused and there was no rush.

[MN1999]

side effects?

[sllincolorado]

None. Which was huge relief since I could not tolerate ibrutinib. I do know that many people on this site have done incredibly well with ibrutinib it just was not going to work for me - could not walk. I do know at least one person on this site did have side effects from acalabrutinib so it is not a magic solution for everyone. I have been on it about 22 months. My blood work is all in normal range. If your insurance company tells you it is going to cost quite a bit of $$ talk to the specialty pharmacy - my current cost is $0. I am on private insurance through work.

[mcp4y2k]

i have been on Imbruvica for a year with very minor side effects and good blood work. Stay stong!