3 weeks on Ibrutinib

[Marber]

Saw my doctor today after 3 weeks on ibrutinib. WBC doubled again in 6 weeks and is now 101.70 up from 53. Needless to say I am a little nervous but my specialist doctor was not overly concerned. She says it takes time for the counts to go down. She will see me again in 4 weeks. Side effects from the drug have been minimal. I have some nausea that wakes me up about 3 hours after taking the 3 capsules; and I had one bout of diarrhea that lasted 2days. Very manageable especially if the numbers start to come down.. has anyone else had such a rise in white blood cell count?

[schmitthj007]

Marber not at all concerning and expected on BTK inhibitors caused by redistribution of lymphocytes from your lymph nodes and spleen into your blood stream. You may have felt a markedly decrease of your lymph nodes. The medication is doing exactly what it is supposed to do. I had as many others on this forum the same experience.

All the best on your journey

Heiko

[Marber in reply to schmitthj007]

Thanks for your positive encouragement.

[PlanetaryKim]

Hi Marber. That rise in lymphocytes at beginning of ibrutinib is actually a good thing and a sign that it is working, driving the CLL out of you nodes and into your blood stream where it does not survive and reproduce. SOunds like you're doing very well on it. Good luck to you.

kim

[Marber in reply to PlanetaryKim]

That makes me feel so much better. I will certainly remain patient and. Positive about good results. Thank you.

[cajunjeff]

The rise in your wbc is normal. It can take a year or more for your wbc to normalize. The fact it might take a long time has little impact on outcome. It’s not a bad sign at all for wbc to jump up in the first months on ibrutinib and not a bad sign that it takes a long time to normalize.

[Kokobean]

The rise in lymphocytes is pretty common. My husband went from about 100,000 to nearly 200,000 and now 6 months later down to 24,000. It’s actually a sign the ibrutinib is working. I understand it’s disconcerting though.🙏

[Marber in reply to Kokobean]

Thank you for your encouragement. I’ll hang in there for sure!