New CLL Imbruvica user, 63, asking for friendly advice please, diagnosed in ‘02 and its finally on the move : -)

[AtTheBeachInDE]

Can anyone share the experience of starting Imbruvica for the first time? How does it make you feel? Any problems? Advice? I’m 63, diagnosed in 2002 with white count at 17000. This year after not rising much all these years it jumped from 33000 this March to 55000 last week and I’m having lots of night sweats — so I will have 4 Rituxan infusions a week apart, and Imbruvica every day indefinitely. Any good words out there please?

Also - Treated and cured of Stage 4 Squamous Cell Carcinoma with chemo and radiation in 2010. After that white count bumped down to normal for a few years, then gradually back up. Was 33000 this March, over 55000 now.

Last PET September 30, 2020 CLEAN.

A bit nervous, recently retired in DE.

Cheers.

[AtTheBeachInDE]

Oh yeah, can I have a bourbon?

[lankisterguy Volunteer]

Hi AtTheBeachinDE,

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Here is a link to the 3,970 previous posts that mention Ibrutinib / Imbruvica: healthunlocked.com/cllsuppo...

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Of the better ones is this : healthunlocked.com/cllsuppo...

And when you are on that page, look for the box labeled Related Posts

*Ibrutinib

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*Ibrutinib

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*Ibrutinib

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*Ibrutinib

healthunlocked.com/cllsuppo...

*Ibrutinib

healthunlocked.com/cllsuppo...

That box is in the upper right column on computer screens or scroll way below on tablets or other mobile devices.

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Len

[AtTheBeachInDE in reply to lankisterguy]

How kind of you, thanks. Marc

[country76]

Congratulations on curing your skin cancer. Ibrutinib worked well for me bringing most of my labs to near or normal range and shrinking my spleen to normal.

I switched to Alacabrutinib due to side effects. Many patients don't have a lot of side effects and do fine.

Talk to your doctor regarding bourbon. Your Ibrutinib will be metabolizing in your liver competing with bourbon.

While I was on Ibrutinib my borderline blood sugar levels went to normal, however, my thyroid meds stopped working.

[lankisterguy Volunteer]

Hi AtTheBeachInDE,

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Good job completing your profile.

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You may want to read this pinned post - item 12c to lock / restrict your post to our community. healthunlocked.com/cllsuppo....

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Len

[CM-CA]

Hi, I've been on ibrutinib for a long time - maybe 7-8 years? For awhile I had some of the textbook side effects - like loose stools - but they went away. I don't have any noticeable side effects now.

Good luck!

[AtTheBeachInDE]

Thanks for the kind reply.