imbruvica and no side effects 2 yrs strong

[Rhodeguy]

i was diagnosed in 2017 cll.I been on imbruvica since march 2022 and i must say my numbers are great,im healty,work every day and see my oncologist every 3 mos.

[Spark_Plug]

First, I'm glad you've got a good fit. I checked your bio, could you elaborate on what your markers are and what lead your doctor and you to choose this as the right time i.e. other B symptoms etc.?

[CCgroup]

That is excellent, and there is a good chance it will continue.

When I was diagnosed almost 6 years ago the health system in Costa Rica tried a number of things including a series of 5 infusions based on rituximab and chemo pills. None worked. A retired doctor friend in Canada recommended I try ibrutinib. Within 6 weeks the lymph nodes had disappeared. I still take two 140 mg pills a day and have led a perfectly normal life. Another plus was once it was established that ibrutinib worked the health system had to pay for the ibrutinib.

May it work as well for you!!

Dan

[Big_Dee]

Hello Rhodeguy

Glad to hear your good word for CLL treatment. Blessings.

[Tupelomojo]

wow. I have always heard about all kinds of side effects with that medication. At any rate, my doctor is going to put me on O+V Whenever I start treatment. My white cells are at 75. I feel good and the rest of my tests are within range. At least For now

[wilhoitaz]

I haven't posted here for a while as I had no side effects until 2 years into my treatment-also 2 Imbruvicas per day- within the last month I had my 2nd Mohs surgery for issues on my forehead-first 2017 small cut made and recovery with minimal effects-this one was different-my incision was much bigger-could of fit my thumb inside-the plastic surgeon required 30 stitches to close wound --followed by total black eyes that covered most of my face-

I researched possible causes and found 3 possibilities:

1. working in sun all my working life

2.Electrical explosion 1985 that may of left seeds

3.Have found that Melanoma may be possible side effect of Imbruvica

Anyone else?

Thank you

[AussieNeil Partner Administrator in reply to wilhoitaz]

It's not that melanoma is a possible side effect of Imbruvica/ibrutinib, rather, it's that there is a higher risk of skin cancers with CLL and the risk doesn't reduce while being treated with Imbruvica/ibrutinib or other BTKi drug.

There's an increased risk of bleeding with surgery, while under BTKi treatment, hence the bruising causing black eyes. (There's a kinase in platelets and BTKis can inhibit this in an off target effect, so that clotting effectiveness is reduced.) Did you stop taking Imbruvica prior to your skin surgery?

Neil

[wilhoitaz in reply to AussieNeil]

No, didn't stop Imbruvica--same procedure in 2017 with minimal issues-like removing a splinter--so I was surprised with the effects from recent mohs --first one I was doing 3 caps a day-this recent one 2 caps per day--will have a video appointment with my oncologist next month.

unfortunately in briefly explaining my first week of recovery I created a distraction that I also wasn't expecting.

I was interested in if anyone that was diagnosed with melanoma wondered if it may of become a side effect of Imbruvica.

[brees in reply to wilhoitaz]

My husband has been on Ibrutinib for a little over 4 years. He developed afib from the ibrutinib. They then dropped his dose overtime from 3 pills a day to one a day, but other than that has felt pretty good. Last year, he also had a surgery for skin cancer that he had a spot on top of his head the size of a golf ball that they removed and then had to do several stitches to stretch his skin back together. He had to be off of the ibrutinib 3 days prior and 3-4 days after and his counts started to climb after this. He just started last week the O+V. 😔