Ibrutinib reduction: hello. good evening. I... - CLL Support

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Ibrutinib reduction

Bixilon profile image
12 Replies

hello. good evening. I would like to know if this has happened to anyone. since March I reduced the dose of ibrutinib. from 420 to 280. and since then. I have a cough. 2 months ago constant fevers. And I don't feel as good as before. Could it be the effect of reducing the dose? 8 months of one less pill but not as good as before.Tank you

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Bixilon profile image
Bixilon
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12 Replies
LeoPa profile image
LeoPa

Did you see a doctor about it? What does he say? Did you go through any infection? Did they examine your sputum samples? Did they draw blood for examination? Maybe you need to see an ORL doctor or a pneumologist. Do investigate. Don't wait till this goes away.

Bixilon profile image
Bixilon in reply to LeoPa

I have gone to an infectious disease specialist, a pulmonologist, a clinical hematologist. They have done laboratory studies that I did not even know existed. Contrast-enhanced whole-body computed tomography. I have no explanation. which gives a remote possibility that he had covid 2 months ago and this is a sequel. thanks for answering

Northland profile image
Northland

Interesting. I just had the conversation with my Hematologist about reducing my 3 pill per day (420mg) dose of Ibrutinib. He said no, my blood tests were perfect and the maker suggests the dosage needs to be 420mg per day so any change might effect my quality of life and life expectancy. I was diagnosed with CLL in September 2019 and started Ibrutinib April 23, 2020. I am now 63.

Bixilon profile image
Bixilon

Thanks for sharing your experience. I find it interesting

Mprm profile image
Mprm

I started Ibrutinib on full dose in January 2020. Due to muscle cramping and pain, my provider reduced my dose to 280 mg about a year ago. The cramping improved and I have had no additional problems from the reduction. However, there can be no doubt that these medications can have varying side effects on different people.

CCgroup profile image
CCgroup

I did exactly the same reduction, with no effect whatsoever, including blood work as well. However, I had a minor operation recently and I asked about discontinuing ibrutinib before the operation and my oncologist said no, I was already right at the minimum. As my platelets were OK the surgeon said it was not necessary to stop the ibrutinib and did the operation anyhow.

Bixilon profile image
Bixilon

I'm happy for you. lucky

Ginajetta profile image
Ginajetta

I started imbruvica at 280 September 2018 with WBC over 300,000 going up to 697,000. I’m unmutated Cd38 and trisomy 12+. My wbc now 19,000 .. it has very slowly gone down . Other blood counts normal. Still on imbruvica 280 and I it keeps working. Diagnosed 2007 started treatment 2018.

Yorkiepinkpophocus profile image
Yorkiepinkpophocus in reply to Ginajetta

Hi I have a question did you have any Blood Pressure issues with Imbruvica I just started taking it 3 weeks age just 2 side effects sore mouth and my face is red and what looks like a pimple on in awhile like acne what iam worried about is the high BP and Atrial Fib so far I’m ok but it scares me

Jemorgen profile image
Jemorgen

I started on 420 mg ibrutinib in Sept 2020 and about a year later I reduced to 280 with no problem. I’ve been wondering about a further reduction but somehow 140 seems extreme. I’m back on the site looking for more information.

Bixilon profile image
Bixilon in reply to Jemorgen

I would also like to reduce to 140mg but I don't feel like it and my doctor considers that it is not convenient

Jemorgen profile image
Jemorgen

my onc and talked about before but I wasn’t ready. I read another recent post on this also which was very positive so I think I’ll bring it up at my next appointment.

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