Starting Imbruvica

[oso7672]

My DR wants me to start 1 pill @ 420 mg of Imbruvica but I'm concerned about the side effects. Should I start with that much or 3 pills? should I be concerned about the side effects?

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i started 420 mg daily on jan 10 2019. so far so good. 420mg dose is the recommended amount from the manufacturer for cll

[cajunjeff]

The three pill version of ibrutinb are three 140mg pills, the exact same dose as the one pill 420 mg pill. The standard dose most start with is 420 mg. Some doctors will reduce that to 280 mg or 140 mg, defending if a person is not tolerant and might benefit from a lower dose. My doctor told me as long as I am tolerating the 420 dose it’s best to stick with it.

Yes you should be concerned with the side effects, but not overly so. You will not know what side effects you may or may not have until your on the medication. Most people starting out report relatively mild and manageable side effects, but some will not tolerate ibrutinib and have to try other drugs.

[oso7672 in reply to cajunjeff]

Jeff, thanks for the info. We are really concerned about the side effects. More so, what time do you take your pill. are you still going to work. any breathing issues. did you take Allopurinol first for a week then during the first week or every day with the IB.

Thanks

[mrsjsmith in reply to oso7672]

Hi Oso,

I have been on IB for about 15 months and only very minor side effects. I take mine first thing in the morning but that is a personal choice. I started Allopurinol a couple of days before starting the IB and only for a month. A lot will depend on whether you have any other medical problems than can possibly be exasperated. I luckily only have occasional sinus problems and that has been fine.

Colette

[cajunjeff in reply to oso7672]

Oso, I take my pill in the morning after breakfast now, with about 16 ounces of water. If I forget, I just take it later, the time of day I take it has not been an issue for me.

I am full time at work. I got off allipurinol for a while but my uric acid got a tad high and they put me back on it.

I had a few headaches the first week, they are gone and I never knew if they were related to ibrutinib or not. I have had a few, non painful mouth blisters, no big deal at all. And I have had some small red skin blotches come and go. The only side effect that has caused me any real problems has been diarrhea now and then, but I just take Imodium for it and overall it hasn’t been a big deal.

I have not had breathing issues. My nodes went away instantly. My spleen shrunk back to normal. My hemoglobin and platelets improved. And my wbc has gone from 250 k or so to 20 k in a year. I am hopeful on my next labs it will be in the normal range too.

So it’s been a good drug for me and I am grateful to have the option to take an oral pill over chemo. Jefferson

[LovecuresCLL]

Hi Oso, I would always listen to your doctors dosage amount. If you are concerned about the side effects (and we always should be) I would bring that up front to them. If you cannot discuss that with them, find a CLL specialist you can. I read you are supposed to drink lots of water with IB. I am hoping you tolerate it well and it’s a success for controlling the CLL. Is this your first therapy?

-LoveCuresCLL

[CLLCalifornia-USA]

Good morning Oso. I have been treated with FR, (no C) BR and now Ibrutinib. FR gave me nearly 6 years of remission, I couldn’t tolerate Bendamustine and now Ibrutinib. I take my 3 pills at 7pm each evening. Yes, I too have thick curly hair as a side effect from Ibrutinib. That is the only side effect so far. I am back to doing all the things I love and I have an immense amount of energy. I started Ibrutinib January 2017. Get a second opinion and weigh your options. Kindness always, Sally

[CLLCalifornia-USA]

My hairdresser has noticed new hair growth also and very curly. My oncologist just laughs and says that everyone would love that side effect, especially at 67. Glad you’re doing well. Sally

[annmcgowan]

Hi I have been on Ibruitinib for 14 months now and am doing well. I have had a lot of minor side effects. All of them have been transient and manageable.

Everyone is different. Some people have no side effects.Lets hope that is the case for you. If you do get any there is plenty of advice on managing them on this site.

Good luck

Ann

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its 2 days later and i'm just reading your post scott. my co-pay for 4200 mg of ibrutinib would be 7000 dollars for that one scirpt for 28 days. i might notice-lol