Hi everyone...I've had CLL since 2008. Had my first treatments 2012. Just started on this oral treatment today.
I'm curious if you've been on it how many mg you take a day. And did you loose your hair?
Hi Susan. I've just been on Imbruvica/ibrutinib for 9 weeks. But it's working really well and rapidly in my case, and with no apparent side effects so far (unless the muscle spasm in my back is related... but it may not be). No hair loss caused by ibrutinib, as far as I know. I am taking the standard 3 pills daily (420 mg).
Good luck to you!
Thank you Kim...that's encouraging ❤
Hi, Susan - I started ibrutinib nearly 2 years ago, the standard dosage (3 pills daily - 420 mg) I did start having hair loss after a couple of months. I've always had very thick hair & it got pretty thin- but - it has since stopped thinning and after a year had pretty much grown back. I still seem to "shed" a bit more than before beginning treatment, but maybe that's age-related (I'm nearly 65).
Thank you Turkey 2...good to know. I'm also 65❤
thanks for sharing your hair loss experience, turkey2. that's good for me to know since I am in early days still on ibrutinib. if hair loss does start, i won't worry so much, knowing it will (hopefully!) grow back at later point.
I’ve been on Ibrutinib since 15th Feb 2017, so around nine months as part of a clinical trial that includes it. I am on 420mg which is three pills per day.
It is my understanding that for CLL 420mg is the normal dose, although some people are on a reduced dose, mainly due to side effects they experienced.
No hair loss experienced for me as a result of taking it.
Thank you Rob, good to know😎
I've been on it five and a half years, three pills a day, no side effects and hair now thicker and stayed normal colour rather than turning white. Nothing to worry about, a life saver, all blood levels normal.
Thank you that is very encouraging ❤
So encouraging! Thank you for sharing this!
Wonderful news. I'm on imbruvica for 3 months. Started getting cramps in hands and feet but other than that feel good.
I already have the cramping before starting Imbruvica was hoping it would help, we'll see...thank you for sharing ❤
Eating mustard or dill pickles helps with the cramping for my husband. Just an FYI. Hope that helps.
420 MG daily. Hair still where it should be. I have been on it 15 months. Severe bruising is only side effects.
Richutchins, thank you for sharing 😎
I've been taking Imbruvica for 18 months. The only side effect I've experienced is brittle and chipping fingernails and courser hair. I have NOT lost hair due to this med.
Cll2013, thank you that is encouraging ❤
Susan, I've been in IB since September 27, 2017 and so far I haven't experienced any side effects. I have noticed that the tips of my fingers seem a little dry but that's about it.
Have been on ibrutinib 140 mg x3 per day for one year. No side effects but my poker straight hair is now very curly.
Lol I hope that's what I get for a side effect😝
Going into my third month of Imbruvica (IB). Side effects is nothing that would stop the standard 3 pills daily (420 mg).
Side effects for me are:
- Increased blood pressure. Primary Doc increased my hypertension meds.
- Increased gerd/acidic stomach. Primary Doc suggested taking a quart of water with the IB at night before bed. Better now.
- Chapped finger tips. I take a good lotion nightly and daily.
- Tiredness significantly improved.
- Lymph nodes and enlarged spleen much better.
- Blood lab numbers better and improving.
I'm good confidence using the IB based on the above items and from the CLL support group that I attend monthly with others on IB.
I just started last month. I haven't lost any hair yet and take one 420mg pill daily.
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