Ibrutinib at 1 month

Hi,

So it has been a month and 2 days since I started Ibrutinib. My ONC first had me take just 2 pills daily for the first two weeks, the intention was to gauge the side effects to see if I could handle the medication. At day 3 I had one case of diarreah, day 4 joint swelling and periods of fatigue for the first week, but very manageable. Starting week 2, all side effects vanished as did my swollen lymph nodes in my neck and swollen spleen. Incredible difference in just a short time, and I also had a sense of clear headedness that I had not had in 6 months+.

Staring week 3, I went up to the full 3 pills and after two days I noticed marked fatigue but no other side effects except a small rash on my neck (which my ONC said is the Ibrutinib version of bruising, and totally normal). The fatigue went away after week 3 and while there are moments of tiredness here and there, again totally manageable.

At my month check up this past Monday, my numbers showed that the drug was working perfectly, my WBC spiked to 190 which is a great sign and eventually it will slowly level down to normal ranges pre CLL. My Platelets which had dropped down to 78, were now up to 96. Very relieved that that number is spiking upwards. So, for me looks like the drug is working and working well. Should I experience any unusual side effects or symptoms I will add a post, but for now my next check up is not for a full month, so I will report back where things stand then. Best of luck to everyone.

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Congrats Mellyjake! I'm on a similar trajectory, now 6 weeks on Ibrutinib.

kim

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I’ve been on ibrutinib since January and I feel great. No side effects and an amazing amount of energy. For me it has been a miracle drug. Glad it’s working well for you also. Sally

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17 months in and my counts have been essentially normal for nearly a year. Side effects for me have been pretty much non existent. No joint pain, notvas much energy as before but heck I'm 67 years old and it's hard keeping up with 30 or 40 year olds.

The most troublesome side effect for me has been the very brittle nails that goes with Imbruvica and the painful split skin ( cuts) on fingertips.

Keep nails short and apply Hard as Nails ( yes guys you can paint your nails) and keep lotion close by for your hands. I also apply lotion at night and then wear surgical gloves

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Well done keep us informed of your ongoing progress,

Ann

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