CLL/SLL and Ibrutinib

[DylanPxxx]

I was diagnosed with stage 4 CLL/SLL in December but it took until last week for me to start treatment. Every time I was ready to start treatment the doctor would order one last test which would reveal the cancer in another location and that would change things in the doctors mind and I’d need another test to confirm, etc. I finally started on Ibrutinib last Friday. The doctor settled on Ibrutinib because it has good penetration to the spinal fluid and a spinal tap had shown cancer cells in the spinal fluid.

So far the side effects on Ibrutinib have been very mild. I’ve felt sick, but not terribly. I’ve also not noticed any improvements in the tumors that I can physically feel, but it’s still early days.

What other side effects should I expect? If I haven’t noticed side effects so far am I in the clear, or could side effects emerge later?

[cajunjeff]

You might have any side effect listed on the label, a copy of which I have linked to for you. The label also lists percentages which gives you an idea of what side effects are more likely to occur. I do not know that anyone at this stage of your treatment can rule in or out any future side effect you might have.

That said, I think for most people the side effects with ibrutinib are mild to moderate and tend to subside over time.

One of the major side effects of ibrutinib is it can trigger atrial fibrillation. If you do not have any underlying heart conditions, your risk of afib is thought to be less.

You should soon see your nodes melt away. Ibrutinib is to cll what water is to the wicked witch of the west.

The odds are good you will do very well on ibrutinib and insofar as your nodes are concerned, you should be noticing improvement in the firs month or two of treatment. Good luck. Here is the label:

rxlist.com/imbruvica-side-e...

[LynnB1947]

Stage 4 SLL diagnosed in 2013. I've been on ibrutniib since April 2014 - almost 6 years. Wishing you the best.

Side effects for me - muscle cramps, sore joints, frizzy hair, brittle nails, peripheral nephropathy but still doing fine.

[sweetromeet]

My dad started ibrutinib bt had to stop it within 8 days due to internal bleeding and platelet count drop