Allergic Reaction

[Bluejacket]

I started taking Imbruvica recently, but had to stop after only 11 doses because I developed dark spots first on my face and nose but then a lesion on my inside cheek and tongue. The are treating the lesions and then will discuss our next move. Anyone have similar experiences during their start ups?

[Hoffy]

I had some rashes but they went away for the most part.

I have heard of mouth sores.

Maybe another drug like ACP196 or Venetoclax could be an option.

[Bluejacket in reply to Hoffy]

Thanks for your reply. I see the oncologist early next week to discuss options. I'm hoping to maybe try a restart with Imbruvica with a reduced dose to let my body adjust and then work up to a full dose. We'll see what they say.

[tominyc]

When I first started Imbruvica, I developed horrible bleeding sores in my mouth and on my tongue. My oncologist cut my dose from 3 pills a day to 2 pills a day, and that's been my dosage for the past year. Some other side effects that I had- terrible rashes on my legs that began with swelling of my feet, ankles and calves. I still have some rashes on my lower legs. but use lotions and if very bad I take Benadryl. My platelets are still very low, so bruise easily. You may experience fatigue. My oncologist told me to take the pills late evening, because of possible fatigue. I also have some vision problems, which my oncologist warned me about, but said that was temporary.

I can tolerate the rashes, etc. as Imbruvica is working for me. Perhaps just cutting your dose will work for you, as it did for me.

[Bluejacket in reply to tominyc]

Hope so. We'll hang in there and deal with the side effects to hopefully enjoy the rewards. Thanks for the info. I will mention it to my doc and hope he agrees to try a reduced dose.

[tee10]

When I started Imbruvica 9 months ago I started with 2 pills daily and after 2 weeks they had me start doing 3 and have been on 3 every since and doing ok. I have a few side effects that are tolerable and come and go.

@ Bluejacket how did your appt go? They put you back on or are you trying something else?

[Bluejacket]

Healed up in 5 days. They put me on 2 a day and said when my body develops tolerance we will go back to 3, so good news I think. Thanks for asking.