Is anyone taking Ibrutinib (Imbruvica)?

Welcome, @dottyk.
I moved your question to this exisiting discussion about ibrutinib (Imbruvica) that @myla031 not that long ago. Please see:
- Is anyone taking Ibrutinib (Imbruvica)? https://connect.mayoclinic.org/discussion/is-anyone-taking-ibrutinib-for-marginal-zone-lymphoma/

I did this so you can read the previous posts and connect more easily with members like
@myla031 @betnlar @bullwinkle @kippi1950 @ejrquast.

I started Ibrutinib three weeks ago 560mg daily for Follicular Lymphoma transformed to DLBC with CNS involvement. So far coping well main side effect being itchy red rash all over which managed with antihistamine and now fading. Do the side effects become accumulatively worse as time goes by? I am told I must take Ibrutanib for the rest of my life. I am becoming a bit neurotic about exposure to infection, especially viral infection and COVID as it is my lymphocytes that are very low. How did you manage this fear of infection? I don't want to remove myself from the world. Also the bleeding risk worries me though no sign of bruising etc yet, only the measles
like spotty rash and a couple of 1/4" purple blotches on my arms. Can I expect these things to worsen with time?

With mantel cell. P53. I was in remission for 6 months with rituxan and bendemustin. Now it’s back with a vengeance throughout my body. Tumor in my left eye lid and right lobe brain. So I’m on imbruvica to hope to dissolve the brain tumor so I can go into better clinical trials. At city of hope Duarte with specialist tycil Phillips. This is my 7 day of 280 daily oral dose and so far no side effects. Just feel totally awful and weird and spacey with the brain tumor. I’ll be tested next week. If my lymphocytes go up there might be hope. Sigh.

@planaria, how did your appointment go? How are you doing?

Thanks for your support.....I'm still doing quite well on the oral imbruvica,,,,,,,,Day, 19.......no side effects yet....YAY!! I'll have a PET scan and MRI on September 14 to see if the brain tumor is gone.
Then they'll start me on CART T.....My platelets are quite low from the imbruvica, but all else is good.

That's great news, @planaria. As you prepare for CAR-T therapy, you might be interested in joining the discussions in the CAR-T therapy support group here:
- CAR-T Cell Therapy Support Group https://connect.mayoclinic.org/group/car-t-cell-therapy/

Sigh..........My MRI was inconclusive as the doctor at City of Hope does not have the original PET scan taken at a different hospital (bureaucracies!!) and cannot tell if the brain lesion has gotten smaller or bigger. He says patience is called for as the imbruvica therapy can take 3-4 months to show any improvement. The MRI seems to have picked up more brain lesions than the written PET scan report. My daughter is going to the original imaging center tomorrow to pick up the CD and take it to my marvelous City of Hope oncologist. If the lesions are larger or more he plans to add another drug (cant remember the name but the side effects sound hellish). Today is Day 38 of being on the imbruvica and so far, no side effects.......oh bruising, but no big deal...... My stomach feels fine.......I'm tired and a bit loopy but it might be the brain tumors..........Cheers to all

Any update @planaria?

I have been taking imbruvica since August 2020. Started out with 480 mg once a day and I now take 240 mg. I had no symptoms what-so-ever and because of a blood test in 2020 by my PCP it stated my white count was elevated. I am one of the lucky CLL patients as I only have manageable side effects, fatigue is the worse one--so I take a nap. Having a wonderful and caring hematologist also is very reassuring.

Welcome to Connect, @cll2020. Thank you for sharing your journey with CLL. It’s positive stories like yours that can be so encouraging to any newbies out there recently diagnosed with CLL. It’s also great to hear that you were able to reduced your dosage of imbruvica! What are the side effects you’ve experienced?