Ibrutinib and Heart Palpitations: What Users Say

• Rob...
• Taken for 1 to 6 months
• April 12, 2017

Ibrutinib for Chronic Lymphocytic Leukemia "I began this medicine in October 2016 (age 62) and saw immediate results. Having lost a sister to leukemia just 9 months prior to my own treatment, I decided to begin with this fairly new FDA-approved regimen for line treatment. The results were amazing, lymph nodes began shrinking immediately, and with 6 weeks, none were palpable! Due to onset a-fib, my oncologist would like me to switch to a clinical trial that is using the next generation of the ibrutinib medication, which is showing fewer side effects, particularly with a-fib. The next generation of this drug is showing fewer side effects, particularly with a-fib, so I am considering."

• Cka...
• February 4, 2020

Ibrutinib for Mantle Cell Lymphoma "My 78-year-old mom was prescribed Imbruvica 420 mg 1x per day in Jan 2020. She’s in the hospital with a-fib, dizziness, blurred vision, skin lesions, pneumonia, upper respiratory infection, etc. After reading the insert that comes with it, I checked off the side effects 1 by 1 and couldn’t believe it. I pointed out the effects from the info insert and the testimony via this page and said to immediately take her off. She went into uncontrollable a-fib two nights ago and is literally fighting for her life. They will drain fluid from her again. I don’t think that we should have to be the professionals and solve the problems. I’m so disappointed with her oncologist and have no answers as to how and if this will get turned around. It’s so heartbreaking that the patient is led to believe this is the fix-all drug. We were told it’s 69% effective. So glad it works for some people but so disgusted that it’s taking people’s lives and leaving my mother in this condition."

• Bob...
• March 16, 2019

For Chronic Lymphocytic Leukemia "Been on Ibrutinib for over 2 years. My lab work is normal after starting with a hemoglobin of 4.2 and all lymph nodes involved. One year prior to diagnosis, all lab work was normal. Have had none of the expected side effects, but have had A-fib, cracked nails, infected nails, continued tiredness, and shortness of stamina. Have had one severe leg cramp, but I'm not sure that's related. Could be I've already lived longer than I thought I would and am so grateful for Ibrutinib. If any researchers are reading... Thank you."

• pat...
• Taken for 2 to 5 years
• April 29, 2023

Ibrutinib for Non-Hodgkin's Lymphoma "I developed afib, high blood pressure, dizziness, tiredness, and slightly blurred eyesight. I can only take 1/4 dose as I had an allergic reaction to the full dose. It appears to have slowed the progression of the lymphoma. I depend on the Pan Foundation or Johnson and Johnson to help with the price of the medication, as I also have infusions every 8 weeks at $963."

• Hel...
• Taken for 2 to 5 years
• April 18, 2025

For Chronic Lymphocytic Leukemia "I take 420 mg daily since June 2020. Overall, it’s been a reasonable experience. I had some side effects initially, such as atrial fibrillation and lots of infections. Five years in, I’m stable, with just some pains and lead a relatively normal life in retirement."

• Del...
• Taken for 5 to 10 years
• June 23, 2023

Ibrutinib for Chronic Lymphocytic Leukemia "On Imbruvica for almost 7 years. I had to do 2 cycles of RCHOP first, as Imbruvica was a second-line treatment. It was very effective at reducing my tumor load and keeping it away with 420 mg a day. I had side effects that were managed for most of the time. The neuropathy, diarrhea, heart palpitations, and lung damage were the most persistent. Fifteen months of bleeding from the lungs was the reason for stopping Imbruvica."

• Ann...
• Taken for 2 to 5 years
• May 31, 2024

Ibrutinib for Chronic Lymphocytic Leukemia "Brought white blood cell count back to normal. On it for three years. Today I found out I now have atrial fibrillation!"