Ibrutinib for Chronic Lymphocytic Leukemia User Reviews (Page 2)

• Joe...
• Taken for 2 to 5 years
• November 12, 2020

"Update of my October 14, 2019 comment. I still take the (2) 140 mg Ibrutinib every morning with no additional medication. I still feel great every day. As a matter of fact, I feel as if I were 30 and my age is 75. The doctors in the VA see me every 3 months and my kidneys (in stage 3) have not decreased in function. I feel very sad reading some of the results other people have had. I still have NO side effects."

• Bob...
• March 16, 2019

"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."

• Sad...
• Taken for 2 to 5 years
• August 24, 2021

Ibrutinib "My husband did very well on Imbruvica, taking one pill three times a day. When he was switched to the same dosage once a day, within months he had a VF heart attack, went on life support, never recovered, never had cardiac issues, or was told to get a cardiologist. High BP and smoked. I suspect the med but don't know for sure. My advice is to get a cardiologist if you take this medication."

• Anonymous
• Taken for 1 to 6 months
• February 2, 2021

Ibrutinib "After 76 days on Imbruvica (420 mg), my prostate gland was swollen to the point where urination was almost impossible and my colon was blocked. Also, there was swelling felt in my lungs and heart. At times after taking the tablet, I could feel my heart beating against my sternum. The day after I stopped taking the drug, the swelling subsided. I no apparent problems existed on the first two lots of the drug (56 days), I attribute the probable cause to a contaminated lot. After three weeks, my bodily functions seemed to be back to normal. On the follow-up PET scan, no improvement was seen on lymph nodes."

• 50...
• Taken for 1 to 6 months
• December 9, 2020

"Honestly, I felt like I was close to slipping away. My white blood cell count was over six times the normal. I no longer had any energy to walk the treadmill. I had gone nearly deaf in one ear and was having trouble breathing at night. I had lost 30 pounds in six months. After just five days on ibrutinib, I started to feel some better. After five months on this, my white blood cell count is normal. I've gained most of the weight back that I lost. My blood pressure did raise 20 points, the only side effect I had."

• Tan...
• Taken for 1 to 6 months
• April 25, 2019

"My dad was diagnosed with chronic lymphocytic leukemia (CLL) 6 years ago. 2 months ago, switched from chemotherapy to targeted therapy (ibrutinib). His blood tests, like hemoglobin and platelet, got better over time, and he was happy. But his heart condition got worse over time, and 15 days ago, he suddenly passed away from a heart attack. I guess heart attacks and heart problems are a repetitive theme in patients who consume ibrutinib and CLL. My beloved dad :("

• Tex...
• February 1, 2018

"Started treatment at VA in Houston about 6 weeks ago. Lymph nodes back to normal in 1st 2-1/2 weeks. 5th week of treatment started feeling flu-like symptoms. Got worse over the next 2 weeks. Visited with hematologist a few days ago. Dropped from 3 pills daily to one pill daily. I bounced back in one day. Lots of energy and no more body aches/pain. Night and day difference in a very short time span."

• Anonymous
• Taken for 5 to 10 years
• September 25, 2023

Ibrutinib "It helped my condition immediately. Previously I've had FR and BR treatments. I take it after dinner around 6:30 pm with a full glass of water. My only negative side effects are brittle nails with ridges. I've taken it for 7 years and 9 months. I'm a 71-year-old female with CLL/SLL."

• Mik...
• Taken for 2 to 5 years
• August 2, 2021

Ibrutinib "I've been on it a little over two years after relapsing from FCR in 2014, was in remission till May of 2019. I haven't had much in the way of side effects, mouth sores that can be controlled with mouthwash. My counts are all in the normal range, and waiting on the results of an MRI I had for another issue to see what my lymph nodes are looking like."

• SST...
• Taken for 5 to 10 years
• April 12, 2025

Ibrutinib "Been using Imbruvica 5 years has brought white count down from 206.3 K/µl in 2021 to 8.0 K/µl in 2024 at 420 mg daily. Feel good overall. I did about 3 months of first taking the Rx, start getting mouth and skin sores, Purpura I was told, more of a blood blister to me. Was given 800 mg of an antiviral called Acyclovir, which helps. Still get a few, nothing as before. My CBC tests are within limits, with only one item slightly over max at 15.1% vs [11.>15%]. Feel pretty good, little tired, have other old age >70+ issues, sometimes hard to say what's the cause of my discomfort."

• RWB...
• Taken for 2 to 5 years
• September 25, 2024

Ibrutinib "My 4th year on Imbruvica 280 mg, early on I had weakness, shortness of breath, musculoskeletal pain, diarrhea, but after the first year, these effects subsided. Now on my 4th year, I'm having some peripheral neuropathy and severe bruising and a slight increase of WBC. But all said, the drug is keeping my CLL in check."

• rcp...
• Taken for 2 to 5 years
• July 15, 2024

Ibrutinib "I took it when I was first diagnosed with CLL in 2014. It was the third medication I tried, and it worked very well for me 10 years ago. I was in remission from 2018 till 2023 when my CLL became active again. I tried various new meds that did not work well. Therefore, I asked my doctor to try Imbruvica again. I took it for 4 months, and it stabilized me. Then, I started having neuropathy all over my body, especially my feet and legs. It hurt to walk on my feet, and my legs felt very painful and heavy. My doctor took me off it again in May 2024. Then I began night sweats and felt very tired all the time. He put me back on it, and I broke out in boils. So I stopped taking it as of July 2024. I guess it no longer will work well for me. But in the beginning, it saved my life!"

• Ray...
• Taken for 1 to 6 months
• February 22, 2024

Ibrutinib "Thus far I have done well on Imbruvica. My swollen lymph nodes have been reduced by almost 100%. I am on week 5 and am in the early stages of taking the medication. I have had one mouth sore which cleared up and has not returned. I am fighting a bad chest cough. I see my doctor tomorrow."

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

"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."

• hra...
• Taken for 6 months to 1 year
• November 5, 2021

"This medication caused my dad to have a heart attack. I hadn't even considered talking about it in review form or on a forum until the commercials for this medication started to air. I also don't want this to be a reason not to try this medication, as for my dad it was truly so promising. But I think it is important to know that the side effects are a real potential, and he had them all: tremendous fatigue, chronic dry mouth, and, worst of all, feelings of AFib. His doctor, a nice man of course, felt strongly that he should stick with the medication despite the side effects and that they could treat those side effects separately, also saying that my dad's heart looked normal and to be working fine. My dad knew something wasn't right but trusted his doctor and kept on taking the medication. A few weeks later, he had a sudden and major heart attack in the middle of the night, leading to his passing. My biggest takeaway is to trust your instincts. Don't suffer the side effects."

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

Ibrutinib "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."

• par...
• Taken for 1 to 6 months
• February 9, 2025

"I have been using Ibrutinib/Ibutigen 3 x 140 mg every morning regularly for the past six months to treat chronic lymphocytic leukemia. It has helped my PCV, which was originally low, to rise to 45, which my doctor considered very good. I also feel healthier. I eat well and sleep better. But I noticed sores/rashes on my body. Furthermore, I experience weakness in my thighs and pain in my lower back. I feel this may be due to spondylosis that I have been diagnosed with. The back pain, as usual, is cured with pain-killing tablets. Overall, I have benefited health-wise from the drug, and I use this opportunity to thank the developer/manufacturer of the drug."

• Joe...
• Taken for 2 to 5 years
• October 4, 2022

"Second update on my CLL condition. Last November, I went for my colonoscopy, and when they monitored my heart, they found I had a-fib. They consulted my oncologist, and he told me to stop taking the (2) 140 mg ibrutinib pills. Since then, I've been seeing the oncologist every (6) months, and we both realized I am in remission. Still no side effects. I am 76 years old, used to jog for decades, and still take power walks daily. JUST FEEL WONDERFUL."

• Jin...
• Taken for 6 months to 1 year
• May 13, 2023

Ibrutinib "I was diagnosed with CLL in 2013. Treated with Rituxan and Bendamustine. Went into remission but CLL returned in 2022. The oncologist prescribed Imbruvica 420 mg daily. My WBC level is now in the normal range. I suffer a great deal from rash and fatigue since my hemoglobin level and red blood cell count are below the normal range."

• May...
• Taken for 1 to 2 years
• April 1, 2025

Ibrutinib "I was diagnosed with CLL in May 2007, after not feeling well for nearly a year. I went on the sit & wait program. In March 2016, I started my 2nd round of Bendamustine & Rituximab, but was only able to get through 5 rounds. It was clear I wouldn't make it through a 3rd round. February 13, 2022, another trip to the ER, this time for upper chest pain. Coming out of CT, I officially had a heart attack. Doctors inserted 1 stent for a 99% blockage. I thought the pain was from all the swelling in my lymph nodes. My lymph nodes were always the first indicator. This time, the lymph nodes were much larger, egg to large orange. I was trying to hang on till my appointment at the end of February. Two weeks later, at my regular oncology appointment, my oncologist put me on the Imbruvica 420 mg. The Imbruvica was working great! Mid-July 2024, I got through the first of 7 excruciatingly painful granulomas in my mouth. In February 2025, 3 days shy of 2 years, I was told the Imbruvica was the cause. Stopped."

• rsp...
• April 17, 2016

Ibrutinib "My husband took 3 Imbruvica before bedtime and died from sudden cardiac arrest the next morning."

• Gen...
• Taken for 1 to 6 months
• March 25, 2017

Ibrutinib "Shrunk lymph glands in the back of the neck. First week of taking 3 capsules a day. Second week, swollen glands in armpit are gone. Minor side effects."

• Poo...
• July 7, 2017

Ibrutinib "My husband took 3 Imbruvica before bedtime and died the next day from sudden cardiac arrest."

• Edd...
• October 27, 2016

Ibrutinib "Medication has effectively arrested my father's CLL. From 140,000 WBC to 5,000 within two months."

• Nic...
• January 24, 2017

Ibrutinib "My 78-year-old mother was taking this, and in her third month she had vomiting one day, back and neck pain for 3 days, then passed away in her sleep. Didn't get a chance to lower the dose."