Ibrutinib User Reviews & Ratings (Page 2)

• Muki
• October 2, 2020

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia "I've been on Imbruvica for only 6 weeks because of bad side effects my doctor stopped the medication. Since I started taking the medication in October 2019 and now is October 2020 still have the diarrhea. I tried all medications and some teas to stopped it. Really don't know what to do."

• Ugo
• Taken for 1 to 6 months
• January 8, 2022

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia "Started taking drug 6 months ago after leukemia came back. After doing research , decided to take 3 pills per day for first month , then 2 pile per day second month and one pill therafter. It was working well for months until following happened A few weeks ago, I hemorrhaged for more than 4 hours after taking just 1 pill. Next day identical thing happened. Had I been on 3 pills a day or taken another pill the following day , I would have bled to death."

• Ckano
• February 4, 2020

Imbruvica (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 resp infection, etc. After reading the insert that comes with it, I checked off the side effects 1 by 1 & 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’s 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 professional 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."

• Bobbie
• 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 short on 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."

• Log
• October 12, 2020

Imbruvica (ibrutinib) for Waldenström Macroglobulinemia "My husband has Non Hodgkins Lymphoma and Waldenstrom Macroglobulemia, he had been treated with Chemotherapy in the past. He was leading a very normal and active life then last year in June 2019 he needed to be started on Ibrutinib, after the fifth month of treatment on the 30th of November 2019 he suffered a cardiac arrest at home. It was the most terrifying thing I have ever witnessed, I had to perform CPR till the ambulance arrived! He was in hospital for six months, he is home now and I am his carer as he suffered a Hypoxic brain injury as a definite result of Ibrutinib! The consultants in ICU said it was a direct result of being on ibrutinib, it is also written on my husband's discharge letter from hospital. I totally blame ibrutinib and now our lives will never be the same."

• JoeP
• Taken for 2 to 5 years
• November 12, 2020

For Chronic Lymphocytic Leukemia "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 some other people have had. I still have NO side effects."

• Mfirmes
• January 9, 2018

Imbruvica (ibrutinib) for Graft-versus-host disease "About me: AML, stem cell transplant survivor with GVHD. How Imbruvica helped: I started imbruvica in 4/17. Prior to taking it I was completely debilitated. After 4 full months on the drug I noted marked improvement. Now I am able to walk, light lifting, and carry out regular activity with much less fatigue and pain. My skin GVHD is not showing any symptoms. It's been a god send! Side effects: I noticed cramping at about 5 months and back & joint pain at 8 months. The cramping became severe however it is managed well with tonic water. The pain is extreme at times - but so far outweighs the GVHD symptoms."

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

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia "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."

• Tano
• Taken for 1 to 6 months
• April 25, 2019

For Chronic Lymphocytic Leukemia "My dad was diagnosed with chronic lymphocytic leukemia (CLL) 6 years ago. 2 month ago switched from chemotherapy to target 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 of heart attack. I guess heart attacks and heart problems is a repetitive theme in patients who consume ibrutinib and CLL My beloved dad :("

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

For Chronic Lymphocytic Leukemia "Honestly I felt like I was close to slipping away. My white blood cell count was over 6 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 6 months. After just 5 days on ibrutinib I started to feel some better. After 5 months on this my white blood cell count is normal. I've gained most of the weight back I lost. My blood pressure did raise 20 points, the only side effect I had."

• Had...
• Taken for 1 to 6 months
• December 6, 2017

For Mantle Cell Lymphoma "My doctors are saying that it's a miracle; had tennis size ball nodes across chest and close to heart. Oncologist, amazing Dr put me on imbruvica in August ,now all tests ,including catscan don't show anything anymore even hardly the nodes ;yippie I'm happy wow I can't still believe that I hardly had any effects."

• Texmarc
• February 1, 2018

For Chronic Lymphocytic Leukemia "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 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 1 to 6 months
• February 2, 2021

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia "After 76 days on Imbruvica (420mg) 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."

• Wife
• Taken for 1 to 6 months
• February 17, 2022

Imbruvica (ibrutinib) for Mantle Cell Lymphoma "Imbruvica was added to my husband’s treatment for MCL after 6 months of treatment for gastric cancer. He tolerated the herceptin well but after initial infusions of Imbruvica he was hospitalized for respiratory distress with what was thought pneumonia. This drug wreaked havoc on his lungs . He left the hosp after nearly a month and was on oxygen for the rest of his life and a DX of pneumonitis caused by this drug. No more Imbruvica at that time, was treated several months w IVIG to help his O2 stabilize and it did, then his oncologist started him back on this same drug ! 3 weeks later my husband was dead from respiratory failure. I read that anyone with respiratory issues should not be treated with Imbruvica."

• Mike
• Taken for 2 to 5 years
• August 2, 2021

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia "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 & waiting on the results of an MRI I had for another issue to see what my lymph nodes are looking like."

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

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia "My husband did very well on Imbruvica taking one pill three times a day when he was switched to 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 get a cardiologist if you take this medication."

• GGL
• Taken for 1 to 6 months
• December 7, 2018

Imbruvica (ibrutinib) for Graft-versus-host disease "Started Ibrutinib (Imbruvica) on 22/10/2018 (7 wks ago) for cGVHD (Chronic graft-versus-host disease) arising from stem cell transplantation (SCT) (matching female sibling) in 2014 to treat Mantle cell lymphoma (MCL). cGVHD (skin, eyes, mouth & subcutaneous tissue resistant to front line treatment (Mycrophenolate & predinsoline - ave dose 20mg). Experienced quite severe diarrhoea after 2 days. Resolved after 5 weeks after taking loperamide, which is no longer required. Also experienced increased fatigue and maybe slightly more cramping (was already getting some cramps which is common for cGVHD). Immunoglobin levels have dropped will require an infusion. Some early signs that skin symptoms ie scleroderma might be reducing. However too early to tell effectiveness, suspect will be another 30-60 days before start to see if going to have impact"

• Anonymous
• Taken for 1 to 2 years
• September 24, 2021

For Waldenström Macroglobulinemia "I was diagnosed with Waldenström Macroglobulinemia (WM) and in 2009, Attempted treatments by Rituxan infusion as well as several types of medication all had been of no avail. Using the old drug, Leukeran, made improvements, however, with diminishing efficacy. I have had Imbruvica for about two years, with dosages first at 420 mg then reduced to 280 mg. My IgM level dropped and (RBC count & HGB level) both increased quickly in a few months. To-date IgM @ 1000 and RBC & HGB in normal range (though on the high side) as well as platelet & ANC (on the low side). Side effects are bruise, high blood pressure and indication of atrial fibrillation ------ currently seeking for cardiologist's determination."

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

Imbruvica (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. Appears to have slowed the progression of the lymphoma. I depend on Pan Foundation or Johnson and Johnson to help with the price of the medication as I also have infusions every 8 weeks at $963."

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

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia "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."

• John
• Taken for 2 to 5 years
• September 22, 2023

Imbruvica (ibrutinib) "For the most part, I've had an excellent response to Imbruvica, with very little side effects. 2 months ago, the 560 mg hard tablet was discontinued. So they changed it to 4 capsules adding up to 560. Since I started taking it, I began having muscle pain and dry eyes in the morning. I'm wondering if it's getting into my bloodstream quicker as a capsule and that is why I'm having the side effects."

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

For Chronic Lymphocytic Leukemia "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 and 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 night leading to his passing. My biggest take away is to trust your instincts. Don't suffer the side effects."

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

Imbruvica (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."

• irkee
• Taken for 2 to 5 years
• March 19, 2024

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia "If my mother had had this drug, she wouldn’t have died of CLL 25 years ago. Wonderful drug. Very few side effects. Hard to know what symptom to pin on what (including age). I’ve maintained excellent blood counts, life activity, general well-being for 4 years now. Side effects: blood pressure, red spots under the skin of arms, slight decrease in energy, greater tendency toward bruising/bleeding, recent slight urinary incontinence. 420mg pill/day makes it easy to administer."

• JoeP
• Taken for 2 to 5 years
• October 4, 2022

For Chronic Lymphocytic Leukemia "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."