Ibrutinib User Reviews & Ratings (Page 2)

• Sti...
• Taken for 2 to 5 years
• May 15, 2022

Ibrutinib for Mantle Cell Lymphoma "For me, this has been a wonder drug. I was riddled with tumors when I started 560 mg daily. With additional treatment with Rituxan, all the tumors disappeared. I had practically no side effects. At the end of chemo, I was in remission and off of medication for 4 years. The mantle cell lymphoma then began to reactivate, and I was put back on 560 mg of Imbruvica and went back into remission immediately. After a year, the dosage was reduced to 280 mg daily. Nearly two further years on, I am still in remission, and I have no side effects at all. I could not recommend this drug more highly for mantle cell lymphoma."

• 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."

• Muk...
• October 2, 2020

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, I still have the diarrhea. I tried all medications and some teas to stop it. Really don't know what to do."

• irk...
• Taken for 2 to 5 years
• March 19, 2024

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."

• Log...
• October 12, 2020

Ibrutinib for Waldenström Macroglobulinemia "My husband has non-Hodgkin's lymphoma and Waldenstrom macroglobulinemia, 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 until the ambulance arrived! He was in the 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 the hospital. I totally blame ibrutinib, and now our lives will never be the same."

• Joe...
• 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 other people have had. I still have NO side effects."

• Mfi...
• January 9, 2018

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 godsend! Side effects: I noticed cramping at about 5 months and back and 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."

• 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."

• 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-sized ball nodes across my chest and close to my heart. Oncologist, amazing Dr. put me on Imbruvica in August. Now all tests, including CAT scan, 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."

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

Ibrutinib for Chronic Lymphocytic Leukemia "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 for Chronic Lymphocytic Leukemia "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

For Chronic Lymphocytic Leukemia "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

For Chronic Lymphocytic Leukemia "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

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 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 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."

• Bro...
• Taken for 1 to 6 months
• June 9, 2023

Ibrutinib for Waldenström Macroglobulinemia "My father was diagnosed with stage 1 Waldenstrom macroglobulinemia in March 2021. He underwent chemotherapy, and in January 2022, he was doing so well that they switched him to Imbruvica. By May 16, 2022, he was rushed via ambulance to the hospital and admitted to ICU on June 5, 2022. Sadly, he passed away. I believe with all my heart this medication killed him within 4-5 months of taking it. They NEED to take this medication off the market. People are losing their loved ones quicker because of this medicine."

• Wif...
• Taken for 1 to 6 months
• February 17, 2022

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 to be pneumonia. This drug wreaked havoc on his lungs. He left the hospital after nearly a month and was on oxygen for the rest of his life and a diagnosis of pneumonitis caused by this drug. No more Imbruvica at that time, was treated several months with IVIG to help his O2 stabilize, and it did. Then his oncologist started him back on this same drug! Three weeks later, my husband was dead from respiratory failure. I read that anyone with respiratory issues should not be treated with Imbruvica."

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

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, and waiting on the results of an MRI I had for another issue to see what my lymph nodes are looking like."

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

Ibrutinib for Graft Versus Host Disease "Started Ibrutinib (Imbruvica) on 10/22/2018 (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 frontline treatment (Mycophenolate & prednisone - ave dose 20mg). Experienced quite severe diarrhea 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). Immunoglobulin levels have dropped will require an infusion. Some early signs that skin symptoms, i.e., scleroderma, might be reducing. However, too early to tell effectiveness, suspect it will be another 30-60 days before starting to see if it will have an 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 and HGB level both increased quickly in a few months. To date, IgM at 1000 and RBC and HGB in normal range (though on the high side), as well as platelet and ANC (on the low side). Side effects are bruising, high blood pressure, and indication of atrial fibrillation. Currently seeking a cardiologist's determination."

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

Ibrutinib for Chronic Lymphocytic Leukemia "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 for Chronic Lymphocytic Leukemia "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."

• 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."

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

Ibrutinib for Chronic Lymphocytic Leukemia "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 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."