User Reviews for Ibrutinib to treat Chronic Lymphocytic Leukemia
Also known as: Imbruvica
Ibrutinib has an average rating of 6.4 out of 10 from a total of 38 ratings for the treatment of Chronic Lymphocytic Leukemia. 58% of users who reviewed this medication reported a positive effect, while 34% reported a negative effect.
Imbruvica (ibrutinib): “12/7/17, I was taking 3 (140mg) a day. The first 2 weeks it dropped me down (drained/ no desire to eat). After that, my body did a 180 degree change - 18 days in I was up walking freely and could taste food. I was 51 at that time, my Doctor told me that I may be on this for the rest of my life. Now here in March 2018, 1 pill a day (420mg). I truly grateful for my oncologist. I pray for us all.”
Imbruvica (ibrutinib): “I am a female going on 79 years old. I was first diagnosed with CLL in 2013, when my primary doctor noticed a rise in my WBC. I started seeing my present Oncologist in November of 2014. At one of my visits in 2015 he informed me that my WBC had reached 295,000. When I asked him if there was an alternative to chemo, that is when he put me on Imbruvica (3 pills a a day) -that was in August of 2015. I am still taking the same dosage of Imbruvica and my WBC is at 10,000. My visits to my doctor are now six months apart. No side affects.”
Imbruvica (ibrutinib): “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 less side affects, particularly with a-fib. The next generation of this drug is showing less side affects, particularly with a-fib so I am considering.”
Imbruvica (ibrutinib): “CLL came back after almost 3 years being cancer free. Now I was put on Imbruvica. It fluctuates between 11,000 & 14,000 plus per month. It’s said to be a miracle drug. I take 3 capsules per day everyday for the rest of my life. All my numbers are better than the best my oncologist says. However no one mentions my weight loss. I’ve lost 40 lbs. I think the dosage needs to be adjusted as I believe it’s just too much for my size. Anyone else have the same experience?”
Imbruvica (ibrutinib): “I started Imbruvica in August 2019. I had to stop after only one dose due to an ER visit showing an Infection. I was taking 420 mg. Started back on Imbruvica again, lasted 7 doses then another Infection, this time a UTI that made me sepsis. I stayed out of ICU. Went on antibiotics, cleared up the Infection, and was started again on Imbruvica at 280 mg. I have went 28 days. I have nausea, some diarrhea, and pain in my lower right quadrant, and both sides of my lower back. I have medication to help with the nausea, and diarrhea. This medicine is my best chance to get my CLL back into remission. I was on Bendamustine, Rituan, and Newlasta. I was allergic to all three, had 7 hospitalizations and almost died. I was in remission for 39 months before this spring CLL ugly head appeared in my life again.”
Imbruvica (ibrutinib): “Due to my having a variant GI system (with its own side-effects), my oncologist, in an abundance of caution, started me on Imbruvica 1 capsule in the AM, daily. Literally within days, the SIGNIFICANTLY large lymphs in the front and rear of my neck, disappeared. WOW! MY WBC's skyrocketed, but that is typically expected due to the mechanisms by which Imbruvica works. Oversimplifying here -- the abnormal (cancerous) cells, congregate in the lymphs. Imbruvica forces those abnormal cells out into the bloodstream, where they can be attacked and starved of the BTK protein, which they need to thrive and propagate. The "dead" abnormal cells are then flushed out of the body. After 2 months dose upped to 2 capsules daily, and still tolerating well.”
Imbruvica (ibrutinib): “I was prescribed Imbruvica for CLL after being in remission for several years. The past protocols had always worked but where very hard on my system. The side effects weren't as extreme as with other treatments. But Imbruvica did not work at all for me. Taking the drug has made my health & quality of life worse and now having stage 4 CLL my prognosis is grim. I lay in the hospital having numerous transfusions that are nothing more then a bandaid for my very soon eminent death.”
Frequently asked questions
- How long can you stay on Imbruvica (ibrutinib)?
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Imbruvica (ibrutinib): “My husband has been on Imbruvica since October 2015 and is now down to one pill a day. It is a miracle drug but I just found out today that they are changing from capsules to tablets and tripling the price. Shame on you, greedy Johnson and Johnson.”
Imbruvica (ibrutinib): “It did reduce the size of my dad's lymph nodes so from that perspective it was working. My dad was previously treated with chemo. Almost immediately my dad had side effects.. very bad fatigue which was impacting his life and depressing him, he developed a cough which was monitored to ensure no pneumonia. Recently they put him on inhaler saying he developed asthma. He also could feel his heart pounding. He saw a cardiologist for this and had tests but nothing came up. He would get marks and bruising. He started to to get what my mom called chemo brain...we had been questioning if he should come off from the side effects but weren't sure of the alternatives especially now that he received this drug. The doctor said side effects lessen the longer you are on it so he decided to stick it out. He last saw the cardiologist two weeks ago. Last Sunday he dropped dead and couldn't be resuscitated. Cardiologist was perplexed.”
Imbruvica (ibrutinib): “Wow...I'm seeing a theme here! My husband began Imbruvica for CLL in June 2017 and we were both telling everyone that it was a miracle drug. Then at 3:00 AM on 12/30/17, he went into sudden cardiac arrest without any warning. It is an absolute miracle that he survived at all and he still has a long recovery ahead. I think this needs to get more coverage based on the number of people who have suddenly died - or almost died!!”
Imbruvica (ibrutinib): “My husband was on Imbruvica for CLL. He was living a very full active life. He had no risk factors for a cardiac event. He died suddenly of cardiac arrest. Was it Ibrutinib that caused sudden death? I will never know but that is what I suspect.”
Imbruvica (ibrutinib): “My father (68) is suffering from CLL since 2006. He has gone through several chemo sessions till now which has only deteriorated his health. Due to heavily pretreatment for his disease his health has only worsened. He gets admitted to hospital every 3 to 4 months for other ailments that happen due to the chemo sessions. His last chemo session happened in September 2018 which affected his brain heavily. Now doctor has again advised us to put him on Imbruvica (Ibrutinib). He has taken ibrutinib before for 6 to 8 months in year 2016-17 and all went well with him, except few common side affects. We discontinued with the medicine due to financial issues and again he was on chemo sessions. Now It's just third day of the dosage and he is suffering from headaches, vomiting, body chills and upset stomach. Our financial conditions don't allow to have this medicine now but this is the last hope for my father now.”
Imbruvica (ibrutinib): “He was doing so well on this treatment. But then he had a sudden cardiac arrest. It took 16 hours to get his heart to stabilize. He was shocked more than 20 times. He remains in the hospital three weeks later. His heart, brain, lungs are damaged. He cannot walk. He is a father of 2 teens and had just celebrated his 47th birthday.”
Imbruvica (ibrutinib): “My 87 yr old mother took 3 pills in the morning. It lowered her white blood count from 125,000 two 14. 10 is normal. That's the only good thing, I can say about this medication. She had such severe diarrhea and vomiting , that she could not keep any kind of nutrition or food into her system . The drug almost nearly killed her . Her doctor took her off the medication for two weeks , then have her start taking it again at a lower does. Once again soon as she started taking the medication again , the side effects came back and the doctor decided not to continue with medication. Since her last appointment with her oncologist , her white blood cell count is now 50 . Next doctor appointment they're going to try a older less effective drug.”
Imbruvica (ibrutinib): “I have been taking Imbruvica for 3 years, 420 mg. I have no side effects and my counts are in the normal ranges and very stable. It is a miracle drug as far as I am concerned. I previously had full chemo and it lasted 2 years then I relapsed.”
Imbruvica (ibrutinib): “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.”
Imbruvica (ibrutinib): “CLL had my WBC at 120,000 and liver, spleen, nodes were beginning to swell. At 10 days on 420mg my count was 70,000, at 28 days 40,000. WBC continued down over next 10 months to 8,000. I had expected side effects over those 10 months diarrhea, mouth sores, joint pain, etc. At the exact time my WBC reached normal levels, the drug became toxic with devastating urinary issues as well as every side effect listed. Stopped the full dose for 3 weeks, WBC rose to 20,000. Started 280mg with minimal and tolerable side effects. WBC now at 13,000 and falling. If toxicity returns we will try 140mg.”
Imbruvica (ibrutinib): “My dad has CLL. Started taking Imbruvica and a month later developed lesions on his brain, spleen, lungs, and adrenal glands. Lesions were initially thought to be cancerous. A biopsy proved that the lesions were actually a fungus called aspergillosis. This particular type that my dad has is invasive and very often fatal in patients with a compromised immune system. I should’ve done a better job at researching all of the side effects. My main concern was cardiac issues and I don’t recall seeing information about this drug causing fungi before my dad started it. The CLL was managed by chemo infusion pretty well in my opinion; now I feel like this new drug has caused WAY more issues for him and FAST!”
“Back in 2017 my doctor started me on (1) Ibrutinib pill per day for (1) month to see as to how I would tolerate the medication. Then he increased to (2) pills per day as there were no side effect and after one month, checking my blood, he wanted to go full scale and we started with infusions of some medication once a week in addition to the (2) Ibrutinib pills . This went on for several months till the results of the white cells was good. Then we went with the infusions once a month for (6) months while still taking the (2) Ibrutinib pills every day. After that we continued the (2) Ibrutinin pills per day up to now, Oct,2019. My condition was caused by AGENT ORANGE, a defoliant, in Vietnam. I am under care of the VA (Veterans administration) and the care is just wonderful. Oh, the CLL was attacking my KIDNEY and the VA doctor stabilized it. NO SIDE EFFECTS WHAT SO EVER from the beginning to present.”
Imbruvica (ibrutinib): “I was diagnosed with CLL and was immediately taking 420 Imbruvica for 18 months until a physicians assistant advised me I could be on a watch and wait status since my white cells were still low. I hated the side effects and quickly stopped using the drug. The side effects continue as damage occurred to my body. I will not be treated by this drug ever again and feel my Dr was wrong to prescribe it for me. It is a horrible drug.”
Imbruvica (ibrutinib): “My mother had CLL, she was given Imbruvica, 3 weeks later she died. She got sepsis and organ failure. The Dr in the ICU told me it was from this drug! This Imbruvica should be recalled, very dangerous. The side effects is 5 foot long!”
“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.”
“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.”
“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.”
Imbruvica (ibrutinib): “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.”
This information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.
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