This medication killed my dad. He did alright on it for a year or so. Then he was in the hospital because of fluid build up. Because it was during COVID, the doctors did nothing but try to treat symptoms and moved him back and forth from ICU. He died from gastrointestinal hemorrhaging. He went from feeding five horses and taking care of grandkids to dead within two weeks. He drove himself to the hospital and then they tried to say he was a geriatric patient that couldn’t care for himself and refused to eat. But they made him that way! I had to spoon feed him he became so weak. So please, if you feel unwell, go to the hospital and insist they check for hemorrhaging!
I'm on 280 dosage of imbrivica and have all terrible side effects: food tastes funny causing me not to eat, nausea, extreme fatigue, poor concentration, difficulty walking most days. The side effects change from day to day with some days worse than others. I'm always anxious and am consumed with dying in 1-3 years as predicted by my oncologist. I am not who I was and will never be again. This makes me so sad causing me to cry when I lay in bed at night, I am 68 years old and have had CLL for a long time but it never affected me at all. And now I face dying.
No side effects for me dropped my numbers from 420,000 to 11,000
I’ve been treating on this drug for almost 2 years. My IGM has decreased from +5800 to 1100. IGA and IGG are almost normal. All other blood test are within normal range. I’ve had off and on diarrhea and slight bone pain. Otherwise the side effects have been minimal. In summary, although this is a lifetime commitment, I favor this drug as opposed to chemo.
I've just started my 4th year on imbruvica. Remarkable results. A wonder drug! I have many side effects, but I deal with them. The most serious side effect is lungs always filling up with mucus and congestion. My oncologist also has had me on I.V.I.G. along with the Imbuvica. It makes a big difference for me.
This medication has been effective for me. My counts are generally acceptable and the side effects are tolerable, though irritating. Initially, I was on 280's but had excessive bruising and bleeding, so was reduced to 140's. Those have reduced the bruising and bleeding, but not eliminated them. Let me list the side effects in order of intensity. 1. Skin effects of fairly extreme nature on ankles and calves, with thickening of skin into plaque structures and general reddening 2. Constant fatigue with barely sufficient energy for daily tasks 3. Occasional dizzyness 4. Rectal and urinary incontinence that is irritating but not severe. I spend way too much time on the toilet. 5. Exacerbation of neuropathy already present from T2 Diabetes 6. Extreme sensitivity to both heat and cold with shaking from cold and collapse if exposed to too much heat I have had CLL since 2009 and had 5 sets of chemo leading up to my use of Ibrutinib. I had one remission of almost five years. Largely, previous chemos did not have extreme side effects, but some short hospitalizations. This latest chemo with obinutuzumab and bendamustine almost killed me, putting me in the transplant ward for 47 days and then rehab. I was told that another dose WOULD kill me, so I took the ibrutinib. It has been effective if not pleasant for the last year and I hope it will stay effective until something like CAR-T is applied to CLL.
My father had CLL. He previously was treated with chemo. Didnt lose his hair, tolerated pretty well and CLL sent into remission. 2 years later it came back. They wanted to treat him with Imbruvica. I was worried about the lifelong commitment of this drug and questioned the doc especially since chemo was tolerated and qorked previously. Plus long term studies I was having trouble finding data and what about patients that couldnt tolerste this treatment...could they go back to chemo after using this drug? The doctor siad this is the new standard of care and chemo is more harsh and this drug could potentially keep the cll i. Check for a long period of tume. We reluctantly moved forward. To mentio. Dad was 65 strong man, not many health issues. Just high blood pressure but effectively being managed with meds for years, no blockages, always active. When getting chemo he would do oil changes etc. He started treated on imbruvica. In 1 month lymph nodes were shrinki g but side effects started. Bruising, weird marks on skin, cough. Fatigue was very bad and got worse, he also got dizzy, had some trouble breathing, and got feel his heart beating. He saw pulmonologist and cardiologist test performed, no flags. The gave him an i haler a month ago saying he developed asthma. We spile to oncologist numerous times about side effects. My dad was getting depressed from fatigue. They said the longer you are on the drug the less side effects you will have. Reluctantly he remained on. He went upstairs two weeks ago Nd collapsed. They tried to resuscitate and could not. Cardiologist is perplexed. Medical examiner classified as a cardiac event. In so heartbroken. After his death I found an article from sept 2019 stating cardiac deaths are happening especially in the cll population. I wish I saw this sooner.
This medication has worked well to lower my IGM numbers but I wish I wasn't so tired all the time and I have a hard time eating. On the other hand, I have dropped >40lbs.
My only problem with Ambruvica is that my blood pressure is steadily been increase .I use to have great blood pressure 120 over70 now its 147over 90 I am about to go on blood pressure medication .I also have left shoulder pain for 4 months now all test came back negative...
Tolerated 3 weeks, daily dose. Spiked BP, wbc. Had wknd of fevers, bone pain. Stopped b/c of recurring migraine. Need to find gen prac before continuing who can manage side effects with me. Thinking of self advocating for apherisis followed by steroid treatment to build up my ability to handle the drug. That said, 3 days after my fever wknd, my wbc dropped by 66K!!! I think if I get some TLC now, I'll be more ready for the next round. I am worried about my other chronic health conditions (MS, heart murmurs, familial hyperlipoedemia)and how the fevers exacerbate my MS. I'm challenged by side effects. But this drug is VERY effective thus far (2 months in).
It brought all of my blood indications back into the normal range. Only side effects observed are adverse reactions to insect bites.
After treatment with Rituximab and Bendamustine in 2011 my lymphocyte count went up to 160,000 in 2014. Have been taking Ibritinib for 3 years now with good results. Initially I had some pacs (not pvcs) but they went away after a couple of months. Expensive but worth the cost.
white count 188 now 15 this in 6 months this medication is life changing. I do have some minor side effects but nothing I can't handle.
Have been on it for 6 mounths wbc went from 350 to 10.8 red cell near normal and swollen lymph glands normal. Platlets still low but improving. No side effects noticeable enough to complain about. A miracle drug
My husband had severe side effects. Swollen mouth,swollen tongue,two very bloody urines. Had to stop after a month.
On imbruvica for 5 months. My wbc and lymphocyte counts went to normal fairly quickly, but I have had multiple side effects. Am now trying to decide whether to stop taking it. I've been in hospital twice and ER once due to chills and high fevers. Now I have severe neutropenia, thrombocytopenia, and hemolytic anemia all apparently related to the imbruvica.
Side effects were minimal
Starting third month (cycle). All costs paid by insurance with copay assistance. Hgb up to 11.7 from 6.1. PLT u from 18.9 to 141. White blood count holding in 5.0 range. Virtually no side effects. Diagnosed with CLL 10 years ago. Been treated with Rituxan, Bendamustine and gamma globulin with success over nine years when I then tanked which resulted in my movement to Imbruvica. So far so good. Fingers crossed.
Sometimes in life a drug comes along that is life changing. This is that drug. I am on my “second remission” now, and I couldn’t be happier. My side affects were as follows…..thinning hair! It’s not popular for a drug company to admit to it. Bruising, spots, everywhere, even where you don’t want them…skin is easily scratched and bloodied. Major indigestion, never went away, caused esophagitis. Headache was mild and regular. Spent a lot of time at GYM to build my body and strengthen. Had Covid for one whole month..would have died had it not been for trying eat right “limiting” alcohol, and building on my weakened immune system. Side affects aside, be thrilled that we are living in a time of miracle cancer drugs. Will never need chemo again! Took this drug 3 years with great blood work, ALL NORMAL, OMG! Now just taken off…hope to get at least 3 years! Post chemo was 5 years in remission, and I felt great! Side affects will temper in time a little…but just remember modern science is the best thing since popcorn (buttered of course).