imbruvica treatment

[naturallady]

husband to start imbruvica very soon. wanted to get some others experiences

[cajunjeff]

I am two years in on full dose ibrutinib. My labs are near normal now. I have had a few mild manageable side effects, some diarrhea now and then and a 15 point spike in blood pressure which has me on BP meds that are easy for me.

Not too bad a trade off for a once a day pill that keeps my cll in check. Good luck.

[naturallady in reply to cajunjeff]

thank you soo much.

[country76]

First symptom was diarrhea, however it only lasted for a few days. I had several side effects which I have managed to live, with some have gone away. Currently my BP has elevated. They haven't managed to get it under control, it is down some. I am one year this month. My labs are all normal except my neutrophils have considerably risen however not into normal range yet. All other labs normal. CT is normal.

[naturallady in reply to country76]

thank you and others for their help.

[annmcgowan]

I have been on ibrutinib for 2 years. All normal bloods . In remission. All side effects mild, intermittent and manageable. It has been and remains a wonderful drug for me.

Good luck

Ann

[naturallady in reply to annmcgowan]

thanks so much!

[PlanetaryKim]

Ibrutinib/imbruvica was an awesome and super effective drug for me for 2.5 years. It really controlled the CLL very well and very quickly, and for me with almost no day-to-day side effects. But arrhythmia was becoming an increasing problem in my case, so I was recently moved to venetoclax. It won't affect everyone that way. But just something to keep an eye on. Because there are alternatives if arrhythmia develops. But as far as managing CLL - it is a miracle drug. Good luck!

[Canuck901 in reply to PlanetaryKim]

How’s the Venetoclax going so far ? Hope all is well!

[PlanetaryKim in reply to Canuck901]

It's going pretty well! Not having any issues. Do have low-grade ongoing fever (below 38) for about 3 weeks now. May actually be venetoclax side effect. Or I suppose it could be a flu in a body that can't mount a full defense so I don't get sicker than this? I don't know. Nor does anyone else. but I feel okay at the moment.

[Canuck901]

Ibruntnib is a good drug , it’s been around a long time and iit helped a lot of people , it does have some side effects but most are tolerable depending on age and other conditions.

Your husband should probably get a muggle test on his heart before he starts treatment .

I’m not sure where you live but there is a another newer drug called Acalabrutnib / calquence with a less side effect profile than ibruntnib. It was recently approved in North America and some other countries

[astefanovich]

I have been on Ibrutinib for over 5 years now. I have experienced some unpleasant side effects but they have been managable. I see my Dr. every 6 months now and my numbers are still good. Best of luck and I hope the drug works miracles for you as it has for me.

[Jacksc06]

Hi. been on IB for around 9 months now. Bloods near normal, Occasional joint and back pain but nothing unmanageable. It has been a real game changer for me. Best advice i can give, drink lots of water, eat healthily exercise to your own level. Hope it goes smoothly, Best wishes.

[steve_canada]

I been on IB for 13 months and it has been a godsend. I am back to work just like like normal and see my doctor every month probably because of being higher risk 17p mutation.

But beside the infrequent leg cramps and sore hand joints which are completely manageable I feel great.

I wish your husband all the best and tell him to keep his mental state good - don’t get down everybody’s got some ailment to deal with - ours is this!

[dvd1955]

I only lasted 6 weeks on IB. Had joint pain many times during that period, on knees and hands mostly. Ended up in hospital with extremely severe knee pain and AFib. Onc. took me off IB immediately, and I'm back on W&W again. Odd thing is my numbers have been pretty good. WBC count not nearly as high as it was and has only gone up a little in the last 6 months. Platelets are dropping, so I know my W&W status won't last long. Makes me wonder if we are taking more treatment meds than we actually need to keep CLL under control. I was on 280 mg.

[MN1999]

I am currently on a break from IB due to low ANC (normal would be 1.6 to 8.3). My neutrophils kept dropping thru out the 5 months I was on IB and now are at 0.2. The doc is having me get weekly labs even tho getting in to the clinic for the tests is walking a gauntlet thru hand sanitized, masked and separated patients.

Initially my dose of 360 mg Ibrutinib sent my side effects into overdrive with explosive diarrhea, nausea, rash, SOB, fatigue and a myriad of other challenges. However, that being said I am 73 and thru out my life have reacted strongly to many medications plus have numerous allergies. When the doc reduced my dose of IB to 240 mg after the first month the side effects became manageable. I weigh just under 150 pounds so the smaller dose was appropriate according to the guidelines I've seen. I have been wondering if I will be able to go back on IB eventually or not. It was a Godsend for getting my other numbers under control very quickly. My WBC count last fall when I was hospitalized was near 800,000 and I was severely anemic. My WBC now has stayed in the 20,000 range and I am no longer anemic.

I am very blessed to feel good now although social distancing and relative isolation is a challenge. The stable where I board one of my horses is closing tomorrow for two weeks and I will miss my therapeutic horse time...

[RJR1]

I'm approaching 5 years on full 420 mg dosage. My numbers have been normal since about 6 months in.

Other than brittle nails and split skin on my finger tips I've experienced none of the often reported side effects.

Recently about 3 months ago I started to experience some skeletal / muscular pain, which can relate to imbruvica.

Turns out....well dang it, that pain is related to newly diagnosed Prostate cancer that is metastatisizing. And yes...I was being checked regularly. As recently as 6 months ago the prostate was about what would be expected for a 69 year old guy and my PSA was only slightly elevated...this came on like a bullet train. Non operable... treatment started to hopefully slow or control ...

Attitude is good..feeling fine..another cancer isn't gonna stop me.

[Bijon3 in reply to RJR1]

Have you looked into Proton Radiation? My husband had it for prostate cancer 14 years ago and is fine. MD Anderson is where he was (and I am being) treated. I am on 140mg Ibrutinib (reduced because of side effects) but on a break for a while.

Good luck and keep fighting!

[RJR1 in reply to Bijon3]

Yes....it's on the table. thx

[Ixodes]

Hi, am on Imbruvica over a year. I found that I need to take it between 10:00pm -

11:00 pm after at least not eating for 3hours or more. I found that the longer I am

on it the side effects got worse. I am 81 and have four tickborne diseases plus asthma,

I know that if one is over 65 the side effects may be worse. My anxiety has been a problem.

Not an easy med to take but it does help. However, with all this I am doing very well with all

I do. My energy level is good and I am very active. We must keep a positive attitude. I am bigger than a RNA virus molecule (Covid-19). Stay safe!.

[CLLCalifornia-USA]

I’ve been on Ibrutinib a little over three years and doing well with no side effects. Numbers are great and so is my energy level. I’m 68 and hope Ibrutinib continues to perform well. Previously treated with FR and BR. I take it at 7 in the evening and that works well for me. Good luck. Sally

[Badgolfer78]

I have been talking Imbruvica for 5 years.. I’m down to one 70mg capsule per day for the last year and labs continue to stay in normal numbers..

[livinglifewell]

I've been on imbruvica for seven years and it's controlling my disease quite well. I have awful muscle and joint pain though which may be complicated by kidney disease, fatigue, and occasional mouth sores, but it was a good option for me.

[michaeledward]

I've been on Ibrutinib for 6 years. For me, it has been a miracle drug. My wbc had risen to over 300,000 before taking IB and within a year it was down to 12000. I'm now in partial remission and my wbc ranges between 11,000 and 14000. The side effects have been generally tolerable. Within a few months of taking IB, I developed mouth sores and was prescribed valcyclovir which resolved that problem. I also occasionally have muscles spasms in my hands but the spasms subside after a minute or so. IB also did cause my toenails to become very brittle which resulted in frequent in-grown toenails, but after one too many infections, my podiatrist performed a "partial permanent" toenail removal of both my big toes which resolved the problem. I also developed a fungal infection and was prescribed Ketoconazole shampoo which controlled the problem But I recently discovered that Ketoconazole should not be used while taking IB. I need to make an appointment with my dermatologist to get an alternative treatment but I'm waiting for this Covid -19 virus to subside before making an appointment. I feel quite blessed that this drug became available for treatment when it did.