CLL Support Association
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Imbruvcica Dose

I started on Imbruvcia two months ago taking 3 _140mg per day... Is this the normal starting dose?... do they decrease the dose over time?... how long do you stay on this drug?... can you decrees the dose if you get sick ie the flu or something upper chest?... If you feel crappy can you cut back to 2 140mg pills a day until you feel better?...

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Hi emarine

All dosing changes need to come from your doctor...

I'm suprised these questions were not addressed by your doctor... have you read the literature you should have been given?

The CLL dose is 3 pills daily, for life... or until your doctor decides that side effects are difficult to manage or the drug is no longer working.

Your doctor may reduce the dose in case of other illnesses, but you should not do it without consulting your CLL specialist..

If you are feeling ill contact your CLL specialist immediately for guidance.

Remember no grapefruit juice or Seville oranges, star fruit etc... all supplements need to be OKed by your doctor

~chris

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Thanks Chris, My Doc's reply was basically as long as it's

working keep on going as is... He informed me on the juices as well as the Pharmacists who provide the drug... however I was not aware this was a life long deal ... How often are you checked out at the start of Imbrouvica?... I had blood tests weekly the first month then every 2 weeks the second month & seen my onc twice so far in the 2 months since I started ... once after the first week then after the 5th week.... so far all is good with the exception of internment dark urine which was tested last week and don't know any results yet... thanks for your reply...

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emarine-Thanks for your note. Imbruvica (Ibrutinib) is usually administered in doses of three 140 mg capsules daily, for a total of 420 mg. The capsules are to be taken all at once, preferably with food, which tends to help in absorption (some information indicates that food actually increases its absorption in the body by a factor of 2X). Ibrutinib is a breakthrough BTK inhibitor developed about 7 years ago; my CLL specialist Dr. Stephen Schuster at the Univ. of Pennsylvania in Philadelphia was part of the initial clinical trials of this drug. Dr. Schuster trained the renowned Dr. Anthony Mato, who is well known in CLL circles, who's done an enormous amount of research on this and other treatment regimens. Ibrutinib has shown very high effectiveness in several studies of patients, ranging up to 70%- 80% or even higher, with some patients achieving MRD negative status (no evidence of disease) after the first year or even less. At the present time, doctors feel patients will be on the drug indefinitely, but some patients on for five years or more are doing quite well and have no evidence of disease- bringing them (about 10%- 20% or more in some studies) to complete remission (CR). Some side effects are notable, present in roughly 5%- 15% of the patients including atrial fibrillation (AFIB), bleeding, bruising (including so-called "phantom bruising" for no reason at all), lightheadedness, slightly decreased platelet counts, mouth sores, muscle and joint aches, skin rashes and diarrhea. Not all patients will experience these symptoms- generally only a small percentage. I have been on Ibrutinib for 6 1/2 weeks and have experienced only very minor symptoms- slight aches, some red "blotches" which go away after a few days, very slight and temporary lightheadedness. The good news is that there's an even newer version of Ibrutinib called acalabrutinib that is being developed which has even fewer side effects and is just as effective or more so. More good news: when combined with newer drugs like Venetoclax, clinical studies are now showing that 80%- 100% of patients show a positive response and a very high percentage- 70%- 80% or more- are MRD negative in the first year. This is an example of the new "combo" therapies now being tested which appear to be the way forward with treating CLL. Well known CLL experts around the country including Dr. Michael Keating at MD Anderson in Houston are using combo trials of I plus V with excellent results- even for people who have some of the more challenging markers- like 17p. That is great news for every CLL patient because it indicates that the medical community is moving toward a final cure, which hopefully someday (in the next 5-10 years) will be achieved. If you have specific questions, there are websites (just Google Ibrutinib or Imbruvica) which have dosing, side effect and clinical trial information which is quite helpful. Before you consider making any changes to your plan, definitely consult your doctor/CLL specialist. I hope that is helpful. I am new to all this, diagnosed in May 2017- and I have pledged to "pay it forward" by helping others with the knowledge I have gained. Wishing you good health and much success in the years ahead! -G

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Excellent news thanks for the reply

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emarine- My pleasure. Wishing you good health and success!! -G

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Like you said, Gene gave an EXCELLENT summary.

Having been on I for about a year, let me add that there's an ongoing controversy about dosage strength, with some believing and strongly defending the full 3 pill dosage (see Dr. Sharman's blog), while others have experienced significant side-effects, so WITH THEIR DOCTOR's AGREEMENT, have reduced the dosage. I, and several other members of this forum are among this group, and I'm not aware of any significant problems - at least not reported here, yet.

Fortunately, there are some ongoing studies to look at this problem, so we should get a better understanding in the not-too-distant future.

Gary

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This forum is a breath of fresh air, I have learned more in a few weeks than the last 8 years dealing with CLL alone... thanks to ALL involved here...

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