Ibrutinib 2 days in

Started my dosage of 2 pills every night at 10pm this past Mon. No side effects thus far but I'm certain that I'm feeling more clear headed than I have been in a very long time. Could be my imagination, but as one who is really in tune with their body I believe it's the drugs. Will post again when I have a new update to share on his journey.

David

35 Replies

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  • Great news-Best of luck in the journey. -bill

  • Hi David. I started Ibrutinib 2 weeks ago, and from Day One I felt it was having a mild stimulant/energizing effect on me. I actually get quite a lift from it each day. Mood elevator too as well as physical energy. At first I thought it was psychological... that I was just elevated by new hope. But I am quite sure it is the pills themselves that are energizing me. No bad side effects so far in my case. Some slight diarrhea.

    Good luck on your treatment journey,

    kim

  • As your blood count numbers get better you should feel better. I had that "better" feeling early on and then it went away. Now at 7 weeks my blood count numbers are in the normal range. The doctor says that is may be a couple of months before I get some of my energy back.

  • I start taking Ibrutinib tomorrow but my Oncologist wants me to take 3 pills a day. I'm in a clinical trial with Venetoclax.

    Good luck,

    BC

  • Wishing you all the best BC. be well-bill

  • I am starting my 3rd week on IB. I am also taking 3 pills daily and in the trial with Venetoclax. So far I've had no noticeable side effects.

  • Nice...I start today on the trial...onward and upward.

  • Good luck. The only down side is that I have to go in to the hospital once a week for now. I don't like that too much but I won't complain. Best wishes to you.

  • I just received my meds today but the bottle says Imbruvica.. Is that the same as Ibrutinib?

  • Ibrutinib is the generic name- standardized by International Nonproprietary Names (INNs). (Its likely in the fine print on the prescription label and on the package insert for your bottle).

    The "-inib is the ending for all BTK inhibitor generic names. see:

    en.wikipedia.org/wiki/Drug_...

    Imbruvica is the brand name chosen by Pharmacyclics and is their property/ trademark/ etc. so no other company can use it.

    Imbruvica & Ibrutinib refer to the same drug.

    Len

  • Thank you for explaining that to me.. I wasn't sure and better safe than sorry

    BC

  • .. Me too.. But I think that's only for the first month just to make sure there are no problems.

  • Three capsules is the standard dosage for ibrutinib. It's what most people take.

  • I'm glad you are noticing an improvement so quickly. Did your doctor give a reason for starting you on two pills instead of the standard three? Some doctors are considering dosing by weight, but the data isn't in on how successful that will be. Perhaps your doctor is in that group.

  • I was on 3 pills for a month then I dropped back to 2. I was having some mental confusion which has stopped on 2. My blood count numbers had all come into the normal range when I dropped to 2 capsules.

  • Good luck with me 1st couple of days fine then I started with the joint pain wish was very pain full but came and went but 5 months on I have no side effects and everything is going well

  • This is good news to hear from someone that is farther along with the treatment. I am not loving the additional joint pain and I do hope it goes away.

  • Ibrutinib does respond quickly though I am surprised of the very rapid response reported, especially when the standard dosage is 3 pills of 140 mg each taken all at the same time.

    I'm curious as to why you are taking 2 pills a day?

  • My ONC felt hat based on my CLL profile that the 3 pill dosage was not necessary. I've read other resources that say the 3 pill a day regiment may be too much dosage for certain CLL patients.

  • I'd be very interested in reading some of those resources that say 3 pills/day may be too much for some CLL patients, David. I am looking for this info myself online. But if you have any link(s) you can share, feel free. I only weight 125 lbs, yet I am on same Ibrutinib dose that a 300 lb person would be. I realize the current notion is that Ibrutinib dosing is not scaled to body weight. But to me it makes sense that it should be.

    kim

  • Hi Kim,

    Here is a July 2014 NIH paper written about the Phase 1 dose determining clinical trial results.

    ncbi.nlm.nih.gov/pmc/articl...

    The sections on Pharmacology & PHARMACOKINETICS explain that Ibrutinib only remains in the body for a few hours, but the objective is to bind/block the BTK receptors on over 95% of the newly formed CLL cells each day.

    The section on Clinical trials says: Greater than 95% Btk occupancy was observed at ibrutinib doses of at least 2.5 mg/kg per day, and a 420-mg dose was chosen for future studies.

    Some doctors recognize that at 2.5mg/kg, someone your size- 57kg would theoretically need at least 142 mg of Ibrutinib, and so a single capsule per day would probably be inadequate, and a 280 mg dose would be a better choice.

    I believe there are some trials exploring mass based dosing, and many doctors will try to reduce the dose for lighter patients that have severe symptoms.

    But the FDA pivotal trial data that lead to approval used 3 capsules per day for everyone. Until there are trial results to confirm that a lower dose works on lighter patients the doctors will be reluctant to try that without having patients understand & share the risks.

    Len

  • Thank you very much Len! That was exactly the paper and data I was looking for.

    kim

  • I would be very interested in learning about the source of info on the 2x a day. I wouldn't mind taking less medication if less does the job. I don't have any other health issues, so this might be a possibility. Thanks

  • Is there a reason to take 3 capsules when 2 works just fine to keep my blood count numbers in check. The bio-lab passed along that I might not be taking 3 capsules all of the time. I am doing just fine after dropping from 3 down to 2 after 5 weeks. 3 was causing a lot of mental confusion for me.

  • Read Lenkeck's reply above. Taking less than three tablets a day is sometimes used to hopefully reduce the severity of side effects, but I understand that there's a concern that a lower dose may increase the risk of developing resistance. With less Ibrutinib, there may not be enough to hit all the new CLL cells...

  • I will keep this advice in mind. I have non-Hodgkin lymphoma rather than leukemia so there may be some difference in the treatment. From the beginning I was told that the dosage may vary at different times. I have also been under a great deal of stress running two businesses that had some tough situations of late - which have not been settled. For me if I cannot function in my business, life is not worth living.

  • Which non-Hodgkin's lymphoma there are many, including CLL/SLL. SLL and CLL are treated the same.

    Be careful not to compare apples and oranges...

    The correct dose in MCL is 560 mg or 4 pills ibr daily for example

    Waldenström’s Macroglobulinemia (WM) is the same dose as CLL/SLL

    ~chris

  • More discussion on the reasoning behind the Ibrutininb dose of 3 per day for CLL, including a very good technical explanation by Dr Sharman: healthunlocked.com/cllsuppo...

  • pkpayne and BCTexas,

    I hope things go well for you. I think I’m on the UK equivalent trial that you guys are on, called Clarity here.

    Started Ibrutinib (3 tablets) on 15/2/17 and Venetoclax on 10/4/17, so now at month 8. Had all tests done 10 days ago and heading to The Christie for the results review.

    I’ve potentially had a few minor/transient side effects over the months but nothing significant. To date nothing I could hand on heart say was a real side effect of the drugs for sure.

    best, rob

  • Rob

    Thank you for sharing your experience.

    I hope I have the same results as you. The trial I'm on is for two years. I take Ibrutinib for the first three months then I start Venetoclax and will be on both for two years.

    Brent

  • Brent, It is the same here, two months Ibrutinib followed by 24 months Ibrutinib + Venetoclax. Five week ramp up of Venetoclax due to it’s very fast reaction.

    best, rob

  • Hi All:

    I started on Ibrutinib today as well. I am on a reduced dosage of 2 caps a day for the forst month or two and then will be increased to three. So far so good. I am documenting my journey on my blog here: wetcoasters.blogspot.ca/

  • I'll definitely follow your blog. So I have got three doses in me thus far. Had a mild case of diarrhea yesterday and today some fatigue and achy joints. But honestly totally manageable. My large lymph node in my Neck is basically gone and my spleen has definitely shrunk. Couldn't even bend over last week:). Once my body gets used to the medicine I'm hoping any and all side effects subside

  • Great news! Hope it continues to work well for you!

  • I had to jockey the time of taking Ibrutnib because of drinking a full glass of water with it. I started in the morning and that seemed to mentally confuse me. Now I take it at 8 at night so that I can get rid of the excess water before I go to bed. There are side effects that you may notice going forward. For me it is patches of dry skin. Bruises that take longer to go away. Maybe more aches in my knees. And diarrhea is the worst. I have that down to a science now - the second trip to the bathroom I take 8 mg of ondansetron. Ondansetron is a medication for nausea used while on chemo. I don't need it for nausea but it does stop my intestines from over-reacting as it also dries up the bowel. One dose seems to do the trick. Otherwise I have had 24 hours of diarrhea at times which is horrible. The body throws off the excess from ibrutnib in fecal matter. And that fecal matter burns my behind.

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