Starting Ibrutinib

Hello all, I've been w&w for 6 years and now have several bothersome nodes, severe fatigue and labs are indicating CLL progression. Due to my non-mutated status the doctors at MDA gave me the choice of ibrutinib, or a trial of ibrutinib w/ venetoclax. I opted for the ibrutinib alone and will start next week. As a preventative measure I started acyclovir and allopurinol this week to help avoid shingles and rising uric acid levels. I was just wondering if anyone could share their experience of the first few months on ibrutinib? Other than the fatigue I have been able to do most of the things I love to do and I'm wondering if there's a good chance that will continue during my first few months. The doctors said I may feel worse before I feel better and there is always a concern for tumorlysis. Would anyone be willing to share their experience?

Thanks in advance!

19 Replies

  • No experience just hope all goes well for you. I am W and W.

  • Thank you. I wish you continued wellness on w&w.

  • I was able to do a lot on ibrutinib but pain in knees wrists etc occurred regularly unpredictably but only ever for 1 to 3 days in any one place. Had it for nine months. Some people last years. I got colitis after nine months. That's probably 1 in 1000. I also had diarrhoea. Used Imodium.

  • Hello. I have been on Ibrutinib for almost 2 years. It has been like a miracle drug for me. All my bloods are now normal, I had a very heavy load of large nodes everywhere which have now disappeared and I feel totally back to normal energy levels. I have recently had 2 episodes of shingles so back on acyclovir- otherwise no other adverse effects. I hope your treatment is as successful as my own- good luck👍

  • Thanks for the reminder about the Imodium!

  • I am on my 3rd month of Ibrutinib and have had no side-effects, except for a bit of itchy skin now and then and very occasionally some skeletal aches. Nothing to worry about. All the nodes have gone down and the blood count is just about normal. Fatigues is gone and I have initially lost some weight (because of all the nodes going down and white blood cells being expelled from the body) but have picked up again. I am back at the gym and look better than I have been for years. It certainly works for me!

  • What an encouraging reply, thank you!

  • The Allopurinol should help avoid tumorlysis as well as treat the rise in uric acids. That was a part of my FCR treatment as well, and for the same reasons. Best wished for the treatment.

  • Thank you Rafe, best wishes to you as well.

  • i started on August 3rd of this year. i have had a little nausea which I fixed for the most part with drinking a gallon of water a day. I also started with having diarrhea and I take a half of an immodium. I am tired but they say nthat is the norm. I also have some edema which I just use an extra 20 mg of lasix once or twice a week. My hair has ceased to grow. usually have to have a haircut every 3 weeks and haven't had one yet since starting! Hang in there.

  • Thanks same to you!

  • I've been on Ibutrinib since July 1st. My lymph nodes ( about size of half golf ball) began shrinking in 3 days and at 2 1/2 months Dr advised they were essentially normal in size. Blood at last test was about stable for all things considered. I've not had much loss of energy but do require more sleep than before diagnosed. Only a couple incidents of diahrea, minor and Imodium took care of it. Currently dealing with a severe case of sciatica but not sure that is related. I am taking an antibiotic to protect from infection. Pretty easy treatment but ugly exoensive.

  • Thanks RJR1. I know what you mean about the cost. We're you able to get the manufacturer's assistance program?

  • Got some help from a foundation. Oncologist set that up.

  • HI I have been on it for about 20 months and am so grateful that I have this medicine. I was so much better within days.

    Yes my white count went to 128,000! But - oh well. It eventually came down after months. I also had sneezing fits in the first month or so.

    I always make myself drink about 12 ounces of water when I take the pills to help me get the extra water in that you should take even after you get through the initial tumor lysis risk period.

    My worst symptoms are terrible finger nails and periodic migratory arthralgia /tendonitis. But that pain only lasts 2-5 days so it is worth putting up with that.

    There is a more recent side effect of atrial fibrillation for which my doctor told me to go straight to the ER if I get it. Haven't had that thank God. But I think if you get that you might have to go off it.

    Also you need to watch out for bleeding but you get that monitored with your regular platelet counts.

    Going to Dermatologist too because I guess it is going to increase skin cancer risk. Already have had all three types but had them before ibrutinib.

    I am 57 and still have a teenager at home so I pray that Ibrutinb works for ever! (or atleast a good number of years LOL!)

    God bless you.

  • I'm 53 and hoping for good results. Thanks for your reply!

  • Hi KimiD,

    I have been on Ibrutinib as part of the R&R (Relapsed Refractory) Clinical Trial at OSU since June 2011. I never dealt with fatigue prior or during Ibru use. Keep in mind that we all react uniquely to both our CLL and any treatment protocol.

    The most notable effect initially was how quickly great the vast majority of patients, to include myself, felt as Ibru (then PCI-32765) began to work on our CLL cells.

    I had several troubling side effects that nearly got me taken off Ibru but I lobbied hard to allow me to continue after compromising on a reduced dose from three capsules at 420mg daily to 280mg which I am still on today.

    While TLS (tumor lysis syndrome) is not an issue with Ibru I had prior permanent kidney damage from previous treatment with FR and HDRTX therapies. I also had prior heart arrhythmias which escalated into severe right atrial flutter requiring an ablation and eventually in 2012 a PM (pacemaker implant and AV (atrial ventricular) node ablation that stopped A-Fib events. I may have been more vulnerable to heart issues because of prior chemo regimens and having a below normal heart rate at rest (45bpm).

    I had angioedema (facial tissue swelling) which began on lower lip and popped up on both temple eye orbits that may have been part of an interaction with an ACE inhibitor I was taking at the time known for causing that type of reaction. I experienced some loose stool in the first few weeks and an increased tendency to bruise easily. Cuts take a long time to heal but that has not been an issue even though I am on a full strength aspirin (325mg) daily with platelets stable in the mid 80s (normal low reference range is 150).

    It should be noted that some patients will see a return to normal platelet counts while other like me will see a negative effect on platelet counts. My two surgeries for heart ablations and the PM were uncomplicated by the low platelet count. I never had the pain experienced by some patients. I remained totally pain free.

    The one side effect that nearly got me kicked off the Trial was severe eye irritation characterized by dryness. At that time we lab-rats were being monitored regularly for any signs of corneal clouding that happened to dogs in the animal studies. I was on Restasis (steroid eye drops) for a time and was the main reason for the Ibru dose reduction. It took several months to resolve but I have no damage or problems as a result for over 4 years now since symptoms abated.

    The only lasting negative side effect is brittle fingernails. I take Biotin which definitely helps. My CLL Bear that has been aggressively dancing with me in the past is in a pretty deep hibernation with only a small colony of cells seen by special tools (flow cytometry).

    Bottomline: No regrets, Ibru saved my bacon! Great quality of life at 73yrs.


  • Wow, you've been on quite the journey! Thanks know you for all of this information and wish you well.

  • For seven months I had significant joint pain on Ibrutinib but it has now subsided - now I get the occasional muscle cramp in legs, feet, toes, and hands. I also now have skin hyper-sensitivity but will be seeing someone in a couple of week to resolve this. My numbers took a while to start coming down - they actually went up and have plateaued which is not uncommon apparently. The hardest thing is having patience. Hopefully they will start coming down more dramatically. Lymph nodes did shrink and all other numbers are good such as platelets and hemoglobin which are going in a better direction than before. Drink a lot of water 2-3 liters - I infuse mine with lemon or fruit. I'm feeling really well and wish you the same!

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