Been on 420 mg daily for almost a year. All numbers are good according to my oncologist.
Here's my question... has anyone gone to acteduced dose after improved numbers?
And if so when and to what dose and outcome
There are a couple reasons for my question... 1)just to know 2) looks like my insurance is going to raise my copay big time
I'm very interested to hear expert opinions on this. I am also just about to hit the one-year mark on Ibrutinib, however my WBC etc. are still not in the normal range yet -- but they are getting closer. And potential insurance issues threaten to dictate the career direction and in fact the country I live in for the rest of my life.
onlinelibrary.wiley.com/doi...
Interesting, but I would also like to know the genetics of the people in the study and how that affects response. Genetics seem to be everything!
I am in the U.S. Due to severe neutropenia from Treanda it Rituxan, no one is sure which in 2014. I was on Prednisone for2 years (not recommended due to muscle wasting and potential cardiac issues.) in 2016 started Ibrutinib140mg One a day. Hospitalized at Day 6 with swollen hand. Off med until November back on Ibrutinib 140 mg every 3 days. Axial lymph nodes recededad well as neck nodes. I have an 11q deletion, age 74. Off Prednisone January, 2017. Multiple sinus, GI and URI for 4 months. If 225 - I agreed to IVIG infusion 3 weeks ago. Feel ok now except for joint pain. WBC 4.1, platelets 128. Going to DF in June for 2ndvisit with CLL specialist, this time armed with greater knowledge of this disease thanks to the courageous people on this site who have so selflesslyshared their journeys with us.
In April of 2016 I started on 3x140 pills/day of Imbruvica. Platelet counts went up from a range of 2-40 to a range of 50-70 within 3 months. But, I had severe fatigue and frequent sinus problems. After 8 months the doc cut me to 2 x 140 per day. My platelet counts have stabalized around 100-110 and the fatigue is a bit better.
I've been hoping my dr. would cut my Ibruvica to 2 a day, but he doesn't seem to want to. I see him every 2 months now, instead of once a month, my blood work is normal, my immunologicals Igg, etc.) are still low and my platelets are not in the normal range yet but close. Sometimes I wonder if the Imbruvica after a year or so isn't hurting me somewhat and I'd love to just take 2 a day, but I wouldn't do it without my Dr. approval. Never know what to do.
I would also like to reduce the me..my oncologist says "No" It's working. If at any point I stop, I'm concerned that I won't be able to afford it again, if needed.
There is that too..........not being able to afford it. It's a shame that they have these drugs that are so expensive my Dr. told me at the very beginning when I asked him if I could afford Imbruvica, he said, nobody can afford it. I mean, really, how much money do the drug companies have to make?????? Greed rules the world I guess.
I just saw my Oncologist and asked him that same question. He said as long as I am doing well on this med and tolerating it I would stay on 420. Evidently he has had people flare on the disease with lowering or stopping this medication. I have a friend that also is on this med and had a huge jump in his out of pocket and after our oncologist talked to the drug company and they were able to get him set up with a foundation. Our oncologist is very proactive.
Mine is proactive as well, and they did find a foundation to cover it, but will they find one next time or the time after that, etc. etc.???
Besides the cost consideration for reducing dose, I wonder if there could be a side effects consideration for reducing dose. Such as the cumulative effects that may cause A-fib. I believe I saw Dr. Furman once say that the cumulative effects of Ibrutinib were a reason for not starting the drug earlier in the desease.
john
Thank you all for sharing your situations. While I have been told my specialist won't treat me with Ibr (age/comorbidities), I remain interested in just how viable the "new, novel" drugs will be in light of the "forever" and cost issues we face.
As is the case with CLL, ibr does not act the same in every case; and the need for withdrawal or reduction has difficult to discern outcomes. Each patient is a trial of one on any of the treatments it seems.
I am almost made ill by the amount of advertisement directed at patients to "talk to you Dr. about" the medications being touted. That money could be better used to bring down the cost of the drug.
Again, thank you for sharing your situations. Your openness with information is a benefit to our whole cohort.
I have been ibrutinib since Sept. 2014 (420 mg) daily. A little over a year later my onc. reduced it by 1/3 and then a gain about 3 mos. later down to present level of 140 mg daily.I have been here for a while now and am doing fine according to blood counts. Although I was off for about 3 days and my counts did start to climb back up; nothing serious and came back down on restarting meds. I would also suggest that people get copies of their medical file to carry and /or have in case of emergencies.We may not be in some way to communicate the info needed in case of an emergency.
Thanks I'm going to bring it up again with oncologist
I too went off Ibr for 2 weeks when counts normalized but symptoms returned, nodes, etc. seem to be ok now, counts ok, having Ig level checked next week prior to 2nd IVIG infusion. Unwise to stop Ibr without a plan. My hem/onc and I are partners - I'm an R.N. doing a lot of research on my case now.
I started imbruvica a little over 3 weeks ago and am only taking 2 pills daily. My doctor wanted to see how I handle it I guess. First week was a breeze however then the joint pain and swelling kicked in. Someone else on this site referred to it as pin ball machine pain and that is a fact as it moves around your body. Wrists were very swollen and painful for a few days and now my knees and elbows feel like they are bruised. Hoping it stops soon.
I have also been on 420 mg daily for almost a year. When I started, my WBC were 300K and everything was normal after 7 months. I have an excellent hem/onc, but I also went to Ohio State Univ for a second opinion. The hem/onc there said to not drop the dosage because it could give a rouge colony of the bad cells an opportunity build resistance and grow. For what its worth, I was off Imbruvica for 5 days (colonoscopy) and had bloodwork done immediately before and after. There was no change in my numbers. (Actually, they got a little better/lower in the normal range. Hope this helps
My dose was reduced to two pills a day because of severe soreness in my mouth. Couldn’t eat! So far my blood work has remained stable. Unfortunately, the mouth trouble started again after taking Imbruvica for 7 weeks. Don’t know what to do about that other than mouthwashes which you can’t use while you’re eating.
There are studies of reduced dose ibruciva (you can google these). So far no difference has been seen as long as initial month followed full dose regime. These of course are shorter term studies, but I started to take only 2 instead of 3 pills daily in my 6th month, and my blood pressure spikes are reduced and also the number of painful muscle cramps have become noticeably fewer. Also I feel better all round including reduced bp. I will be getting blood tests soon to see if this has resulted in any changes. Will report back to this forum.
Reduced Dose of Acalabrutinib
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