I've been on Calquence for about 1.5 years. Started with 1 pill 2x daily and eventually cut back to just the evening dose. The morning dose was more than I could handle. Messed up my stomach, digestion and I got so tired that I couldn't really accomplish any thing during the day due to extreme fatigue. I've been on 1x evening for about 5 months now and am tolerating it much better. ALC went down to 4's and know bounces between 6 and 10 but pretty steady I think. Last night I think I took two tablets instead of one. Horrible anxiety and severe nocturia. I take the pill normally around 7 and during the night I have pretty severe stomach cramps and frequent urniation to the point to where I really don't sleep. Any thoughts or similar experiences from others? I also take flowmax/tamsulosin and refrain from liquids at least 3 hours before bed. Seems caluquence puts my body into overdrive
Accidently took 2 Calquence tablets last night... - CLL Support
Accidently took 2 Calquence tablets last night instead of one
It seems like it should not be so hard to just take pills but I put them in the days of the week containers because you do it so often, it is hard to remember 🤷🏽♀️ It won’t hurt you especially since that is the just full dose. So sorry you are having such symptoms still, I too can not tolerate the BTKIs. I went from 320mg of Zanubrutinib to 100mg of Acalabrutinib & now on 80mg of Zanubrutinib. So full dose to 1/2 dose to 1/4 dose & it is working so good. They really affect my bones & joints tho & I am semi back to working out & this is my new normal. I have multiple drug allergies & don’t do well on medication #GODSPEED 🙏🏾
I too have done that - once! I went to bed extremely anxious about what I had done (I even wrote a note saying what I had done and left it by my bed🤣). No issues at all but I won’t repeat the experience!
That's an interesting point about night time bathroom visits! I have taken Acalabrutinib/Calaquence for two years now. I have tolerated it very well and my blood numbers are considered within the normal ranges. I saw my consultants deputy last Monday and all was well, nothing to worry about. However, you have me thinking now! I take my Acalabrutinib about 7.30am before breakfast and again about 7pm before dinner. I too am up at least three times during the night, with a full (really full) bladder. It doesn't make any difference as to how much I drink in the evening, it's still the same. I usually go to bed about 10pm, so a bathroom visit prior to that, up about 11.45, again 1am then often 3am. I nearly always need to run again about 6.45am. I often stay up then. What would I give for an unbroken night! Like I said, input doesn't match output. For instance I came in from the garden about 5pm yesterday and had a cup of tea. Two small glasses of Sherry (Saturday treat) and a glass of sparkling water between dinner and bedtime. Still up with my usual wandering. I wonder if it is the Acalabrutinib which is flushing my body and if changing the time I take it, would make any difference. The thing is, I take it twice so my timetable works in one sense but I would like a good night's sleep. I might run it past my CNS.
Me too kitchengardener2! 3 times a night regularly - starting around midnight. I take my Acalabrutinib at 9 am and 9pm.
I am wondering whether to try changing the times to say 10am and a 10pm. Thinking down the lines of if the medication is taken 3 hours later maybe, just maybe the bathroom visits might start 3 hours later? I won't try this until I have asked my CNS. It will still be a twelve hour window. I'll follow you and then you will see any follow-up.
I too have numerous visits to the bathroom at night, I also have the issue during the day, many visits to the bathroom. I never venture out without added protection (Depends), because of Covid I will not a use a public washroom, the times that I indulge myself and go into a mall. I have to tell myself that it is a small price to pay taking the BTK's and drinking loads of water.
I too am reluctant to use public washrooms. It's something I have been more careful of since covid and if I do I make sure that I have a mask on and spread toilet paper over the seat. I am somewhat neurotic about clean bathrooms and kitchens, I use gallons of bleach cleaning everything down.
I take daily tamsulosin for my BPH. No BTKs. What does your urologist say to your frequent bathroom trips during the night? Looks like your prostate needs a checkup ASAP.
I’m also on acalabrutinib, and I too have my sleep disturbed every night with the need to go to the toilet, I am also on tamsulosin and finasteride because of enlarged prostate, but they don’t seem to make any difference to my interrupted sleep, I wonder now if the acalabrutinib is somewhat responsible.
Dave.
Couple days before I took 2 calquence tabs accidently I stopped FloMax/Tamsulosin, as I didn't like the side effcts (many). Also I've been doing lots bicycling as of late. Since I stopped Tamsulosin, the BPH symptoms came right back.......and so I started drinking less water from my normal 2+ L/day. DUMB
Yesterday afternoon I had severe back back pain and chills, still felt shaking cold in a hot bath, cloudy & painfull urine. Fortunately I feel much better today (pounded the water through the night), and have taken 2 doses of tamsulosin. I'm gonna call the urologist tomorrow as I think I've developed prostatits. I think I've actually had it for a while but with the bicylcing and water cutback it brought it to an acute level. I was thinking of sticking to the Calquence in the evening and doing the tamsulosin in the AM. I do think because I have slightly elevated ALC that taking the double dose also brought on more frequent urination as there are more bad whites to get out. I remember during my first chemo Tx many years ago when I had ALC in the 400's that during Tx I had to urinate every 15 minutes. Trying to make sense of all this and find the best approach for me. Perhaps I need to go back to 100mg/2x/day?
I may be the only one that seldom gets up in the night to pee. I have been in remission taking alacabrutinib since 2020. I drink 16 oz of water with my pills and try and drink during the day. I take several day trips to the bathroom however seldom at night and I go just before bed. I take my pill around 8 or 9 and go to bed at 10:1030. I also use a pill container to keep myself on track. I don't eat after 5-6 pm that may make a difference.
Stopping flomax was huge mistake. Ended up with a UTI that turned into sepsis and I spend a week in the hospital!
Coming off Ibrutinib while awaiting next treatment.
Psoriasis post-treatment
Body temperature very unstable with fever and chest infection
WBC & ALC dropped dramatically and I feel absolute rubbish
Debilitating Stomach Pain
