Melinda
Great to hear that the culprit wasn’t side effects of the calquence. Hate to hear about the colitis. Hope it gets cleared up soon. You’re a real fighter. Hang in there. I’m not on the med but oncologist will decide if it’s time in my visit next week. You should join the calquence group. Lots of info there about the med. keep in touch

Well now 15 months into my use age of Calequence, my Drs believe my month long issue with EXTREME diareah and 5 days in the hospital last week, is the sign that the treatment is “no longer working”, which was my biggest fear, since it has been so good. I did know from my research, that the BTK blockers, “work until they don’t” and I’m in the mid timeline of its general expectancy of being viable. Now I’m researching some of the clinical trials of several “boosters” and asking my oncologist about if I might be a good candidate for being in such a trial. I meet with her on Friday(7/21) to hear her suggestions for the “next” treatment plan. I’ve been off the Calquence now since 7/5, and recently discovered a new bump behind my ear that I wonder if it’s a lymph node tumor as it’s very tender. I don’t know if traditional chemotherapy is good for this, one of my questions for tomorrow, but I do know I want that to be my lady option if there are things that can boost the BTK blockers to extend the use of such treatments.
Fortunately, my GI issues have slowed down with anti-diarrheal medications and are less “soupy”. And maybe it’s the added medication, or the removal of the Calequence at this point.
I hope this “update” helps you in
your research and treatment plan options.

Melinda
Glad to hear that you’re doing well with the Calquence. I’m not in a hurry to get on the med because of side effects and possibility of reducing WBC too low and bleeding. Oncologist will let me know on August if he thinks it’s time.

Hi Cathy2
Si sorry for your loss. I joined the calquence team and have read of many side effects which doesn’t encourage me to get on the med. Each body is different and will react differently. It seems to be a miracle drug in controlling the CLL/ SLL
So when the oncologist decides it’s time for me to take it, I will send up
Prayers to God and give it a try. Sounds like you’re only taking your med once a day. I was told it’s to be taken twice a day. Any way, glad to hear that it’s working for you.

What’s cool is that it’s a pill now and not the capsule. The capsule formula had to be taken separately from any other medications (such as antacids ie the sodium bicarbonate I take twice a day). The new pill formula can be taken at the same time as other medications so it’s way less complicated than when I had the capsules. Managing the timing with the other medications for my kidney damage was mentally exhausting. It’s so nice now to just do them twice a day ! I do my meds at 8am and 8pm and the results are a miracle! I’m getting back to “Living the life Love, and Living the Life I Live! The minor side effects are easy to deal with. That bit of morning coffee gets rid of the small headache I get in the mornings. Then good all day!
I do get regular labs and have had to get an occasional PACKED RBC transfusion (about 3-4 months apart) for replacing blood that the BTK blocker is killing off. Not chemotherapy that kills everything and has do many worse side effects.