Anyone have chronic lymphocytic leukemia (CLL)?

@mrgreentea
I am on the same medication and was told I could take both pills at the same time and that it was not necessary to spread them twice a day. I double-checked this with my doctor and with the company that makes the medicine. It still makes me wonder why others are told to take them twice a day. confusing

Hi @barbeeh51 Truly, I know what it’s like having a diagnosis where you’re starting from scratch with the information! I had my own story 7 years ago with a highly aggressive form of leukemia. Odds were not in my favor but I’ve never been one for statistics. LOL. Anyway, I’m now 72, alive, kickin’ and healthy. I’m here to offer support, encouragement and support with the information and knowledge I’ve gleaned along my journey.
I gave my doctors a run for their money. 😅 But, I also learned from them by asking questions. I had so many specialists from oncology/hematology to bone marrow transplantation and beyond! Each and every one of them encouraged questions. There is no need to be timid around doctors! Just be direct and matter of fact!

It can be very helpful when time is short in the appointments, to have your questions written down in a little notepad or on your phone. I know how easy it is to get sidetracked with questions and answers. So those little notes can help keep the train on the track. Also handy to have the notepad to make notes during the appointment!

With followup blood testing monthly, that tells me your husband’s doctors aren’t anticipating dramatic changes in his numbers. Monthly is close enough to be monitored for any changes and to then plot trends in test results. Doctors will look for trending numbers either going up or down depending.

So for now, I’d say just enjoy the lovely summer. Encourage your husband to take some walks and try to keep his life activities normal. I know fatigue is his buddy right now and that can be challenging for an active person. But encourage him to listen to his body. If it says NAP, then nap it is! ☺️
Please let how his next appointment turns out, ok?

@califirniagal
My understanding is that once a day is to make it easy on the patient, and that twice a day spreads out the medicine so you have better coverage throughout the day. I asked my doc & he wanted me to take it twice a day. I take it at about 8am and 5:30pm each day.

Hello, I want to know if anyone have tried Keto Diet as complementary treatment for CLL?

@barbeeh51 CLLM is an odd acronym and I have not seen it used before. Are you sure that's what his record showed? Could it have been CMML (a different leukemia)? If it is CLLM then I'm wondering if it is CLL-M which may mean CLL mutated-IGHV (usually abbreviated mCLL) which would at least indicate they did IGHV status testing. IGHV testing is the most prognostic of the 3 tests you mentioned. FiSH is interesting, especially if it shows deletion of 17p and TP53 testing is important for making treatment decisions.

@mrgreentea
Thank you for your information. i did wonder about the coverage and specifically asked and was told it did not make a difference. I'm still confused and will try to ask a CLL expert when I can.

@califirniagal I have been taking ZANUBRUTINIB for nine years. 160 mg twice a day. But I have heard of some people taking all at once. Check with your doctor, but I don’t think it makes a big difference.