Donna, I was diagnosed with CLL in Dec 2024, though for about 6 mos the doctors suggested watch-and-wait. After my platelets got down to ~100, the doctor recommended treatment, and I entered the trial and was a lucky (?) winner, and I started with nemtabrutinib in Sept 2025. I have been taking 65 mg/day for most of this time.

I am lucky and have no symptoms from the CLL yet--I only know I have it because of blood tests. The nem (I'll call it that for short) has caused some minor symptoms, such as constipation and a metallic taste in my mouth. I've used Miralax for the former and the latter seems to have decreased over time (or I'm just getting used to it).

I have noticed my BP going up (I've NEVER had high BP in my life) and it's occasionally reached ~150/100, which prompted the doctor to take me off of nem for about a week in March. My BP seemed to drop immediately, and after 8 days I started the nem again (same dosage). I've watched my BP carefully since then and it fluctuates quite a bit, but seems to average 135/85 or so, which I think is acceptable to the docs.

My WBC went up immediately after starting nem, from ~100 in early Sep to over 350 (!) in Nov, and my platelets went down to ~60 by the end of Sep. But they eventually started in the right direction, and my WBC reached 107 in April and my platelets have hung around 130 or so since January.

I will see the oncologist again at the end of May and am hoping for continued progress. I still feel fine (69 yr-old male) and wouldn't know I had CLL if they didn't tell me.

I'm glad to know someone else taking nem. Please let me know how it goes--I'm pulling for you!

Thanks. I do report to the Trial Nurse by text message and I also take a list of things that aren’t normal for me to my monthly appointments where I see either my oncologist or his Nurse Practitioner. They may be getting too much information from me - 😊

The questions my oncologist had about my bloodwork did not revolve around my white count, but around my ling term (2 1/2 years) anemia and low platelet count. He ordered CT scans and a bone marrow biopsy with molecular analysis. It was the bone marrow biopsy results that resulted in a change in my CLL stage from Stage 1 to Stage 3.

I don’t have any experience but maybe talk to your oncologist more about your side effects from it?

Thanks for your outstanding report on a new BTK inhibitor. I had the high blood pressure ill affect with Brukinsa but finally the right medication has me 100% normal blood pressure. I have also developed a strange cough which is another ill affect. I stopped taking the drug and a month later the cough stopped. I now take Brukinsa at 50% dose or 160 mg and no cough and my blood test is 100% normal and WBC count is at 7,600. My question is the new medication covalent or non covalent? Covalent means it directly attaches to the cells. Non covalent means it "blocked" the attachment area. Both medications kill bad cells. I have a 9 minute view which explains these two different BTK inhibitors : https://cllsociety.org/btk-inhibitors-in-cll-sll/

BTK Inhibitors in CLL / SLL

https://cllsociety.org/btk-inhibitors-in-cll-sll/