Zanubrutinib and ACE inhibitors

[Fogey]

I am approaching the start of treatment for the first time. I have for many years been taking an ACE inhibitor (perindropril) for high blood pressure, which is now well controlled. I have CLL, my lymphocyte count is doubling quickly (~2 months) and my haematologist is considering options for treatment. In particular, she is looking at Zanubrutinib or V & O. However, she has mentioned that taking Zanubrutinib along with ACE inhibitors can involve a chance (maybe ~5%) of serious heart problems, including “sudden cardiac death”. Should I try replacing the ACE inhibitor with an Angiotensin receptor blocker (ARB) prior to starting treatment?

I have many years ago also had a couple of bouts of AF, now well controlled by medication, and I also have some current evidence of mild heart failure (swollen legs/ankles). Can anyone advise? Should I opt for the BTKi option, V&O or just shoot myself? 😉

[cajunjeff]

Hello Fogey. More and more we see people being offered either a btk drug alone or V+O as their first treatment. I suppose the reason so many doctors present these options to us as a choice for us to make rather than recommending one over the other treatment plan is that doctors are seeing these options as being near equal in terms of efficacy.

I am on a btk drug alone and it works very well for me with minimal side effects but I think has raised my blood pressure and I am now on bp meds and doing fine with them. To my understanding all btk drugs, even the new ones, carry at least some risk of cardiotoxicity and causing or aggravating afib. It would seem to me that might be a tiebreaker for you on what drug treatment program to choose, that is, since you have a preexisting heart issue, pick the treatment with the least risk of heart issues.

Your doctor seems to be steering you that way. I might ask her, if I were you, what drug she would take if she were you, knowing you have had afib. It’s usually not an irrevocable decision in that if you cant tolerate one treatment program they will likely try another. So many people are doing so well on V+O, it might be the only cll treatment you ever need depending on your age.

[Fogey in reply to cajunjeff]

Thanks for that very sensible-sounding reply, cajunjeff. I will ask my haematologist that question. Unfortunately, I live in a remote rural area, around 3 hours drive from the hospital haematology centre so there’s a huge attraction in taking a btk drug as a capsule at home than going through the initial hospital-based palaver of dose increase and infusion.

[mrsjsmith in reply to Fogey]

Fogey as you live some way from your hospital the daily pill sounds a more attractive option because there is I hear a certain amount of hanging around with V&O. I am on Ibrutinib and found Lacidipine has been excellent and my BP is in the normal range.

Agree with G1llHa1n and option 3 sounds rather messy. Good luck with making your decision.

Colette

[Fogey in reply to mrsjsmith]

Many thanks, Colette. Very pleased to hear of your experience. I really fancy just taking pills at home but not so keen on the sudden cardiac death side-effect! 😂 I’ll talk some more with the medical team. Best wishes.

[G1llHa1n]

Shooting not recommended: after-effects can be so long lasting🤪

[Fogey in reply to G1llHa1n]

😂

[CoachVera55]

Hello Fogey, I too heard that sudden death possibility even though unstable angina was the only heart issue I ever had 10yrs ago when I suddenly lost my Mom. But low & behold, Zanubrutinib full dose caused Pleurisy, left untreated went to Pneumonia & Atelectasis. Still under treated led to Pulmonary Edema. I did not recover properly until a friend got her doctor to order me a 10 day dose of antibiotics.

Now fast forward to my next 3 months of uneventful progress on just 80mg daily of Zanubritinib. WBC of 118 are now 18 & ALC 15.5, Hgb 9.8->12, but Plts 76->89 aren’t moving much. No chestpain or crazy bone pain or headache like Acalabrutinib caused. I believe a 1/2 dose of Zanubrutinib would be a good start since its great at dose reductions. I just moved up to 1/2 dose myself & so far so good. Zanubrutinib is a strong drug with quick results in my limited 6 month experience. Compromise is where everyone wins, so Best of Luck 🤞🏾

[Fogey in reply to CoachVera55]

Compromise is a great policy. I’ll suggest it as a possible start to my haematologist . Many thanks for taking the trouble. I really hope you keep up your good progress after a dodgy start on full dosage. All the best.