Zanubrutinib and water intake and sodium level

[Bethsaida]

I am a 78 year old woman who has been on a very long watch and wait since 1999. I was diagnosed in 1998 and given a small amount of prednisone and chlorambucil and have received nothing since except ivig which started in June2021 due to infections. My watch and wait is over as I will be starting treatment due to increasing wbc and absolute lymphocytes, as well as pretty drastic weight loss and fatigue. I will be receiving Zanubrutinib delivered to my home after a speciality pharmacy makes a call and sets up the process. I will also take the antiviral valtrex daily. One of my concerns which of course I will discuss with medical staff is the fact I basically have only one kidney that works pretty well as the other was damaged severely by a blockage in childhood but still works at approx 10% level. I have creatinine level of 1.3 to 1.4. Whenever I drink the amount of water which will be needed on Zanubrutinib my sodium level goes very low to 130 or less. Has anyone had this problem and how did you deal with this? I know sports drinks can help but I really don’t want to have that much sugar daily. Also, for those who take this drug do you have any suggestions as to when to take it? I am supposed to take 4 pills at once whenever I choose during the day as long as it is consistent. Any other information you can share will be appreciated.

[SofiaDeo]

If it's only sodium you need more of, perhaps a bit of salt in your water might help. Discuss this problem with your nephrologist, they may want you to adjust the fluids slightly. And they may want you to have a bit more monitoring early on than is usually done with zanubrutinib. If you happen to react strongly to the med instead of slowly, that will stress your kidney a bit more. Your nephrologist and hem-onc may want to discuss a "non standard" induction for you. If I was your pharmacist, I would also recommend you start on a Mon or Tues, so *if* there were questions or concerns, or extra monitoring recommended, you aren't trying to do it over a weekend.

I say this as someone who is "super conservative" when it comes to managing risk. I assume the worst most awful things possible, and what would I do if it happened, then plan things accordingly. Not intended to mean "this is likely to happen."

[Bethsaida in reply to SofiaDeo]

Thank you

[Britam]

Bethsaida,

I started taking Brukinsa ( Zanubrutinib) on March 9 this year. I take two of the four capsules after breakfast and the other two twelve hours later after my evening meal. I prefer to take them after food and I have not had any stomach issues from the medication. I follow the directions to drink a full glass of water when I take them and also drink water throughout the day. I set an alarm on my phone as a reminder for the morning and evening doses.

I was also taking allopurinol from a few days before beginning Zanubrutinib and up until this week until the chance of tumor lysis was over. (Tumor lysis happens when cancer cells, under pressure from chemotherapy and other cancer treatment, fall apart and flood your bloodstream with chemicals and toxins faster than your body can get rid of them. Tumor lysis syndrome is a group of conditions that affect your heart, kidneys and muscles.)

If your doctor has not mentioned taking allopurinol you might want to ask if it might be appropriate for you to prevent excessive uric acid when the Zanubrutinib destroys the cancer cells.

I was getting weekly blood work for the first few weeks to monitor all levels, especially the uric acid level. I am now getting blood work every month and eventually that will go to every 3 months.

By the way, both Gatorade and Powerade make sugar free sports drinks if you are concerned about the sugar content in the regular spirts drinks.

I hope all goes well when you start your medication.

[Bethsaida in reply to Britam]

thank you so much for sharing your experience

[Ladylin151]

If the sports drink's only issue is sugar, there are non-sugar drinks and to take it a step further, there are "electrolyte replacement" powders that have no sugar but Na K and Mg as well as flavorings. ( My favorite is LMNT) They get as exotic as "chocolate habanero" and generally have a more therapeutic dose than a sports drink. I would discuss with your specialist if anything like that is a good idea for you. Hydration is a balance for everyone and isn't just water and salt.

[Bethsaida]

thank you. I will ask about that

[Gretsch6120]

I have been on Brukinsa for almost a year now. Went from 295,000 WBC to 12,000. Great medication, no side affects. Same four tabs once a day. I take them with breakfast, and just have my usual breakfast coffee juice etc. No extra fluids. The Med has been amazing with no side effects. Had bad side effects from imbrutinib, changed to Brukinsa and all went away. I have no uric acid issues. Everyone is different however you should do really well n this Med.

[Bethsaida]

That is so good to hear. I would love for my experience to be as good as yours.

[Ibru]

you may want to consult a nephrologist. Some people (not necessarily CLL patients) need to take salt pills to maintain their sodium level.

[CoachVera55]

I started Zanubrutinib April 24, 2023 its been a week but I did notice a slight but painful tingling to my fingers on my right hand. I was treatment free for 13yrs 8mos & never wanted to start treatment. My downward lab spiral made it clear that it was time. I fight to get 1 gal of Water in & usually hit 90ml on average. I take 2 tabs twice per day like 12hrs apart. I feel a decrease in lymph nodes internally/externally & specifically around my enlarged spleen. I will ask for a uric acid level. I felt a bit unattended but the Pharmacist was excellent. I called her 5 days after starting to make sure I was taking right, since I take 2 sets of supplements & a new cholesterol med that lower my numbers in 3 weeks (that’s another story). She was so pleased about my progress & high tolerance. I might have labs next week & I see him in 1 month. Congrats on that long W&W🎉🎉🎉 #GODSpeed🙏🏾🙏🏾🙏🏾

[Bethsaida in reply to CoachVera55]

Thank you for sharing your experience.