I had my pharmacy Dr appt where they tell you all about the drug (zanabrutinib). I've taken 2 doses so far and no issues. I do have some questions for the group for anyone taking a BTK inhibitor. Does anyone do the following (this was recommended by the pharmacy):
1. I was told not to touch the pills. Pour four pills into a medicine cup and then into mouth.
2. I was told to wash my hands with soap and water after taking the pills if I touched them.
3. I was told to flush the toilet twice after going the bathroom.
4. I was told to wear latex gloves when I clean the bathroom.
5. I have a septic system and was told to make sure they don't empty the tank all the way because you don't want all the "flora" to be removed.
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MyCLLJourney
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SofiaDeo can better answer your questions, but they sound like general 'chemo' advice rather than advice specific to BTKi therapy. With respect to (1) you are going to absorb more of any BTKi on the capsule surface from your moist mouth, throat, etc than you are from your hands, though (2) it makes sense not to spread any BTKi around further.
(3) and (4) are more appropriate advice, because most of the unabsorbed BTKi and metabolites are excreted from our bodies in our faeces.
(5) makes sense; it takes a while to establish a working septic system biota.
I think you got "standard chemotherapy" advice, which is critical with a tablet dosage form specifically. Capsules don't tend to bust open, but it's still possible to have drug residue inside the bottle/on the capsule surface. The idea is to not have any drug on your hands, and then touch your mouth, eye, etc. All the extra flushing and wearing gloves (they don't have to be latex), is in case there happens to be drug that got on your hand that you then spread around the bathroom, or if any drug doesn't get flushed initially. Double flushing usually was recommended for 48 hours post standard chemotherapeutic infusions, and was also recommended if home toilets weren't considered to clearly empty after a single flush.
As we don't know how these drugs may affect septic system bacteria long term, the septic system advice is prudent.
I personally just made sure the toilet lid was closed before I single flushed. We are fortunate enough to where each of us has our "own" bathroom, so family isn't often in that bathroom. And anyway, I always close lids. I am concerned about fecal germs getting into the air. I took ibrutinib capsules, and checked inside the bottle looking for residue before removing them, plus washed hands after taking. I did not bother with putting them in a medicine cup, because if any had broken I know how to do a hazardous chemical cleanup. I don't think you need to purchase special medicine cups, you can use any small glass or cup to pour into from the bottle if you prefer.
On pre-FDA-authorization Zanubrutinib as part of a clinical trial for six months now (with other medications).
All I can report is that I was told none of that and don't follow most of that. I have not had any issues. The capsule surface has not had residue in my bottles and I have yet to see a broken capsule.
SofiaDeo's advice is good anyway. Closing the lid is important for general cleanliness; if you have a strong stomach, go read up on particle distribution in bathrooms. It's an eye-opener.
They said wash hands if you've touched the meds. Probably means you could touch things and cause issues with other in your home. They also said to flush twice.
I really hate that they continue to give cytotoxic chemotherapy handouts to targeted chemotherapy patients. Even M.D. Anderson does this, and they ought to know better! To me, it's departmental laziness, and unnecessary fear mongering in the interest of making patients feel special. It serves only to simplify their handout process. I think they've been doing this since before the pandemic, so I don't think it's due to recent staffing shortages. It's nursing or pharmacist shortages in general, perhaps. I consider that pharmacists only have a certain amount of space to save handouts, but I also see that some pharmacies print out sheets customized for each drug.
I rely on the FDA-mandated package instructions that we seldom see - though I do get an abbreviated handout that looks like it was edited from the package insert. They probably don't want to overwhelm us with all this info when we're already stressed. But it was mandated for a reason, and we can trust our hemo/onco to answer our questions, but I find they often don't volunteer info, either.
Here's the package insert for Brukinsa/Zanubrutinib. For those of you on other drugs, you can Google (or DuckDuckGo) on the drug name and the words FDA package insert. Note that despite its advice to see the Full Prescribing Information, when I find a link labeled that, it's still the Highlights of Prescribing Information. That might vary from drug to drug. What I count on is that the Highlights list the most vital info.
Sorry for coming late to this - been on Zanubrutinib for four years now - none of this was ever mentioned. As others have said, these instructions seem much more related to "chemotherapy".
Some common chemo drugs used for CLL. Cyclophosphamide the C in FC-R, Bendamustine the B in BR, Chlorambucil if unfit for FC-R or BR then this is used with O. They all have something in common.
Yes, I've had two treatments with cyclophosphamide, once in 2012 and again in 2021. It can cause sarcomatoid carcinoma which I got in 2021, just before my 2nd treatment. Also got vincristin and rituximab. In 2021, right after having the tumor removed from my bladder, I got encephalitis caused by the CLL. Both are extremely rare. The bladder cancer is in remission and I'm still recovering from encephalitis. They started me on zanabrutinib with WBC only at 14K. But they started it because of the encephalitis I got. They (and me) do not want a reoccurrence of that!
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Zanubrutinib My doc wants to start me on this when my numbers are good 
Anticipating starting venetoclax 
Start of my journey on FCR.
About to Start Treatment 
Would like to be boring but just starting out!
