brukinsa/zanubrutinib

[neddyseagoon]

Has anyone suffered from ongoing over production of head and chest mucous,I seem to have a constant issue coughing up gunge,my cll seems to be under good control with very few other side effects,thanks Rob

[opal11uk]

Yes, my husband! Had all the tests and X-Rays and now down to see a specialist, when I don't know, but this has been going on now for a good couple of years, constant coughing up muck and nose runs like a time, it makes him miserable.. He is on prescribed antihistamines, CLL under control and no other symptoms. If you have any ideas please let me know!!!

[neddyseagoon in reply to opal11uk]

I have been on many antibiotics but the issue keeps returning!! not sure what the answer is.I will keep pushing for chest xray.I am speaking to my consultant soon and will try and find out if this is normal.

[WeetabixCherries]

Hello Neddyseagoon (love the name) 👍yes I have constant nasal/sinus issues but no cough. I have been taking zanubrutinib for 10 months. I use a sinus rinse regularly and this does help, I bought mine from Amazon but you can buy from most chemists... I hope this helps, good luck 🤞🤞

[CoachVera55]

I got 2 infections while on Zanubrutinib. The first was 13 days on full dose. It was Pleurisy & since untreated, 2 days later developed into Left Pleural Effusion, Pneumonia vs Aetelectasis. Then treated with only steroids it continued to evolve & after 3 months it was Walking Pneumonia. I later acquired antibiotics after 2 Pulmonologists & 2 Oncologists refused to prescribe them. I improved, got to my CLL Specialist & with her Cardiologist & Pulmonologist I got much better.

However from that first 13 days (May 6th) I could only tolerate 1 - 80mg dose daily (1/4 the normal dose). By October end, the new Pulmonologist & Cardiologist cleared me to increase the dosage & we went to 1 - 80mg dose q 12hrs now. I got an upper respiratory infection that Saturday & by Monday & had Chest Pain. This time the team got me antibiotics quickly & I did good. Every doctor marveled at my lab numbers. I stayed on that dose until April but I had such bad rib pain & bone pain in general was intolerable. I weaned down in April after the CT Scan showed signs of early Congestive Heart Failure. By May 30th I stopped altogether because while celebrating my Dad’s 90th Birthday early I had chestpain the whole time. I only lasted 13 months on treatment. The number 13 was a constant theme, 13 yrs 8 months of ‘Wait & Watch’, 13 days on treatment before my 1st ER Visit for Chestpain (there were 3 ER Visits in 3 months) & of course 13 months of treatment tolerated in all.

I never got sick for an entire year after that 2nd infection; the 1st infection when I started treatment & the 2nd infection when we increased the dosage. I still take an allergy pill because I went into stage IV with a pan-sinusitis attack that lasted 6 weeks & required 2 different antibiotics from a great ENT doctor.

I’m 8 months off & my labs are still great. I also suffered Esophagitis & Acute Gastritis, Barrett’s Syndrome that must be watched. I had a Endoscopy & Colonoscopy Dec 2023 when it was diagnosed. The Colon was clean thank GOD. Anywho I had a 2nd Endoscopy done 12/17/24 which showed no more gastritis & 0 dysplasia for the Esophagus.

However I insisted for the Endoscopy team to wear mask & they were reluctant to until I pointed out a coughing nurse on duty with no mask. The procedure went on without an issue & the nurse had on a mask when I woke up in the Recovery Area.

But the Endoscopy area was already contaminated & I wish I just walked out but I needed to know if I had stomach cancer on top of everything else. By 12/20/24 I had Upper Respiratory Symptoms, I used Natural Home Remedies hoping it would work but by 12/25/24 I had Right Lower Lobe Chestpain. It felt like a Rock was in the area no matter what I did. I started my 13 month old antibiotics & within 10min the pain lessened, so I knew it was early pneumonia. I contacted my Primary & she would only order a 5 day dose. My SIUH Northwell Oncology Team, didn’t return my call 12/26/24 & when I called again on 12/27/24, there answer was to go to the ER. I definitely was not going to the ER or Urgent Care Center to be further exposed. I called my CLL Specialist reluctantly since she is in NJ but she ordered another 10 days & a CT Scan.

I got better but the antibiotics did a number on my stomach & it took me a month to recover. I file complaints at the Endoscopy Suite & on my Local Oncology Team. My primary actually order more antibiotics when I was able to message her. So I am set for another infection free year lol 😂

This mess ruined my Christmas, New Years & 59th Birthday but I am grateful to know how really amazing my CLL Specialist is, My Primary Doctor when I can actually reach her & how I will not waste time on the local oncology team at SIUH Northwell in the future. I am there simply for bloodwork & the amazing Pharmacist!

Best of luck & I pray you get to the bottom of your symptoms so you can live your best life!!! GOD Speed 🙏🏾

CT Scan done 12/30/24

[IRN83]

interesting. I have that issue as well. I never thought it was a side effect of Brukinsa.

[Jungle-Jim]

Yup, I struggle with an abundance of mucous daily and there seems to be no relief in sight. At first, I imagined it was due to the high-pollen count here in South Carolina... and I think such is the case (to a point). However, the problem doesn't fluctuate with seasonal changes. I don't want to resort to daily antihistamines because that can lead to other issues. Like most of us, I struggle with low immunity - my IgG consistently hovers around 400 and I frequently have respiratory problems (which have so far been resolved with antibiotics). BOTTOM LINE: I consider Zanubritinib a "miracle drug," as blood tests (and general health) have vastly improved. So in my mind, the incidental mucous problems are of small consequence. Brukinsa has not restored my health... but in view of the seriousness of CLL, I'm blessed to have access to it.

[Phil4-13]

neddtseagoon, I'm 75 and started Brukinsa one month ago. My ENT doctor prescribed Bromph-Pseudoephed-DM cough syrup with antihistamine. It absolutely does the trick!😊Sandra

[turbomotive60]

Yes I've been on Zanubrutinib for 12 months now and get mucus at the back of my throat and nose and I have to keep clearing it most of the day its so uncomfortable at times mainly bed time but as others have said its the least of our problems we can live with it.

[neddyseagoon in reply to turbomotive60]

Thanks for all your comments,Iguess we all have to be happy that zanubrutinib does it,s job thanks Rob

[jimvan]

Yep, I have the same symptoms you described, neddyseagoon. I've been on Brukinsa for more than a year after 5 years of Ibrutinib. I had an appointment with an ENT (ear, nose, throat) specialist yesterday in fact. She offered me a surgery for a deviated septum, and turbinate surgery at the same time. I see my primary cancer doc tomorrow and will run this by him to get some feedback. I do the nasal rinse stuff probably 3 to 4 times a week like WeetabixCherries, and while it does help some, it isn't touching the underlying issues. Please keep reporting what you discover! Thanks for bringing this up (so to speak.) Jim

[neddyseagoon in reply to jimvan]

Jimvan,it is a right pain, you have my sympathy Rob