Brukinsa side effects

[Jill70]

My husband (50) has been on Brukinsa for 6 months. Initially did really well on it. Recently the last few weeks he seems to be going backwards. Extreme fatigue, bloody noses, and night sweats which he hasn’t had in 6/7 years. Any insight to what might be going on? He goes back to his CLL specialist the end of June but I’m nervous and pushing for him to call sooner.

[CoachVera55]

I started with Zanubrutinib full dose in April & had chestpain in 13 days. I switched to Acalabrutinib for 10.5weeks 1/2 dose (100mg daily) & did good after the horrible headaches but I was left to walk around with an untreated pneumonia for them first 3 months (May-July). I had night sweats & body aches. I went outside my Physicians of 2 Pulmonologist & 2 Oncologist to get a 10 day dose of antibiotics (Aug 3,2023). I then began to heal

I was only on 1/4 dose of Zanubrutinib, 80mg daily for the next 3 months (July-Oct) while my heart & lungs healed. I got a CLL Specialist & a new Pulmonologist & Cardiologist in August to re-evaluate me & give a 2nd Opinion. They felt I was ready after their tests, so we increased the dose to 80mg twice daily Oct, 2023. My numbers were near normal, all lymph adenopathy shrunk & everything was great.

By March 2024, I was in so much pain with Body Aches, Old Injuries & just losing my mind. My CLL Specialist suggested a Medication Break but that sounded preposterous to me. The CLL was under control & I contributed the pain to my 40lb weight gain.

Anywho by late April I had this new Left Lateral Rib Pain that was unbearable. I felt like a knife stabbing with the weapon left inside. Everything was so difficult, eating, preparing food, sleeping, bathing even breathing. The Xray showed ‘Thoraic Spondylosis unchanged’ but there was a significant change indeed.

I pushed for a CT Scan & got my CLL Specialist to see me that same week. She read the CT Scan as normal & from a Oncology point of view I guess it was. That bad boy showed my Lungs Collapsing, Fluid buildup around my chest & something with Diaphragm Slicing. Those were all signs of Congestive Heart Failure from my ICU days. That thing was still coming for my heart & lungs just at a slower rate that I did not even see it coming🤦🏽‍♀️

All I can say is get things checked out that doesn’t make sense to you. A normal side effect okay, just verify that its still working. This is not a ‘normal’ side effect but it is a listed side effect. Anywho I knew I wasn’t crazy with everyone praising the drug & I am feeling like poop 💩 something was wrong with this picture.

Zanubrutinib is an amazing drug, very effective just make sure that you can tolerate it & utilize them reduction protocols as needed. I was on half dose for 7 months & could not tolerate it😫 So presently on a medication break & my future is unknown 🙌🏾 I weaned down to once daily & got blood work now down to zero & scheduled blood work every 3 weeks for 3 months. I don’t know but I inow I need to be monitored closely while we gear up for Round 2 with O&V 😞 Sure wish I could of stayed here longer…

My weight gain in 13 months - many red flags 🚩 but I missed most of them

[Seaway789 in reply to CoachVera55]

Oh my goodness I hope and pray they fixed what is going on with you safely and quickly 🙏🙏🙏

[Spark_Plug]

I would not wait, but I would be on the phone first.

[craterlake]

i was on calquence and was doing pretty good for 7 months but platelets and hg were steadily dropping .. my wife said to quit taking the calquence ..I called the cancer clinic but my ONC. was on vacation so no help there ... I had an appointment in a few weeks so like a good boy I kept taking the calquence .. by the time I had my appointment calquence/acalabrutinib had caused serious cytopenia .. like hg... 6.4 - platelets 19 no immune system functioning etc.. .. I had to take dexamethasone - then blood transfusion - next day started gazyva .. next week another blood transfusion and so on --- I am on O&V now ..it will be 2 years ago this sept. that I started gazyva and i thank God that I am doing very well ... but when I was taking the calquence med it was one of those times that I wish I had listened to my wife .we have been together for 58 years this year .....if I were him I would get a blood test on Monday ...blessings , james

[CoachVera55 in reply to craterlake]

Wow, I had those slow changes too & I did not notice it. The CLL Specialist suggested an abrupt stoppage & I thought that was a crazy suggestion. When that 10/10 body pain went 100/10 to my Left Lateral Lower Rib I weaned off them bad boys especially after the CT Scan confirmed every symptom I wanted to ignore 🤦🏽‍♀️

[craterlake in reply to CoachVera55]