Brukinsa

[xv750]

Just started taking, First 3 days were very rough. Not so bad now. Anyone else taking it?

[CoachVera55]

Hello there xv750, I started with Brunkinsa which I enjoy calling Zanubrutinib. The newest cBTKI on the market & I jumped on it. Well you don’t know what to expect. My first few days were good but each day was a new symptom; 1st 5 days painful tingling in my hands, sores in my mouth & my bowel movements were irritating my anus. I got a large hematoma on day 5 & bloodwork showed a drop in my Hgb 10.8->10, WBC 81-118 & Plts 76->118 - all that was expected.

However with the burning feet & severe body aches I tried to exercise through it. On day 12 I did 45min on my TreadClimber & not bad. Day 13 I did 60min on an Upright Bike but developed chestpain. Went to ER after pain stayed for 3hrs. This started a bad trajectory - 3 ER visits for chest pain in 3 months.

My take away is rest those early days while your body gets adjusted to these strong meds. My doctor played them down but they are nothing to play with. Eat right, stay hydrated, walk & rest. Its truly an amazing drug but full dose was too strong for me. I am on half dose, my bloodwork is near normal & I have regained my strength💪🏾

Just be patient & gentle with yourself 🙏🏾

[Orangecat1]

yes. I have taken it since Nov 11, 2023. 2 days ago I had my lab report. My white count went from 56,000 to 10,000, my platelets went from 71 to 199. My A1C is 5.5, normal range. Was 6. I have not had any side effects. After 2.5 weeks my lymph nodes in my neck disappeared. My energy level is

great. I am thrilled with my results. I hope you feel better. And get the results I am experiencing. I am eating more fruits and veggies. I am eating only small amounts of chicken and have red meat in small amounts once a week or so. I wish you the best. Hope you will get good outcome too.

[Orangecat1 in reply to Orangecat1]

Sorry I am taking the med since Nov of 2023 not 2022. Littlest than 3 months and my labs are this good.

[StBon]

I am in year 11 of CLL. Have been taking Brukensa/Zanibrutinib since September 2021. I was advised to consume 64 ounces of water daily in gradual amounts. Failure to do that results in extreme muscle cramps, particularly in my thighs, so I pour an 8 ounce glass and a 54 ounce pitcher every morning and work on it for 24 hours. I occasionally have mouth sores. The only permanent ill effect I have had is very easy bruising especially on my forearms. This is mostly a cosmetic issue. The fatigue associated with CLL has been a permanent feature, so I work around it and lead an active life. I began with four 80 mg capsules a day and continued with that for approximately 1.5 years until all of my blood work was stable and close to the 'normal' range. At that point the dosage was reduced to 3 caps daily. That also helped a bit with the expense! I remain stable with great labs. Best wishes for an equally successful and long term relationship with Brukensa and the ability to mostly ignore your CLL.

[MSGMP]

March 2020 I was diagnosed with MS! In May of that year I received a diagnosis of CLL. It only took 35 years to catch up to me! I have been on Brukinsa for 16 months. Before that some of the meds did not work. My outcome looked rather bleak. My doc switched me over from Venetoclax to Brukinsa and my numbers started looking better. I have not had any bad reactions to the medication. Just keep hopeful things will work out.

[Ellieoak]

Yes I had used Brukinsa. The first couple of weeks i had the same problems but just lay low, drink lots of water and eat well and exercise as you are able.