Zanubrutinib journey

[jorum]

I lurk on this site and gather information from time to time ... thought it was time to contribute!

I started Zanubrutinib/BGB3111 in Jul 2016. Good response with lymphocytes down from 103 to less than 4 after 13 months.

My primary CLL symptom prior to treatment with Zanubrutinib was low platelets. Platelets increased from teens to max at 178 after 2.5 years.

I stopped Zanubrutinb in March 2022 due to platelets less than 30 ... I no longer qualified for the trial under which my Zanubrutinb was supplied. CLL was measurable but very low at this time ... 0.4 % of lymphocytes with CLL.

Steroids and Mycophenolate ineffective at managing platelets. Platelets are now managed with Eltrombopag with a count in the 60's.

CLL is slowly returning. Lymphocytes now 11.

Current plan is to see how long Eltrombopag lasts and then look around for options ... not sure what?

I am hoping to qualify for Venetoclax once CLL becomes a problem.

I experienced no side effects from Zanubrutinib and would recommend.

I have maintained a relatively active life and manage the low platelets by going a little slower down hills on my mountain bike and keeping a bandage in my pocket !

[catnapcrew]

Thanks for sharing. Yes you’ve had a good run. I guess time for next leg of the journey. We certainly hope you qualify for venetoclax. What r the criteria off trial? As you know G’s had great results with venetoclax- v&i actually. We will be in touch pm meanwhile keep on riding that bike and bandages handy. As always - great positive attitude.

[WarriorPrincess4]

Hi Jorum, thanks for sharing! Your post is a real eye-opener for me.I too am in BGB trial and taking Zanubrutinib. I am in my fifth and last year of the trial. This drug has done wonders for me with little to no side effects. I was shocked to read that at a certain point in your treatment you weren't qualified to continue with the trial! 😳 I didn't know that this is a possibility! I was always told that even after the trial BGB wil continue to supply me with the drugs, free of charge. Now I'm starting to have my doubts. I will certainly ask my specialist on our next visit.

My platelets have also been low from the start, 60. They now fluctuate between 80 and 105.

Jorum, I hope that your CLL hangs low for a very long time! May your platelets multiply!

Keep us posted.

Ellen 🌷

[jorum in reply to WarriorPrincess4]

Hi Ellen, Thanks for the good wishes! I hope your platelets stay greater than 80 for a long time to come!

[CycleWonder]

Congratulations on keeping on, keeping on. You may have inspired me to get out there today. It may be windy but it will be close to 60 with no rain. My main issue is skin rashes after riding a paltry 7 miles! Not sure I have found a solution yet. Still trying various remedies.

[DanBro1]

I like your attitude!! 👍😀

[CoachVera55]

Yes thank you for this Zanubrutinib Journey reveal. I have been on this pony for just 1yr & it keeps throwing me. I find it super effective but for me it seems cardiotoxic. I had chestpain the first 3 months with 3 ER visits. I contribute all of that to an under/untreated respiratory infection. Them doctors would not prescribe antibiotics for me. Once I got the full 10 day dose of antibiotics I began to improve. However by then 80mg daily is all I could tolerate for the next 3 months. When we went to 80mg twice daily, pleurisy popped up again but with early antibiotics I was good. To date only 2 infections the whole year.

I put on 40lbs however with the steroids they liberally ordered & exercise restrictions of 8 months. Once back to exercising my old injury, Right Hip Arthritis progressed to some bone on bone & a new Right Foot Collapsed Arch PTTD came through also. Ortho does not want to operate & neither do I so I wrap my hip with any strenous exercise & I get my customized boot today. Even my back is good with a back brace. I even invested in a cute rolling walker since the injuries are bilateral I am not stable & I must at least walk.

However 1 month ago this horrendous 10/10 Left Lower Lateral Rib Pain came & shut me down. I had to reduce back to 80mg daily of Zanubritinib. The CT Scan shows signs of Congestive Heart Failure with Thorax Edema & Right Lower & Mid Lung Aetelectasis. I had stopped using my Symbicort & did not realize the respiratory component with all the bone/joint pain management. Anywho back on the Symbicort, Lasix 40mg for a week, Echo Scheduled & feeling better. Labs are holding so far; Hgb & Plts are holding, WBC up 8->12 & Neutrophils have doubled. Not bad so far but 2 large Neck Lymph Nodes have popped up on this Daily Dose of 2 weeks so far. I heard some go back & forward & even have drug holidays before having to find another treatment. You did 6yrs & that is what I want at least if not more but my track record is shaky. Continued success with your journey🙌🏾