BRUKINSA UPDATE

[wizzard166]

This post is to update our online family about my progress since starting Brukinsa. My history is in my profile, but I will be six years diagnosed in March 2024.

On January 1, 2024 I took my first dose of Brukinsa, which is two 80 mg capsules twice a day. No side effects to date; in fact, I already feel stronger and better. My Specialist suggested bloodwork one week before starting the first dose, to set a baseline for the Complete count of all cells red and white, and HGB, and Platelet levels. Then the plan was for a one week bloodwork and exam and a two week bloodwork and exam.

My baseline bloodwork showed WBC 135,000. My one week after first dose saw the WBC drop to 77,000. This was with my local Specialist in Florida. My wife and I just traveled to Boston to see my lead Oncologist at Dana Farber on Tuesday January 16. My WBC has dropped to 16,500, and my Spleen was no longer palpable. My spleen had grown as large as 20.5 cm as of last September, and although we didn't do another CT Scan on this visit she could tell that it has shrunk dramatically. The Lymph Nodes also are clearly reduced dramatically too. My severe night sweats, which were totally drenching every night before treatment, also had totally stopped. My Oncologist in Boston felt we can now wait to see each other again in six Months in July.

Wow. A new lease on life.

Carl

[Richard_TX]

That is such good news Carl. I've been on Brukinsa for 8 months now and I'm having similar results.

[wizzard166 in reply to Richard_TX]

Thank you Richard. Your earlier communications with me were an inspiration, since you had such great results too with Brukinsa, so I was very optimistic when I started my first dose. For me now its only 19 days as of today, but I have to be really happy with a new optimism to have perhaps a normal lifespan ahead of me

Carl

[scarolinagirl]

That is great news !!!

[wizzard166 in reply to scarolinagirl]

Hey Carolina

Thank you for the reply.

Carl

[Zia2]

Congratulations!

[wizzard166 in reply to Zia2]

Hey Zia

Read your bio and sorry to hear of the difficulties you have had with treatment. Almost makes me feel guilty for not having had any side effects. Might want to ask your Oncologist about Brukinsa, which I'm taking, and as I mentioned with no side effects. Who knows; maybe, that will work for you with none.

Carl

[CLLCalifornia-USA]

I’m sure you’re excited to have your life back. Congratulations. When I started Ibrutinib, I saw immediate results. Enjoy each and every day. Sally

[wizzard166 in reply to CLLCalifornia-USA]

Hey California

I notice you and I both have Trisomy 12 and are Unmutated. Glad to hear your treatment with Imbruvica was also quite successful.

Carl

[Ghounds]

I'm so very pleased it's working so well for you and it sounds as if your quality of life is much improved. The absence of side effects is also good to hear. Long may it continue!

[wizzard166]

Hey Ghounds

Thank you for your reply. Yes my quality of life is already improved in only 19 days, and I'm very optimistic I'll continue to do well.

Carl

[bonbeat]

Great news and no side effects!! I'm rooting for you!

[Silvafoxe]

Wizzard

Such a good news update. I’m on Brukinsa for almost three months now. Lymph nodes reduced dramatically in the first month. WBC dropped from 55k to 7.5k. Other numbers have improved. No longer anemic. Doctor says the med is working and I told him it’s a blessing. Praying it continues working for many years. I notice I am sleeping more than prior to the med or the diagnosis. Seems I am urinating more but read that to be a side effect. Of course I am drinking more water and liquids than before. Hate getting up twice at night but good thing is I go right back to sleep. Praying for all of us to continue with good results.

[wizzard166 in reply to Silvafoxe]

Hey Silvafoxe

Thank you for the encouragement, and glad to hear that after three months you are still going good on Zanubrutinib. It is truly amazing at how low so quickly my White count went. My HGB and platelets were still low on the two week testing, but hopefully the HGB will go back up over time. My guess is the Platelets stay low, because I know we can bleed more easily while on Brukinsa. I'm not sure however if that is because the Platelets don't rebound or some other negative affect Brukinsa has on bleeding.

I too am sleeping better, no more night sweats, and also strangely urinating more. I asked my Specialist if the Brukinsa treatment would increase the urination, and she seemed to think not. Anyway I'm really happy.

Carl

[Silvafoxe in reply to wizzard166]

Wizzard

I read frequent urination is a side effect. Strangely the medical professions appear not to read the booklets. Glad you’re happy and praying this Ned will sustain us for many years since it seems to have fewer side effects than done if the other btki inhibitors. Take care

[Stamphappy]

I'm so happy for you, Carl! Your story is certainly a ray of hope. Keep up the good fight! God bless you.

[wizzard166 in reply to Stamphappy]

Thank you Stamphappy. I'm much more optimistic now, after only twenty days on treatment, that I might live as long as I hope to do.

Carl

[MaxSmart]

I’m on Brukinsa for a couple years. no side effects, much better than Ibrutinib

[Nana1961]

congratulations! How long did you have to do weekly Blood tests? I’m trying to decide on the Zanubrutinib or the Venetaclax/ Gazyva for limited time treatment . I’m torn!!!