I started Brukinsa on 6/29/26. I have been diagnosed with Waldenstrom’s. After one month, my abnormal tests came as extremely abnormal yet, but in one month, they were one third better than they were when I was first diagnosed. A couple of side effects have been noticed like fatigue, bleeding, and nausea, but all are being self-controlled with rest, carefulness when around anything, and prescription meds for the nausea. I wish you the best. My recommendation is Brukinsa (so far) is an excellent medication for Waldenstrom’s.

My response is about Brukinsa which I have been on for a year and a half. It has been a good experience for me. It may have been responsible for high blood pressure which I never had before but that was taken care of with medication. I live a normal life and am very active. I’m on a half tablet twice a day but dislike splitting the tablets in two because some tend to crumble. When I started taking them in March of 2024 there were pills at half dosage that didn’t need splitting. The company made a huge mistake changing it.

Overall, it is a really good treatment option. I’m 85 years old and can say that since I was diagnosed with CLL in 2019 I’ve been able to live a normal life. I’ve had no negative reactions to Brukinsa.

@A MyLymphomaTeam Member
Scottie-
Yes the research has been done. Always something new to learn about it. I believe Isabel can take the medication and do the same treatments as I did. She is going to be on a medication that is taken orally, it’s a new generation BTK inhibitor. Targeted therapy. It works by blocking the signals the “c”cells send to divide and multiply. The medication I was taking is a standard conventional therapy that destroys the dna of the “c”cells. It is given intravenously. I saw improvements in my own symptom's after the first treatment. My understanding is they are both good and effective known to have high success rates. 🤞 Brukinsa/ or Rituxmin- Bendimustine.
Stay strong 💪
Much love 💕
Your friend and supporter 🤗
Always-
Michelle 💝

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A MyLymph...

All my friends on this thread I have been on Brukinsa since Oct.2023 and it seems to be doing the trick for my MCL. Fortunately my only real issue has been major fatigue
Best of luck everyone on your journey

Hi Isabel started taking started Taking brukinsa on 7/ 8 /26. Things started out great , drenching night sweats Stopped Headaches at night Stopped appetite improvement more energy So I was very very Happy! But after.1 month started with some side effects Sores on lips and inside of mouth . But the big one was difficulty swallowing. it wasn't 911 call .The food got stuck in the front of the throat .I didn't have problems breathing. when the food got stuck water cleared in out. So.i called my oncologist office and they said to stop the brukinsa and to come in the next morning. After the exam my i8 Ioncologist he put me on prednisone for 5 days and.told me to go back to The brukinsa on Monday, tomorrow. After stopping brukinsa systems came back the sweats at night the Headaches, lost of appetite, low energy, my mouth sores are gone mouth throat is 100% better. So I can't wait to start brukinsa again. So I love the brukinsa and the prednisone took care of my Swallowing, and mouth rise and lip balm for my mouth. So I think since I had a bump in the road they controlled it .So my experience with is brukinsa is Good!!! Most people have some side effects! If you have questions let me know. Thank Ed