u/Cmcs1992

I’m 34 with CLL and a NOTCH1 mutation. Because of NOTCH1’s association with increased Richter transformation risk, my CLL specialist has discussed starting Brukinsa (zanubrutinib) now rather than waiting until I meet traditional treatment criteria. His thought is that earlier treatment may help control the NOTCH1-positive clone/clonal evolution, but ultimately the decision is mine.
Has anyone else with NOTCH1 been given this option or chosen to treat early? I’d especially love to hear from anyone currently on Brukinsa—how you tolerate it, side effects, quality of life, etc.
My biggest hesitation is starting continuous treatment at 34 and potentially being on medication for many years. I’m trying to weigh that long-term exposure against the potential benefit of treating earlier, especially with the Richter concern.
I know everyone’s situation is different—just hoping to hear some real-life experiences from people who have faced a similar decision.

I’m 34 and was very recently diagnosed with CLL. I’m only about two weeks into the news, and I’m struggling with how much fear, anger and uncertainty it has brought into my life.

Everything happened quickly. The first week was especially difficult because I learned “you may have leukemia” through a MyChart message saying that more tests were needed, but that I would not be seen for another two months. There was no further explanation. I’ve since seen a CLL specialist, but emotionally, I’m still trying to process the diagnosis.

I feel anchored by it, as though it has attached itself to every part of my life while feeling 20 different emotions at once-grief, fear and anger being the heaviest. I’m trying to live normally, but my mind keeps returning to the diagnosis, test results, and all the possible futures I fear. Some people in my support system seem to think I shouldn’t be upset because “it could be worse.” and need to just be positive. I know they mean well, but it feels dismissive.

I can be grateful that my current situation is manageable and still feel scared, angry, sad, and overwhelmed.

Being diagnosed this young is a major part of what frightens me. When people say CLL can be lived with for many years, my mind responds, “But I need many years.” I want to get married and have children. I haven’t built the family I hope for, and suddenly I’m trying to calculate whether I’ll have enough time or whether someone will want to enter a relationship with someone who has a diagnosis.
For those diagnosed relatively young, especially anyone who has lived with CLL for 10 or 20+ years: Did the fear eventually quiet down? Did you stop thinking about CLL every day? Were you able to plan years ahead instead of thinking from blood test to blood test?