Quick background: dx in 2008 when I was 43 yo; FCR 2011 → MRD (minimal residual disease); lenolidamide 2011-14; zanibrutrinib 2014-2019; BCl2 inhibitor 2019-now; adenocarcinoma lung removed 2018.
Current tx is a trial BCl2 inhibitor (Beigene). I entered the trial at Phase 1 and was assigned to what is now apparently considered a fairly low dose. And yet ... to my (and my haematologist's) surprise, I'm now (as of two weeks ago) in complete remission ('CR') for the first time since diagnosis.
Great, right? Well, of course - it's wonderful. The thing is: I feel terrible. Much of this year I've been feeling probably as well as I've ever been, but I'm ending the year with significantly increased fatigue and a strong general blahness. I even had a mild night sweat last night. No other known health issues other than an ongoing mild-but-annoying sinusitis.
Of course, since I've had leukaemia for 14 years + immune-suppressing treatment + a secondary cancer I'm always mildly concerned about a new malignancy - but no firm evidence of that at the moment. (My GP has sent photos of a dark mark on a toenail off for second opinion though ...).
On the other hand, maybe how I'm feeling is the result of ... CLL + tx for 14 years + I'm getting older. But it feels more than that.
So my question is: has anyone else had the experience of being in CR but still symptomatic in some ways? Any other thoughts or experiences that might be relevant?
thanks
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Greyhound23
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Hi, I have no answers for you but I'm surprised to see that you could access Zanubrutinib as far back as 2014. I thought it was a newer drug. More experienced members will surely chime in with their advice. May you get better soon.
Greyhound23, I hope you feel overall better soon. Your body has traveled a "busy" journey of treatments. Maybe it just needs to adjust to this complete remission you now have. All the best to you. 🙂 Sandra
I can but speak for myself. I was in clinical remission (CR) for almost 4 years after B+R treatment. Whereas my breathing improved during CR and night sweats stopped, I was never back to normal even though I did not experience any hospital/illness during that time. As you said we are all getting older. Blessings.
Welcome to our community, Greyhound23. I think you must be one of the very early patients treated with zanubrutinib as my understanding is that it was first given to patients in Melbourne, Australia, late in August 2014.
You've experienced a wide range of therapies and it's great that you have achieved a CR after 14 years of treatment. It doesn't seem fair that you're feeling significant fatigue after feeling so well for most of the year. I'm yet to get a CR, so I can't offer a personal perspective on your question about the symptoms you're still experiencing. Perhaps someone else who has been in that situation can give you a better idea. However, I do have friends who have Covid at present whose only symptoms were the ones you describe. I guess you've eliminated that as a possible cause? It's certainly 'everywhere' in parts of Australia at present.
Hello - yes, I thought about COVID - but at no (recent) point have I had an acute illness. I'm aware some younger people don't necessarily become acutely unwell, and but I can't imagine that would be the case for older/immunocomrpmised
People here who have shared their COVID experience have reported symptoms from mild to extreme. I think, because of all of the emphasis on the dangers of COVID for the immunocompromised (which is well-founded), we think that we will necessarily have symptoms that we can easily identify as signs of an acute illness if we're infected. That's not necessarily the case, particularly for someone who is well vaccinated and who might have only taken on a relatively minor viral load. It's also possible that, at some stage, you've had COVID and your fatigue is a post-COVID symptom.
Is that Beigene trial the BGB-11417 trial? I'm headed in for final pre-trial exams tomorrow, as one of the treatment-naive cohort.
I'm obviously earlier in the journey than you are so don't have a lot to share. I did discuss outcomes with my oncologists about this kind of thing. As a relatively young CLL patient with remaining career horizon, getting to MRD and keeping things fixed-duration were decision factors for me.
What I was told was that even if I got to MRD, that I would remain highly immunocompromised for one to two years afterwards. This would suggest to me that, even if ALC counts move to effectively zero, it's likely some other cancer effects will take longer to stabilize. Since they don't really know the mechanisms around CLL fatigue precisely, perhaps it's another one of those things that will be slower to recover over time.
Glad to hear your results appear pretty positive, regardless.
Yes, I'm on BGB-11417! And yes, everything you say (or your oncologists say) makes perfect sense. It's not so much that I thought I would somehow feel wonderful going from MRD to CR; my frustration is I currently feel worse! But it's just that: frustration. (And still having plans/hopes for career is a significant trigger for that frustration)
After 14 years of illness and immune-suppressant treatment - whilst also just growing older - I accept my powers of recovery and recuperation are diminished.
I appreciate you posting. As a treatment naive participant, a Phase 1 trial is a little daunting, so it’s really helpful to hear from someone coming out the other side with good results. I am comfortable with my decision to participate … as I said, my circumstances favor aggressive action early even at some risk. But having the anecdotal positive data point is a nice encouragement.
Good luck with getting the fatigue sorted out. I had a lot of fatigue problems early on. B12 supplements, light exercise, and fanatical sleep management at least managed the symptoms. But everyone is of course different in response with CLL.
I had a lot of fatigue with CLL but within two hours of going on Ibrutinib I felt the tiredness lift. I was on it for six years before relapsing and it felt as if I 'd got my life back. After two years on Venetoclax I'm starting to get many infections including sinus problems.
Agree about Vitamin B12 and light exercise working in fighting exhaustion.
I am presently reading The Diet Myth by Tim Spector and starting to look at what I eat in terms of health. For instance sugar can give a post energy crash but replacing the craving with fruit helps build energy.
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Blessings.
Relapsed after 40 months in remission
Update 4 months after completing Venetoclax
Molecular remission after 6 rounds of FCR
Exercise, and being grateful for long lives
Additional drugs stopped. Is this other peoples experience. 
