psychological effects

[Tootsietoo]

my brother has been taking imbruvica for many years, and I have noticed negative psychological effects. Irritability factors, temper, issues, Etc

These could be simply age related as he is moving into his seventh decade. Any thoughts?

[lankisterguy Volunteer]

Hi Tootsietoo,

I'm 76, with a fairly comfortable lifestyle, many volunteer jobs I enjoy. However my wife has commented that she thinks my continuous treatment with BTK inhibitors has contributed to my impatience, irritability, etc. I have always been a bit of a curmudgeon, and never did suffer fools or time wasters graciously, so of course, I don't think I have changed, so it may or not be the drugs or just aging.

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and 8 posts mentioning irritability: healthunlocked.com/cllsuppo...

45 for anger: healthunlocked.com/cllsuppo...

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Len

[Newdawn Administrator]

I posted on this subject 5 yrs ago and feel sure there is a correlation between the two. I know from a reliable account I heard that a haematologist had commented on his observation of this phenomenon too. So maybe not just a symptom of advancing years! 😉

Newdawn

[LeoPa]

I wrote a post on oxalates a few days ago. You might want to read it. My thoughts are there 😁

[CLLCalifornia-USA]

My experience after several years on Ibrutinib has always been positive. It has given me my life back. I’m able to do the things I enjoy again. My four kids are amazed at the energy and positivity because before Ibrutinib I wasn’t up for much because I was too unwell. For some people it could be aging as well as BTK drugs. I’m 72 and just returned from a trip to Big Sur and was able to keep up with everyone. I feel blessed. Sally 🙏

[Aerobobcat]

Hi Tootsietoo,

Yes, I too suffer similarly. I have always had a bit of short fuse but since my diagnosis of CLL and treatment for this and other autoimmune illnesses I’m now struggling with impatience.

It maybe partly because of not being able to carry out the things I used to do and the frustration this causes me is at times not easy to cope with.

I’ve always believed that the illnesses and treatment’s do play a part, however my wife is not convinced.

But having read some of the replies to your post I’m now convinced that my lack of patience is part and parcel of my condition.

Best of luck

Aerobobcat

[mrsjsmith]

And I thought I had just become a grumpy old woman ? Now I have an excuse 🤔

Colette

[CycleWonder]

No one has commented on me being short tempered or irritable. But I talk with a therapist every other week to discuss anything I’m having difficulty with. It helps me figure out different ways I could respond. With five adult kids, a husband and my health issues, there’s never a shortage of items to discuss.

One particular aspect that helps me is to recognize what I have control over and what I don’t. It makes it easier to let some things go because they’re not my problems. I may have feelings about what others are doing but the recognition that it’s someone else’s problem reduces my burden.

Even so, having a diagnosis, even if we’re doing well at the moment, means a fair amount of time and energy is devoted to monitoring the CLL, checking for secondary cancers, and evaluating whether it’s safe to participate in activities others do without pause. This is an underlying cause of some stress.

Lastly, I am sorry you are dealing with this as well as your husband.

[larrymarion]

Tootsietoo, thanks so much for posting about this. I, too, am guilty of impatience and other negative behaviors. While my wife would say they preceded my 5.5 years on ibrutinib, maybe they became more severe during and after my BTK doses?

One idea you may try, and others have noted, is chatting with a social worker connected to a blood cancer center. Social workers who are affiliated with a major CLL center of excellence may have experience with this particular side effect. And that, in turn, may comfort you in addition to providing someone to discuss the issue and how to mitigate it.