CLL Fatigue

[GD-K]

I was diagnosed as a result of my suffering extreme tiredness. It too well over a year to get someone to investigate the possibilities of the tiredness just being down to age, I'm 68, and overwork. It wasn't until I suffered extreme weight loss that I had some further investigation and the final diagnosis. I have now been on Ibrutanib for nearly 2 years and everything is under control. However the fatigue is getting worse. Its unbearable. I do feel grateful that I have received help and feel generally OK but the tiredness is getting the better of me. I have also started to get the most awful depression first thing in the morning. It's like fireworks going of in my head with different thoughts flashing through my mind and I just can't control it. I've mentioned this to my consultant but they weren't sure if this was a side effect of the medication or not. They are insist ant I don't stop taking the me else had the same.

[lankisterguy Volunteer]

Hi GD-K,

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I understand your problem with fatigue well, it has been a problem for me many times.

You may be able to find some help in the box on this page labeled:

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In fact fatigue is one of our most common complaints, here is a list of 1445 past postings that mention fatigue. healthunlocked.com/cllsuppo...

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I would also suggest you see your GP about getting treatment for the depression, that can be very serious and should be investigated and treated if required.

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Len

[AnneHill]

Hi, I know how you feel. I have terrible fatigue. Its worse than it was before Ibrutinib. I also wake up in the morning with thoughts going round in my head.I have tried to look at my health and decide if anything else is causing issues.

I am diabetic and my sugar is high. Started another treatment today and I have antibiotics for cystitis. Thats probably the high sugar and low immunity.

Ibrutinib has lots of side effects and my dose has been lowered because of pain but I am a different person. I have little strength and energy. I dont know what the answer is. I have been taking Ibrutinib for 2 and a half years and my blood results are normal.

I darent stop it but there may be a time when I have been taking it for longer that I will consider stopping it. Many say exercise helps. My mobility isnt great but a walk does help.

All the best, Anne uk

[DriedSeaweed]

I wish I could suggest a solution. I haven't tried or read anything that helps. If you figure anything out please share. Take care.

[SeaChanty]

Hi If you haven’t been tested for sleep apnea, you might consider getting tested.

[Vlaminck]

Just a thought -- have they possibly tested to see if you have active epstein barr (EBV)? It causes incredible, often debilitating fatigue. It also is very bad presumably for CLL as it harasses our Bcells. My fatigue, shortly prior to diagnosis, was EBV. Then, a year later, after diagnosis, got another fatigue spell, got checked and had EBV reactivation again. Especially as we are immune-depressed, it probably reactivates more easily. Might be worth checking out.