Hi Dave,

I have been on IB for a year now and i have fatigue as well. Some days are worse than others. I dont know what can be done about it. I think its something we will just have to live with. Stay positive and hopefully the fatigue will get better.

Best Regards,

BC

First, you might get more replies if you lock your post.

So sorry you are experiencing debilitating fatigue. Any busy parent with young children and a stressful sales job (at least my friends in that field feel a lot of pressure) would feel tired. Having CLL can only increase the problem.

Others have talked about severe fatigue on Ibrutinib. I can't speak to this side effect, even as a 79 year old after 27 months on this medication. Yet, we know that each of us experiences this disease and medication responses differently. Perhaps it's in our DNA, in our heritage, and we're predisposed to react one way or another. Sometimes I wonder if it might have something to do with nutrition and diet. Have you considered evaluating your diet, working with a nutritionist, going vegetarian, avoiding gluten? While this might seem overwhelming or time consuming, you never know if it would help unless you try it.

I wish you well.

Have you had your B12 and D levels checked? I had an interesting discussion with my doctor at my last visit, as I was suddenly just hitting the wall around 4 or 5 in the evening. He agreed with me that those helped by a nap are not experiencing true CLLFatigue. Chris, CLL Canada, has often described it as being more like the feeling of a low grade flu.

When my tests came back my B12 had bottomed out, even though I was taking supplements. I will be interested to see where it is next time. I hope just upping the pills works - much easier than needing injections. I do feel better.

I've been taking ibrutinib 420 mg daily for a year (I'm a 69 year old man with CLL). After about 5 months fatigue was brutal on a daily basis. I felt like I was going to collapse if I did not nap. Slowly, over the last 4 months this has been getting better. One thing that I've done that works for me is to increase my early morning exercise. When I started several months ago it was a challenge to walk for 5 minutes on a treadmill. I devised a gradual strenghthening program, increasing my treadmill workouts daily (now 30 minutes), and alternating them with strength training using a Bowflex machine. This has worked for me. I still feel fatigue but nowhere near as much and I feel stronger. I hope your fatigue recedes. Let us know how it goes. All the best to you, Jim

Hi Dave,

Dx at 39 (now 46) with 20 & 16 yo daughters at home and working on adopting an 11 mo old, so yeah, right there with ya buddy! Bendamustine rituxan spring 2012, ibrutinib aug 2016, so it’s been 26 month now on Ibr. Month 5 was the worst by far for fatigue! Finding time to exercise was a must for me and helped me get through the fatigue. It’s virtually nonexistent now (70.3 Ironman in Oct & half marathon next week)! Everyone’s different, with different degrees of CLL, but exercise helped me stay at the full dose the entire time! Other than petechia for three days, the only on-going side effects I have are just nucances, really...mouth sores (daily vacyclovir keeps them mostly in check) random cramping in my hands and feet that comes and goes, but lasts only 30 sec or so. Hang in there! You’ve got this!! - Jollie (North Carolina)

Would Your doctor consider switching you to Acalabrutinib? I was treatment niave and started with acalabrutinib at my specialist's recommendation because I couldn't deal with the fatigue (and low platelets). Within a week the fatigue was gone! Going on 4 months now and its not returned. It worked for me not sure if it's the same for everyone.

Hi Dave. Oh, I feel for you. I've been on Imbruvica since April with a start and stop due to a bad rash, then beginning again at 280 mg for about a month, then on to 420 mg again. The first part of starting this stuff was awful. I could have slept 18 hours a day. When I first got up I'd feel good, then the fatigue would creep in and I was feeling awful. I had been a gym nut, but couldn't force myself to go. Now, six months in I'm feeling better (I zone out at about 6pm), but other than that I'm back at the gym, and doing yoga and tai chi. I don't always want to go, but I know it's good for me. I think MsLockYourPosts has good advice for you. Have your B-12 and D levels checked and ask your oncologist (I hope you have a specialist) what other tests can be done. We all know fatigue is part of this disease and Imbruvica, but not all doctors go along with that which I find really annoying. I can only say, stay busy and it sounds like you have no problem with that with a job and two little kids. I'm hoping with some testing and if you can get some treadmill and strength exercises in, it will help. I so wish you the best. I know this hasn't been a lot of help, but know there are many people like you with this problem. I hope you get more replies. Take care and know that everyone cares. Carole ps Keep us updated.

Dear Mellyjake,

I am sorry to report that I have tried everything to combat IBR fatigue, which I've had for almost 3 years and nothing has helped. I too exercise and only feel energized for a very short while after. I've learned that it's best to exercise in the morning and also try to schedule most things early in the day as I am Cinderella looking for her carriage by early afternoon before I turn into a passed out pumpkin.

I have taken an anti-fatigue class and ended up badly injured for pushing my already challenging workouts too much, and frustrated that no one would listen that I really am fatigued and really did previously workout. I hear that MD Anderson and other institutes prescribe something for the fatigue. Where I go will not do this. They feel it is dangerous as those drugs can be addictive. My oncology team seems to not care about fatigue as a side effect. So my quality of life suffers as well as my earning's capability. I wish I had better news for a fellow exhausted CLLer. BUT we are alive. That is something to be thankful for.

Please let us know if you learn anything.

I am not on Ibrutinib so can not relate to that, but like a lot of people nearing treatment I have tried a few things which might help my fatigue . I am retired, however have a dozen houses that I maintain. I would start feeling tired in afternoons and many times would take short nap which helped, but I was not getting enough done. I noted from my last blood tests that I was below range in calcium and protein. I started by making sure I eat 65+ grams of protein a day for my weight. I also eat 4000 mg of Tums a day to raise my calcium levels. The increased protein and walking 2-3 miles a day has almost stopped my afternoon naps and increases the bodies call to make more red blood cells which are primarily protein. Of course I do this with my doctors approval, I don't need any more problems, CLL is bad enough. Stay positive!

B-12 and a good magnesium ie. Re-mag .

Had a year of fatigue, the b12 and mag

Restored my energy very quickly

When I initially went to MD Anderson methyphenadte was prescribed in small dose for CLL related fatigue. Helped slump particularly in afternoon. This treatment was said to be especially effective in women. Some physicians maybe reluctant to prescribe it