Exhaustion from CLL

[Brigidoon]

Tired from CLL. DIAGNOSED 26 months ago. So far my problem has been only tiredness. No other symptom. Is there a treatment for tiredness or must I live with it.

[AussieNeil Administrator]

Seems we are all too exhausted to answer your post! It's not surprising, because there are nearly 1,100 posts on fatigue to our community! Hopefully some will have useful tips while you are waiting for more replies.

healthunlocked.com/cllsuppo...

In summary, CLL isn't the only reason for exhaustion, but when all other causes are ruled out, it's pretty certain that CLL is the cause. In fact, it's one of the reasons specified in the iWCLL guidelines to start treatment if it significantly interferes with your quality of life.

I presume you have seen your GP/PCP about your exhaustion? If they can't find a cause, it's worth having your vitamin D serum level checked, because it's a common occurrence to have low serum levels with CLL. Getting that back into the normal range with your doctor's monitoring might help. Perversely, exercise can sometimes help - IF you are able to drag yourself off your bed.

Neil

[Packers46 in reply to AussieNeil]

Thanks for the link. I think you're right about people to exhausted to post on here...lol. I think it's one of the worse side effects and being anemic doesn't help at all either. Thanks again!

[AussieNeil Administrator in reply to Packers46]

You need to have the cause of your anaemia confirmed as solely due to your CLL. Have you had a ferritin/folate/B12 test? You might be able to improve your anaemia if you aren't absorbing enough of these nutrients for red blood cell production. It's impossible to feel energetic if your body cells are being starved for oxygen!

[Packers46 in reply to AussieNeil]

They just did some blood work to check that kind of stuff to make sure it is just the CLL. Just waiting to hear back. Thanks for the advice. Really appreciate your taking time to write me!

[Wildcatter]

Iron levels could also be a cause. It’s also possible you could be anemic which can cause fatigue as well. I hope this helps. Good luck

Wildcatter

Texas, USA

[Packers46 in reply to Wildcatter]

Thank you. I am anemic per my last blood work a couple weeks ago and didn't out that together. Thank you so get much!

[Hidden]

If you have not done so already, get your thyroid checked out.

[Packers46 in reply to Hidden]

Thanks I need to do that.

[Packers46]

If anyone has a treatment for the absolute exhaustion I would love to hear about it. It's horrible being so tired all the time and still not able to sleep through the night. Naps are a must for me anyway but they don't help a lot but seem to help some as long as I keep it to 30 minutes to an hour max. Longer than that and I'm just worse than I was before the nap. If you find anything out that helps with the exhaustion please post and let me know. I would greatly appreciate it!

[AdrianUK in reply to Packers46]

Sometimes treating the CLL itself makes a huge difference to The fatigue so that is worth discussing with an expert. There are no guarantees.

Some people find increasing their exercise levels actually improves fatigue tho that sounds counter intuitive.

Pacing yourself also helps.

And doing what you can to improve sleep hygiene may help.

Also it’s important to get screened for causes for fatigue other than CLL as treating anything you find may help also.

[Packers46]

I'm having a horrible time with the Imbruvica (Ibrutinib). The side effects are rough. The mouth and skin ulcers are horrible but the fatigue and leg pain is definitely the worse. I was beginning to think it was just her having issues with it, but I've seen several people having issues with it. Not sure what is the best course of treatment as they are already talking about chemo and radiation. Not sure how I feel about that.

[sllincolorado in reply to Packers46]

Looks like you are in US - maybe suggest to doc that he prescribe acalabrutinib (calquence) which for many people has fewer side effects. I have a 2 minor mouth sores but they are not painful or sensitive. My debilitating joint pain went away. Not to question your doc's judgement but unless you are pretty young and mutated my understanding is chemo is no longer suggested.

[Packers46 in reply to sllincolorado]

I'm 46 so young for CLL and do have mutations. They are already discussing whether chemo and radiation may be another option soon for me. I'm wanting to wait and give this more time though because chemo scares me but from the people I've talked to at the oncologist say that I seem to be having the same type side affects they are with less nausea which I do have some but the nausea meds tend to help a lot.

[AdrianUK in reply to Packers46]

Ok the word “oncologist” here is concerning to me. It’s really important before making a treatment decision to get to a CLL specialist and not a general oncologist.

Radiotherapy is very rarely used for CLL, and certainly in the USA non Chemotherapy options are available for everyone to consider.

Chemo may be suitable for some still, however. And so it is important to talk to a real expert who has up to date knowledge about all the options available to you to consider. And also who will help you determine whether you can delay treatment since non specialists sometimes want to treat to soon.

If you can’t get a true CLL specialist on your insurance the CLL society offer a free online consultation for USA patients.

Options for treatment in the USA at the moment include the following (some of these are not yet available first line in other countries)

FCR Chemo: May cause people with CLL to go into very long Deep remissions and even cure some of them. However it’s Chemo and has a number of short term and long term side effects that has made doctors and patients keen to explore alternatives. We have more long term data for this tham anything below.

Ibrutinib: currently very popular in the USA especially as it puts the breaks onto CLL very effectively and even puts it into reverse. Like all drugs however it has some side effects (notably heart related) and almost never gets patients to the point that their CLL is undetectable so you tend to end up taking it for years.

Acalabrutinib: Newly licensed in the USA for CLL this is similar to ibrutinib but believed to be more specific and have fewer side effects.

Venetoclax plus obinituzimab this is another newly licensed comination treatment for CLL in the USA which is believed to be better tolerated than chemo and the data suggests it puts even more people into a deep remission than FCR (i.e getting people to the point you are unable to detect CLL). It is expected that these Deep remissions are likely to also be very long in many patients and may even be a cure for some people.

In addition to all this there are clinical trials going on to try and figure out what the best treatment or combination is. One that is popular at the moment combines acalabrutinib venetoclax and obinituzimab to see if that is better than FCR or acalabrutinib and venetoclax alone.

I’ve tried for just give you a small snippet about it the various options. Much more can be said about the pros and cons of each. And that’s why it’s so important to see a CLL specialist who can discuss all this with you in your own specific situation and help you understand both whether you actually need treatment yet at all and which option is best for you as an individual (some of which will be about your own individual thoughts about treatment goals).

[Packers46]

I'm in that boat if not being able to do anything. I'm on disability anyway from a work injury so at least I don't have to worry about working, but I would like to have some form of life. I'm so tired all the time and naps just don't help. The diarrhea is about there only side affect I have had. Don't have the curly hair. I've been bald dinner I was 30. Lol. Glad you're starting to do well, at least a little anyway. It does seem show though. They sure don't give you all there information. They acted like this was some miracle drug but the side affects have been tough. Guess I shouldn't complain though. There are a lot of people in here much worse off than I am. But let's face it, any kind of cancer sucks!

[Packers46]

Thank you so much for all the info. You are a wealth of knowledge with this stuff. I have to admit I was surprised how many symptoms that I'm having. It very hard and some days are way worse than others. Thank you so much for you concerns as you have you're own issues to deal with. it means a lot you're taking time to talk to me!

[Gman2]

Yes there is treatment for being tired. It is called rest and do your best to take care of yourself. Many of us do not take care of ourselves to the extent we need to. We are also psychologically stressed out whether we are aware of it or not. Best wishes for the holidays and try to enjoy yourself.

[JigFettler Volunteer]

Hi Hidden . Wise words.

You are right about my cycling. Mountain biking along trails and paths through wilderness, with nature wrapped around you, devoid of mechanical sounds, not a house or tarmac road in sight... yes I even stop, and take a moment to absorb the natural wonder that surrounds me. It's a mindfulness thing for me.

We do get dealt different cards. And choices how to play them. It's good hear yr progress. Ib is seemingly good to you. Carefully switching off the B cells with BTK inhibition like some sharp shooter. FCR was good for me, but more like B52 bomber.

I have invested heavily in "exertion therapy". Resistance training, movement and stretching. It has worked for me. Not everyone's cup of tea tho.

I've also bonded with my elderly cats.

Planted flowers and taken up new hobbies.

How is Kookunut?

Best wishes!

Jig

[AdrianUK]

Scott I think my experience with fatigue is similar to yours in that I HAVE definitely seen an improvement it’s just not enough of one to satisfy this impatient person! I got pretty extreme literally not able to walk safely to a toilet in my own home or Hosptal at the worst. Now I manage to shop once a week (in a small store...), cook for the family (using my perching stool) and even do very short walks in the forest sometimes. But I still struggle to focus and mental physical or emotional exertion is like torture. I feel like I’m

Wading through treacle. My legs get sore and heavy. My brain feels foggy. I have almost no motivation and if I get even a minor cold all bets are off as I take to my bed and sleep for multiple multiple hours.

So I’m on a journey and bizarrely for me whilst it’s true my fatigue was tracking up and up as my counts went up and up, the B52 bomber approach Jig described decimated my CLL cells which are now undetectable but my energy levels have been much slower to recover. I’m sure it’s related to the immune system tho and I have major issues with recurrent infections and hard to control allergies.

So in my mind my body is very slowly repairing the damage and devestation CLL has caused and this was also compounded by a lot of muscle

Loss. My job now is to try and build that back up and increase my strength and stamina. It’s not easy tho especially when just getting out of bed feels Like An achievement still. I sometimes explain it as feeing how you do when you have the flu. It’s the closest thing I can relate it to in my pre CLL life tho I don’t think flu felt this debilitating.

And then recently a close family member started trying to tell me that pregnancy tiredness was probably worse than this! The lack of understanding and compassion for us is staggering sometimes.

[mrsjsmith]

Or me !

Scott just be grateful you don’t have 🐈 🐈 chasing around at night 😕

Colette

[DebKat999]

That's right Scott, and a promise is a promise....🙂

[mrsjsmith in reply to DebKat999]

Too right Debs. 🙂

[duffymcgrif]

Have your thyroid checked. It happened to me. I was so tired, just walking across the room made me exhausted. Found out my thyroid med needed to be increased. Within a week after that, I was back to my ol' self. Check it out. Might just be that. Good luck and hang in there.