Hi, from New Zealand. I have been CLL diagnosed for 2years +--No treatment but am not handling the Chronic fatigue at all well . ANY suggestions please !!!. I feel my reason for living is disappearing because of being unable to do as I wish /need each day. Have learnt a lot from this site __thank you ..
Barbk NZ
Thanks Scottxxoo, I think i will have todo as you suggest--In the meantime have ben told to slow down and rest. Not so good when nornally I am a fit and active person , BARB
Scott good to know the ibrutinib is working. Did your doctor say how long he thinks it might work for?
Scott AUSTRALIA !!!! --I really think you should ask for Diplomatic immunity if you ever visit NZ !! 3 1/2 hous flight away and lots of friendly banter between the 2 countries but we are not joined at the hip ... Barb NZ
Scott !! even from across the pond I know the biggest way to upset a Kiwi is to ask what part of Australia they are from ? And I failed Geography ‘O’ level.
Colette 🤔
Please you know where NZ is . While over seas and not speaking the language some times I found if I said ALL BLACKS and pretended to kick a football folk would soon realise where I came from .. Barb NZ
London seems to be a great place for Australian and New Zeanders to visit and work for a time. My current Physiotherapist is a Kiwi and she said it is much easier to work in the U.K. than some places. Then it’s a great base for visiting other parts of Europe all within easy reach.
C x
Hi barbkay. I'm on a clinical trial for Zanubrutinib at North Shore Hospital in Auckland. I had very bad fatigue for years until the drug cleared my blood. Where do you live in NZ?
Sorry this reply has taken so long in coming ,but, I must have missed your MSG ..I live in Akaroa --nearly 100 windy Kms from CHCH NZ . thanks for replying .Do you know many other with CLL up north. I prsonally know of noone here .
No, I don't know anyone else. I am in contact with a medical specialist in Tauranga who is pushing for Ibrutinib to be funded by Pharmac but he's the only one. But my GP says in a big, busy practice there might only be a couple of patients with CLL so maybe that's not surprising.
I'm one of 55-odd people on my clinical trial in Auckland.
By the time I started treatment in 2015 on my first clinical trial, I couldn't walk much more than 200 metres and could barely get through a day at work. And like you, I was used to a lot of exercise.
It's tough but, years later, thanks to Zanubrutinib, I'm walking 6-8 kms a day.
BTW I lived in ChCh for a year in 1973 and went out to Akaroa once!
Hi -- Have read there are 120 new cases of CLL diagnosed in NZ annually, but as we dont die from it in a hurry, there must be more people with it wandering around ,. We live in a small town and have a young part time Dr --Some times I wonder just how much he knows about the complaint . I find these sites are excellent to pik up facts but would like someone around to talk personally to. Barb
Do you go to see a CLL specialist in ChCh? My GP knows far less about CLL than I do (which is no fault of his given it is reasonably uncommon).
No ,not yet seeing a specialist --Am about to ask to go just to learn some more , I feel the same about my Dr as you, I feel --I tell him some of the facts ! Have just found out though that the lack of motivation I suffer is not due to my old age( 74 & and counting )and Laziness i was beginning to think I had , but due to the Chronic inflamation from CLL which affects the brains Dopamine ,
Have today joined a Leukemia Support group who has a few CLL patients -will perhaps visit here if feel too down? BARB
Yes I’d go to a CLL specialist and get some info. I assume you have seen one already since your diagnosis? GPS aren’t qualified to tell you what’s going on
I wish i had the same attitude as you Scott. Sometimes I don't feel like i'm gonna live very long.
While I was on W&W for 2 years and even now after just completing FCR I go to the fitness center. I found a good workout getting your heart rate up really helps with the fatigue symptoms. Cutting out the carbs helps also. Carbs make you body work harder which can lead to fatigue especially with CLL. Don't short change yourself on sleep. Instead of watching that sporting event or movie later into the night choose to sleep earlier.
Thanks for that --However I do keep regular early bed time hours ( not a TV watcher --have a hubby who hogs the remote )--then can't wake in the morning still!!-so it isnt lack of sleep. Will look at the carb thing ...
I like your sentiments !!.
Have your heard about functional medicine treatmant?
I could recommend specialists from FMA, they are proffesional in this are.
Hi Scott, love that post. Having a terrible time with this fatigue....such an understatement. I always appreciate your honesty. Like some other posters here, I do sometimes feel depressed and of course very pissed off at these Dr's...I am now looking for another Dr. since the one I have been seeing since Sept of 2018 is as you have described. What an ass, could care less about whatever side effects or anything else that hits me.
I have tried to see a CLL specialist but there is not one in my state and insurance will not allow an out of network Doc...Going to see a Dr. here where I live who had pushed FCR - At the time I said no thanks and moved on to the Dr. that gave me Ibrutinib.
The blood numbers have gotten better, but as you say its s - l - o - w.....Sleeping ALOT, it does actually seem to help though. It is as you said, I feel like I have the flu and just HAVE TO SLEEP...don't really have a choice. Sometimes it feels like my whole body is just shutting down...scary shit
I know if I told my current Doc, he'd ignore that too. I'm hoping it gets better....thanks for the post.
Lorna
I have been feeling these same symptoms now for the last 20yrs and I'm 73. These symptoms started slowly and just continually got worse over time. Had a stroke in 2002, which didn't help, making it worse. Now I take one day at a time.
That's funny Scott - you got everyone riled up!! Maybe get one of those globes that spin......just saying
Lorna
Hi Scott, thanks for asking. I stopped taking. Ibrutinib about 3 weeks ago and I am getting ready to start venetoclax and obintuzamab. My numbers are pretty good. My doctor gave me the choice of O and V or FCR.... so I will start infusions on November 25th. Hoping for the best of course but and pretty nervous about the whole thing too but overall I am just grateful to have a choice to try the newer drugs for CLL.
How about you? Still dealing with lots of fatigue? I couldn't take the side effects of the ibrutinib they just kept getting worse instead of better. So I'll see what's next!
Lorna
Lol my mom always loved that movie! Way too many intense side effects for me. Too long to list just felt terrible so I'm taking a break before starting the other regimen of treatment. There's just no way I could have stayed on it for the coming months let alone indefinitely it just made me feel awful all the time. I guess it works for some people I am glad to hear it is working for you 
I'll update you when I start see other two and take it one day at a time. Remission would be lovely. Take care Lorna
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