Been told tiredness isn’t a symptom of cll - CLL Support

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Been told tiredness isn’t a symptom of cll

Noelr71
Noelr71

Hi I just joined this wonderful Website, I have cll I’m on watch and wait nearly 2 years now my question is I got diagnosed because I was and still am tried all the time and recurring shingles plus bone pain and swollen lymph nodes, but my oncologist says that apart from my lymph node and shingles the rest are not symptoms of cll but every where I look people with cll experiences tiredness, it makes me doubt him but he is a blood specialist and may be Over reacting but it bugs me plus now I have sciatica for the last 3 months non stop pain still in work but it’s getting harder every day to care, can anyone who is on here help me ease my doubt.

36 Replies
oldestnewest

Hi Noelr71

Is your specialist a Cll expert, look him up and if he is not, ask for a second opinion. If you say where you are in the world perhaps someone will recommend an expert.

On a slightly different subject, have you had a blood test for PSA ? My partner was told he had sciatica for over a year. It wasn’t. No harm in having the test if you haven’t already.

Oh yes fatigue is a CLL symptom, most experts now acknowledge this even if they don’t know exactly why.

God luck, hope you get the help you need.

Bubnjay1

Noelr71
Noelr71
in reply to Bubnojay

Thanks I’m in Ireland and I’ve had a lot of blood test I’ll ask if I had that one, I have a bad memory that’s not a symptom of cll but I tell my wife it is lol 😂

Sometimes climbing stairs is like walking through treacle. I fall asleep at weird times because of tiredness - fatigue is a symptom for me.

Run not walk to a different doctor.

Anyone who is a true specialist in CLL will know that not only is fatigue a possible symptom in CLL it is incredibly common, can sometimes get very severe, and is even listed as one of the reasons to consider treatment!

So as I would say I would look for a true cll specialist doctor and get my care transferred there in your shoes. If you let us know where you are the group can point you to your closest cll specialist.

Noelr71
Noelr71
in reply to AdrianUK

Thanks for the reply I’m in Ireland

AdrianUK
AdrianUK
in reply to Noelr71

The only CLL specialist listed on the cll society website in the Republic of Ireland is as follows Patrick Thornton, MD, Beaumont Hospital, Dublin Phone: (01) 809 2150

Noelr71
Noelr71
in reply to AdrianUK

Thank you

stunned
stunned
in reply to Noelr71

The Flair Trial is running in Belfast, so hopefully the doctor running the trial, although not necessarily a CLL specialist, might just be far better than the doctor you have been seeing.

Anne

Nothing infuriates me more than people doubting CLL fatigue. It most definitely IS a symptom. Prior to my diagnosis and until treatment, I had narcolepsy-like fatigue that was unmanageable. The good news is that immediately upon starting treatment (ibrutinib & obinutuzumab), that kind of fatigue stopped. I now have a very different general fatigue that is very manageable. Find yourself a CLL specialist immediately. Mine had a very different and more thorough diagnosis than my hematological-oncologist generalist.

Cllcanada
CllcanadaTop Poster CURE Hero

Its not fatigue, but a misplaced 'sick' response.. like a flu without the bug...

Its caused by a chemical messenger imbalance, so its more 'sick,' than tired...

We interpret it as fatigue.. but it isn't. Its absolutely a part of CLL for some patients.. but not all.

~chris 🇨🇦

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Cllcanada
CllcanadaTop Poster CURE Hero
in reply to Hidden

Show your doc this video... MDA CLL specialist Dr. Thompson

patientpower.info/video/im-...

Then look for another doctor... 🥴

I was fortunate to have Dr. Keating's input and support, as well as Dr. Hamblin in 2002, so this has been VERY WELL established as a CLL related symptoms for almost 20 years!

Obviously not all fatigue/sickness is CLL related, so its a long process of eliminating other known causes... took me almost 2 years to find out it wasn't something else.

~chris 🇨🇦

What a complete pillock. You deserve better. All the best.

Sorry you have a haematologist who is not up to date on the symptoms and affects of CLL, I agree a second opinion is probably needed, sooner rather than later.

As soon as i mentioned the fatigue, my doctor said it was a reason to start treatment given my WBC and ALC. I go to work Mon to Fri but as soon as i sit down after my dinner, it's like someone has drained me of all energy and i am just unable to do anything. Fatigue, is debilitating and affects quality of life, another reason to start treatment according to my doctor.

My Haematologist is NOT a CLL specialist, but he is leading the Flair Trial at my local hospital. He is very knowledgeable about CLL and to be honest i see no reason to seek out a CLL specialist . Some Haematologists at my hospital are not as clued up on CLL and i have had some conflicting check ups with them, however i am now only seen by the one leading the Flair Trial. Not all of us can easily get to a CLL specialist, depending on where they are compared to where we live.

I sincerely hope you find either a very good Haematologist or a CLL specialist, if there is one near to where you live, and you get the care you so deserve.

Anne

Noelr71
Noelr71
in reply to stunned

Thank you for your reply. Yeah fatigue is killing me I drive a bus for an hour in the morning and 2 hours in the afternoon and in between that I sleep and I get home at 5 go to bed around 6 till 8 then go to bed around 11 sleep all night and every time I wake up it’s like I never slept I got a sleep apnea machine made no difference

AdrianUK
AdrianUK
in reply to stunned

Anne, by definition the doctor you are seeing who heads up the FLAIR trial has a special interest in CLL and has satisfied the leaders of the FLAIR trial that he is a fit person to run it.

Therefore whilst he may not be a published expert, I would consider him at least to some degree a CLL specialist from what you say.

Additionally and really importantly as part of the FLAIR trial each patient has to be discussed by the doctor with the central team re reasons for treatment and so the willingness to be scrutinised like that and work as part of a team bodes really well.

If he has that sort of relationship with people like Peter Hillmen you can reasonably assume that he is also the sort of doctor who even outside of a trial will be willing to discuss difficult cases and refer on if necessary.

Clearly if there was ever a point where a difficult decision didn’t seem that clear cut you might want to ask for a second opinion. He sounds like the sort of doctor who might even suggest that before you asked.

It is important to remember that in the clinical data which supports CLL specialist care actually leading to an extension in life expectancy of their patients, this benefit applied even to relatively junior doctors who were being closely supervised by a CLL specialist.

I personally would never want to be seen by a generalist haematologist for CLL, but if geography required it I would be happy to be a patient of someone who was at least interested in cll enough to have been part of the flair team.

In fact considering that something like 100 centres across the UK have signed up, including I believe ALL the published clinical CLL experts, I would have serious doubts about being treated by any centre that wasn’t part of Flair. And those doubts would extend even if I wasn’t eligible to be a patient in Flair.

For interested readers here is a map of the FLAIR sites so you can check if your hospital is one: google.com/maps/d/viewer?mi...

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J_88
J_88
in reply to Hidden

hopefully it gets better Scott.

Noelr71
Noelr71
in reply to Hidden

You sound like me that’s how I feel I’m just existing don’t see my kids I’m always in bed and my wife tell them to be quite it makes me feel so guilty because my youngest child has had no quality time with me but hopefully you will start getting more Energy from your tablets. Thank you

Newdawn
NewdawnAdministrator

Maybe your ‘specialist’ needs to get himself along to some high level peer conferences and listen to what the true specialists know and understand about fatigue (or as Chris more accurately describes it, the ‘sick’ response) resulting in debilitating fatigue.

It’s even part of the treatment criteria in terms of a significant constitutional symptom.

I feel for you having to listen to such uninformed nonsense.

Newdawn

In the last 8 months I went from a type A personality always on the go, really never sitting still, to feeling sluggish (and maybe more "normal" activity level), to now where I have to force myself out of bed, exercise, then collapse again and go to bed early. I feel like a completely different person. I can’t believe people can hold a job going through this! Kudos to them! They are tougher than I am!

I agree with the others – fatigue is absolutely a symptom and if your doc doesn’t know that, find another in a hurry!

Definitely need a new doctor! 💕

I was having to take an afternoon nap long before treatment was considered necessary. In my case it was my platelet count which triggered the need for treatment. In this day and age how any physician (even if not a specialist) does not understand how debilitating CLL can be (even before the need for treatment) is not paying any attention to the current research. I also had problems with my memory, (missed appointments etc.)

I am so sorry that you had to listen to such nonsense because all it does is try to lay a guilt trip on you.

I am so impressed that you are still able to work.

Noelr71
Noelr71
in reply to Kjag

Thanks kjag I to have been going to my doctor for 5 years about being tired all the time and been giving the old you need more exercise speech even though I wasn’t over weight then I need antidepressants because I was depressed finally one day a young stand in doctor seen me took my blood and I was diagnosed so I’m used to this kind of thing now but thanks for your comment, hopefully you are okay

Noelr71,

What follows is a list of suggestions put forward by people on this site to deal with fatigue.

Good luck and good health,

Owen

Fatigue list

Tests to determine if problems in these areas may contribute to fatigue.

•thyroid

•ferritin

•Iron

•IgG subclasses

•B12

•folate

•VitD3

•adrenal glands - saliva cortisol test

•testostrone

•sleep apnea

Supplements some people take to deal with fatigue

•B 12,

•Caffeine.

•D3,

•ECGC,

•Iron

•Turmeric

•Polyphenols

•Adaptogenic herbs

•IVIG

Exercise

•daily brisk walks

•jog a bit

•lift weights

•exercise but don’t overdo (sounds like my mother-in-law)

•lose weight

•Saunas

•Yoga

Life Changes

•lessen stress

•deal with sleep apnea

•"eating clean"

•Get second opinion, perhaps switch doctors

•Naps

PaulaS
PaulaSVolunteer
in reply to SlowCLL

That's a very helpful list, SlowCLL Thanks for sharing.

I'd add blood tests for haemoglobin, liver function and kidney function (for indicating reasons for fatigue). but those are usually done on every CLL checkup so are unlikely to be missed. Maybe one day there will be tests for cytokines - but I think they are very diverse and complicated.

I'm glad you included "naps" as well as exercise, amongst the ways of dealing with fatigue. Both can work for me, though not always.

Paula (who is always looking for ways to combat fatigue)

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AdrianUK
AdrianUK
in reply to Hidden

And indeed why some people get it worse than others. And some people get better on treatment and others don’t. Also it’s not true that gentle exercise never helps it Scott. Even tho you and I fall in the group that exercise hasn’t been able to delay the decline, others report it helps them. And I’m sure that the only way to climb out of the hole we are sinking into even when treatment works is to then do gentle exercises to build up strength and stamina slowly. Too much too soon and you end up hugely set back. But without doing something the muscles which have now wasted though lack of use will stay wasted. It isn’t going to be easy. And I don’t know how far I can get to. But I’m already better than November when I was in hospital for a month due to generalised weakness and one crazy doctor even mentioned that I may need to be sent to a nursing home!!! I’d still be lying in my bed not even getting to the camode safely if it wasn’t for gentle exercises slowly building up my muscles.

Why would your doctor say fatigue is not from the CLL when extreme fatigue is one of the reasons to start treatment? I would seriously consider a different doctor.BeckyL USA

My CLL specialist says that fatigue is not part of the illness. I disagree!!

AdrianUK
AdrianUK
in reply to Bsv39

Sorry but he isn’t a real CLL specialist then. The criteria for treatment include fatigue for goodness sake. Fire him. Get yourself to someone who actually knows about CLL.

Like you, I am positive the fatigue is CLL related. Also like you wondering how to help the situation .. best of luck !!

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