CLL Support Association
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Symptoms related to CLL

Hello all,

As I'm still quite new on this forum, I don't know if these questions have been asked before, probably yes, but I am going to ask them regardless and like to read from you what your experiences are.

What I would like to know is what other people feel every day as a result of having CLL. I just feel tired, some days worse then others. My hands and lower arms feel tired and my hands sometimes have a tinkling feeling.

Now when all of a sudden a lot of nodes swelled up last week, I have a sore throat and it feels like my ears have an infection. I also feel a bit of lingering pain in my groin, of and on.

I look forward to read from others on here if they had the same experiences or others.

Thank you all in advance for your replies.

Jan.

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Hi Jan, welcome to the family you never wanted to join! You’ll find fatigue is a major feature for many folks on here. But some people find it gets better as the illness goes on for them if they are in a long watch and wait period. Some even speak about the diagnosis switching them into a renewed determination to lose excess weight (something I want to do, though I’m sure it’s smart to not allow oneself to get —-too—- thin so you have some reserve for if this unwelcome house guest we all have lying around lazily decided to wake up and start demolishing the place around us.

For me, I was diagnosed in the middle of an episode of pneumonia which was hard to treat and led to me feeling much iller than the signs on chest X-ray would suggest. The raised lymphocytes led to investigations that led to a final diagnosis.

That was all back in May.

I also had a horrible throat infection of thrush because of the antibiotics that finally got the illness under control. During that infection my lymph nodes in my neck swelled up and became much more painful. The subsequent PETCT also led them to look more closely at some suspicious areas on bowel, which turned out to be polyps.

Nodes that are expanding suddenly could indicate an infection or they could indicate the illness getting more severe. You should definitely get it checked out!

My problem has been that I’ve so far never been able to get back fully to life. Waking for more than 5 mins is difficult Partly due to some breathlessness but mostly due to pain and weakness. I had weeks of being bed ridden and then more latterly feeling unable to walk far. And perhaps it has become a self sustaining vicious circle. Ie the less I feel able to walk the less I can walk so the less I feel able to...

Then, something very strange has happened recently. My tonsils which have been expanding slowly for months (and it turns out were causing my throat pain) suddenly met in the midline and caused me to feel like I was choking.

It was agony. It was terrifying.

So almost a week ago I had a tonsillectomy done as an emergency during another week of hospital admission (which no doubt didn’t help my muscle weakness...).

Right now I don’t know whether what happened to my tonsils is anything to do with My CLL. It could be tangentially related (eg chronic tonsillitis caused in part by poor ability to fight infection) or it could be more directly related. I have heard of both scenarios: one case where this kind of presentation did lead to early treatment and one where someone had to have their tonsils out in the first year but is still untreated 20 years on!

I think the hardest thing with CLL is dealing with these periods of uncertainly. Let’s face it we will have one of these after every blood test, every scan, and certainly any biopsy. That phase of not knowing when or if the disease is going to become more aggressive is never going to end. Well not unless the disease becomes more aggressive and chemo becomes part of our life.

I’m told people get better at handling uncertainty. I haven’t yet. Well maybe I’m a bit better than I was. But we each learn how to cope in our own way. For some, myself included, psychology support can be helpful. And I would certainly recommend it to anyone.

So I don’t know if hearing my story is any help to you. But if you are worried about nodes in your neck, do get them checked out. And don’t assume that your fatigue is all due to CLL. I’m told that my tonsils will have been causing me problems during my sleep for months and maybe years. So it could well be that this operation will improve a lot of my general symptoms. We shall see, of course, and I’m glad also to be going to see a physio later today to help with my rehab program, and see if I can’t regain better mobility now I can sleep better. Sleep is so important for health and I’m happy to be sleeping the best I have for years despite the post op pain and recovery I’m still in the middle of.

Good luck with your journey.

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For myself, what you are experiencing is exactly the way I felt, plus a few pains around underarm area. Just make sure you rule out other causes before blaming any lingering issues on the CLL. And don't wait too long to go to the doctor if you start feeling really sick. It is definitely a "waiting" game.

BeckyL. USA

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fatigue, infections, moodiness, lethargy, intolerance to heat, overheating

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... sorry, "that may be due" I meant to say!

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Hi Jan - there seems to be a wide variety of experiences and if you’re just diagnosed then you won’t know where you’re going to fall on the spectrum yet. That’s a really difficult place to be.

Personally I’m one of the lucky ones. I was diagnosed 8 years ago, with evidence of having had CLL for another 18 months before that (but quite possibly for many years).

I’ve only recently got joined this forum, which I guess didn’t exist when I was diagnosed - and that’s the time I’d really have welcomed it. I imagine that there are lots more people with CLL out there who are (like me) basically well. At the CLL conference recently the keynote speaker said one third of those diagnosed never need treatment for CLL. That may be because they’re old and die of something else, but add to that the many undiagnosed, and there’s must be loads of us living ‘normal’ lives

I guess I’m just saying that this forum will naturally attract those who are just diagnosed and those who may be approaching or undergoing treatment. But for some there are many reasonably well years in between.

Personally I go to my consultant once a year for check ups, and plot all my blood results on a graph so I feel more in control. I’ve cut down on my work, moved away from the city with its close proximity and (I guess) increased risk of infections. I have flu jabs annually and my GPs err on the side of caution whenever I see them. I live a full and cautiously normal life, and hardly anyone knows (or needs to know) that I have CLL. It’s not currently something I think about daily: I have good hygiene habits, routines etc established and now just get on with life.

Hopefully you’ll turn out to be one of us invisible ones too!

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