What symptoms of CLL do I really have to worry about?!

[accordio]

Pretty new to CLL, on Watch and Wait. I am struggling to work out exactly what symptoms I have to really worry about! Was blown away to get the diagnosis (before first lockdown when information/help was minimal). I am also curious what initial symptoms most CLL sufferers initially present with, when they have that first revealing blood test! This would be a really interesting point for research I reckon!

[nanasu]

Info I was given re what to watch for is probably out of date now as it was 9years ago. Mainly.....low grade fever, fatigue, night sweats. But we`ll all be different. It`s easy to say don`t worry but hard not too. Everyone is here for you so any questions there will be someone who can help.

My initial symptoms were painless swollen lymph glands in my neck. Suspected it wasn`t a virus as I didn`t feel ill. Off to the docs and one lot of blood tests later.....here I am today.

Take care.

[accordio in reply to nanasu]

Thank you for responding - I sort of get the answer and I know I will get through. Just had hoped for a healthy old age...... and I guess I might get that..... but I am more aware of "odd" things happening. Very pleased to be part of this support group!

[lankisterguy Volunteer]

Hi accordio,

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The simple answer is that you will likely NOT have any symptoms for a long time.

That is what makes Watch & Wait so difficult, waiting for the "shoe to drop."

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Please make certain to read this "Pinned Post": healthunlocked.com/cllsuppo...

The entire way through.

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Len

[Hidden]

Accordio,

If you are on W&W you probably won’t see many CLL symptoms soon, but many of us came to CLL with symptoms of CLL side effects. A Mayo Clinic study done a few years ago found as many as twenty-five percent of their newly diagnosed CLL patients also had hypogammaglobulinemia which involves reduced immunoglobulin levels, and this is associated with an increased frequency and severity of infections, secondary skin cancers, and autoimmune complications. I am not trying to scare you, all these CLL side effects are manageable, but you need to recognize and deal with them.

Good luck,

Owen

[GMa27]

I was on W&W 10 years before I had any symptoms. Everyone is different. Try to put it aside and just live your life. My hematologist said to just enjoy. I saw her every 4 months. I would get a tiny nervous the nite before. Eventually that feeling went away.

Report any nodes that might pop up, anything that doesn't feel right ( bone pain, swelling, night sweats etc) Your hematologist will tell you what to look for by his/her questions during check ups. 💕

[accordio in reply to GMa27]

Thank you, I am beginning to put it aside and as I learn more, I am content to "Watch & Wait....

[Uplawmoorlass]

Hi accordio. I was referred by my GP last December and given an appointment with the haematology consultant in early March which was rescheduled for late March and then subsequently cancelled. A month ago my GP requested i have another blood test and that resulted in an appointment with a haematologist 10 days later. Consultant said it was mostly likely CLL and I am now awaiting the results of a blood test to identify markers. At first I was ok but when I didn’t hear anything last week and then subsequently told it will be next week now I feel quite emotional. For months now I have had a lack of energy at times and often feel cross with myself for letting things slip! It’s helping having found this group to find out more about CLL and share worries and information. All through the pandemic I have been very careful but I have looked after my school age grandchildren and they stay overnight. Now I’m not sure whether I should be! Take care and stay safe.

[accordio in reply to Uplawmoorlass]

It seems you like me have been adversely affected by lockdown! This group helps a great deal as common sense and others experiences are useful! I sort of feel we need heightened awareness now - fatigue is tiring! Literally! Take care - thanks for your reply

[Dkozi]

My one and only symptom that also resulted in a CLL diagnoses was episodes of dyspnea that would last for a week or so. Climbing stairs or walking my heart rate jumped to 140+bpm. Six months later I started ibrutinib with excellent outcome.

[accordio in reply to Dkozi]

Thx Dkozi - breathlessness is the symptom that has surprised me. Not into measuring anything yet, but I find this website so useful and generally reassuring, most of all, because I feel part of a group

[YelvertonDevon]

I had a blood test for something totally unrelated - no symptoms. Interestingly on this site a while ago I asked how long people had been on W&W and I think someone had been 30 years.

[accordio in reply to YelvertonDevon]

Reassuring - thank you

[AussieNeil Partner Administrator]

You might find this community poll interesting: healthunlocked.com/cllsuppo....

[YelvertonDevon in reply to AussieNeil]

Very interesting Neil.