Just joined the group so here we go with my question

My GP was monitoring my bloods over the last 12 months, he said I had Chronic Lymphoproliferative disorder, last month I was Ref to the haematologist at the hospital, they took my bloods and said I had CLL, they would see me in a few weeks once they have further results from my blood tests, I went on Tuesday this week, my white cells are 14.3 my Platelets 120 my lymphocytes 9.1, I also have enlarged lymph nodes in my neck, I suffer fatigue and day and night sweats, I have been put on w/w with 3 monthly blood tests, my consultant told me my fatigue and sweats are not linked to my CLL because I am at the very early stage, any advice please, cheers Andy

[jangreen]

Hi for me right from the start fatigue and sweats have been CLL. Are you seeing a local hospital or a specialist?

[Hidden in reply to jangreen]

Seeing a haematologist at the Hospital

[Cllcanada Top Poster CURE Hero]

Welcome...CLL night sweats are drenching and only occur at night. It is like someone poured a pail of water on you. Fatigue is a common complaint in CLL, mine was so bad I had to go on long term disability. I still had 14 years of watch and wait, so it is not a treatable indicator by itself. Many CLL patients report body temperature problems, but again, not treatable for that reason...

Medicine knows a lot about CLL, and research is making small breakthroughs every year, but some things like fatigue and night sweats etc., which are quality of life issues, are not researched unfortunately.

~chris

[Hidden in reply to Cllcanada]

Thanks Chris, My night sweats are not that bad, fatigue is my worst problem, I have been off work for four weeks so far, I am also having things investigated regarding my blood sugar, my levels keep dropping to about 3.2, my consultant re CLL reckons my sweats and fatigue is related to that, so I will see what the Endocrinologist say's when I see him

[Cllcanada Top Poster CURE Hero]

The late Dr. Hamblin, a renown CLL specialist wrote about CLL fatigue a number of years ago, offering some insights... some doctors feel it is not fatigue in the true sense, but rather more like being 'sick' on a continuous basis, due to a confused immune system... you can read about it here

mutated-unmuated.blogspot.c...

[ygtgo]

Hi there thundercat

I have been lucky in the fact that I am in my eighth year of Watch & Wait, never having to have any treatment for my CLL., and that my Consultant Haematologist's and GP's have all accepted that my bouts of fatigue and repeatedly hard to shift infections are due to my CLL.

Today, I am experiencing a bad bout of fatigue, I had a good nights sleep, have not left the house or done any sort of physical activity ...... and yet I have no life in me.

As I am slowly progressing with my CLL with no treatment as yet, so I would have to surmise that your Haematologist would place me in the early stages camp, but my experience tells me that my CLL and fatigue go hand in hand.

[sparkler]

Hello Thundercat and welcome to the group.

Though I'm sorry that you have been diagnosed with CLL and have need of us, I'm glad that you have found us.

In the words of my CLL Specialist to my GP, "......fatigue which is very common in patients with otherwise asymptomatic CLL. This is notoriously difficult to treat." Many of us, including me, are plagued with this symptom.

As you have seen, this is a good place to find information and to ask any questions you may have. There are many of us here, at different stages of CLL/SLL but all will remember the feelings, at diagnosis and the difficulties in both coming to terms with this Cancer and understanding it.

Please take a good look around the discussions here and feel free to ask about anything on your mind.

Warm wishes.

sparkler x

[Hidden]

Thank you all for the warm welcome and comments/replies

[Newdawn Administrator]

Hi thundercat,

Your CLL story is very similar to mine in that my GP was monitoring me prior to diagnosis and my levels were in a similar range. I was dx nearly 18 months ago and am on W & W too. Your levels are still relatively low but I wondered if a CT scan has been suggested to look at the existence/extent of enlarged nodes etc. Something your haematologist might suggest at some point because you mention enlarged nodes in your neck.

I agree with others. Despite so many CLL'ers reporting debilitating fatigue right from an early stage, many physicians don't recognise the link. Are you managing to sleep well because it's early days for you and this dx takes it's toll emotionally too? Work must be a worry for you.

See what the endocrinologist says because there may be associated reasons and sounds like they're already exploring reasons.

Wishing you all the best Andy, keep us updated and you're in good company here for support and information.

Newdawn x

[Hidden]

No CT scan has been suggested at this stage, when I got back in 3 months I will see if they can arrange one for me, you never know, They might say yes

[Newdawn Administrator in reply to Hidden]

It's not always offered or felt necessary thundercat, but I felt reassured by it as you get a good starting picture which can allay fears.

[Hidden]

Hi Thundercat

Welcome to the club to which we wish we didn't belong. Lovely members here who are always wanting to help. I'm sure that once you come to terms with your diagnosis you will not feel so alone, I know being on this site has helped me and many others.

I was diagnosed 3 years ago with exactly the same Absolute Lymphocyte Count (ALC) as you, and with nodes on my neck. I too had a 3 month appointment. Scary thing being diagnosed, but all is ok and no need to panic in most cases this is a long haul illness. We all know and sympathise with how initially CLL seems to take over your life, but try not to worry, it gets easier and this site helps.

Many of us suffer fatigue, and have been told you are not ill enough to suffer fatigue. We are here to say 'Yes we do'.

Varying degrees but a common theme.

Take your time and dip in and out of all the posts and questions and you'll learn at a pace to suit yourself.

Best wishes

Bub

[Oleboyredw-uk]

Hi Thundercat,

Welcome, you have found a good place to share experiences. What you will discover if you've not already spotted it is that there are many nuances and variations in the theme, however most likely people here will between them have similarities with you.

To date I've not experienced sweats as described, or the fatigue to the levels others have, however, i was working in a job with long hours and stress that left me sleeping most evenings. My cll was treated in the second half of 2012 and now I see the middle as well as the ends of films!

Wishing you well, rob

[Beth-123]

Hi thundercat, This is my first post ( been reading what everybody has to say with interest thank you ). My story is just the same, with the added symptons of several rather severe infections, not sure when these doctors are going to accept that day and nights sweats and fatigue donn't happen to normal people. I am currently learning as much as I can about CLL and then plan to see a CLL specialist . There does not seem to be a very comprehensive list of secondary symptoms. I sometimes think if one of these haematologist were to suffer from CLL they might have a better understanding of the more minor symptoms. Thanks to everybody for all the useful links Beth-123

[ygtgo in reply to Beth-123]

Hi Beth

In my time here on this forum there seems to be a running thread, that there can be a problem when symptoms reported by people with CLL are not accepted by some Haematologists‎ and GP's, due to their interpretation of blood counts.

You are right, " there does not seem to be a very comprehensive list of secondary symptoms ", we have on a recent thread ( cant find the link ) been discussing the term ' Watch and Wait ', and how this term does not reflect the experiences of those of us who are ' parked ' in this dormant state.

[AussieNeil Partner Administrator in reply to ygtgo]

Watch & Wait.... or Active Surveillance:

healthunlocked.com/cllsuppo...

[Quarry]

Hi, welcome and your will great great advice here. CLL is such a personal journey (so many variants and each variant effects each of us in a different way.....), this site is great for advice/support/pointers: and as disease is a slow-progresser, you will have plenty of time to understand it (and boy do you need that!)

I am down a very rare alley even for CLL, but I too get 'mild' night sweats (not the drenching bucket jobbies) and consultants don't count these. I think 'normal' in our situation.

On fatigue, I have not suffered yet, but as in posts above, you are not unusual. However keep an eye on your haemoglobin levels (you don't mention these): if low that can cause fatigue.

[lankisterguy Volunteer]

This is the 3rd time I posted this response this week: apologies to the regular members.

CLL affects the immune system, and many childhood diseases can be reactivated. So while these are not directly caused by CLL, CLL does open the door to other infections viral and bacterial. Some of them cause extreme fatigue, some cause high temperatures. The doctors need to test for many possible causes not normally found in adults. CMV, EBV and HHV-6 can be reactivated in immune compromised patients, HHV-6 (Roseola or Sixth's disease) debilitated me in 2012 with severe fatigue and elevated my ALC. Whooping cough got me in 2010. You need to be an active advocate and campaign strongly for the doctors to think about other diseases in addition to your CLL that can exaggerate your CLL symptoms, not just send you away for 3 months without further testing.

Len

[ygtgo in reply to lankisterguy]

Hi Len

Your post again highlights problems that can happen with the ' W&W ' culture associated with CLL, it can send out the wrong signal to medical staff with little/no CLL knowledge.

It's not even exclusive to the medical profession, when applying for benefit - I was told that my health problems I listed due to CLL, carried no weight as I was on W&W ..... or as the decision maker put it to me ... an I quote " your Leukaemia is stable "....

[happyclappy]

Hi All,

I was diagnosed in 2010 and still on 'W and W', with 4 weekly infusions on Privigen (immunoglobulin). Over the last 12 months I've been having some serious tiredness/fatigue going on. As a truck driver this was potentially a road safety issue and was starting to worry me a little, but my employer was not interested and refused to accept that I had an illness. Everyday I would ask to just work my contracted 9 hours but was constantly given a 10/11 or 12 hour job. When I get tired, like most people, I get a bit tetchy and in August this year I spat my dummy out and jacked the job in. I have since found out that in accordance with the Equality Act 2010 they were legally obliged to make reasonable adjustments to my working day, and, because they didn't, they acted unlawfully. Because I jacked in when I did I had taken more holiday than I had accrued, so they want me to pay back £330, which I told them to poke! Their debt collection service wrote to me, I pointed out they had acted unlawfully and I'd be happy to see them in the small claims court. Not heard anymore, we'll see what the New Year brings.

So a friend rang me out of the blue. The farmer he was working for had had to let a driver go and needed someone with an HGV licence, so a very pleasant summer was spent running alongside a combine harvester bringing in the wheat. I've been back with them since last Monday to run the grain down to Southampton. I worked six days last week, starting at 04:15, had a few beers Sunday, while I watched Tottenham get stuffed and now I'm completely knackered! I did nothing on Monday, a few hours work Tuesday and nothing today, slept for 11 hours last night and still woke up knackered!

I've never been hugely self-motivated but the occasions where I 'can't be arsed!' are getting more and more regular. So it's reassuring to read that others are having fatigue issues to, which is why I started this reply, sorry to have dragged on a bit!

Anyway, I've now qualified as an Incident, Fraud and Claims Investigator so if there are any solicitors out there that need an information gatherer in the south east of England, please get in touch.

Merry Christmas and a Happy New Year to you all.

HC (UK)

[pitbull]

Hi All,

I haven't posted for some time mainly due to lethargy (could that be another word for fatigue ;-)) but I have been reading the forum regularly. Welcome Thundercat and Beth - 123, you will both find lots of information here and a lot of friendly people we are all fighting the same fight and l;earning from each other.

I was diagnosed on Valentines day this year (2013) and yes the emotions were running wild for a while, it is forums like this and Macmillans that I found lots of help and advice and of course CLLSA is a great place for information. I too get very tired even though I sleep well, I also have sleep apnea so my tiredness is always attributed to that, I personally know better, while I don't suffer night sweats, I do sometimes have sweats (hot flushes) during the day and have always thought it was due to the CLL, maybe I am wrong.

Anyway, welcome and get the most from this site and feel free to rant when you are feeling down, we all understand and its a great place to get things off your chest.

Kirk

[Newdawn Administrator in reply to pitbull]

Hi Beth and any new posters,

Sorry I missed your first post Beth but great to hear from you and new posters on the site and wishing you well. I've come to the conclusion that some doctors take the view that 'if we don't know, it's a no-go!' so tiredness even at low presenting lab levels is not adequately acknowledged. I wish there was greater scientific/research interest in this vital area as it can be so debilitating.

And in the case of happyclappy, it's a potentially hazardous omission because employers won't act if medics don't support the limitations. Some employers simply take the view if you look ok, you are ok! But good on you happyclappy! Great to hear you stood up to your uncaring employers and even better than you've managed to retrain. Hope you get loads of work in your new area of expertise.

What a day to be diagnosed Pitbull, Valentines Day! The one thing CLL isn't famous for is engendering feelings of romance! But I doubt any of us ever forget 'The Day!'

Best Wishes to all,

Newdawn x

[kathypawpaw]

Andy, Sweating IS related to your CLL. A feeling of being hot all the time is too. Please find someone who specializes in this condition.

[SueMcNabb]

I get very fatigued as well and was told the same thing....Truly I think it is the CLL, but maybe I'm just being negative Nancy? Sweats as well. I don't have the sweetest Doctor and he actually yells at me (only doc in my area) and asks "Have you seen your primary care Doctor?"....I usually calmly say back, I'm asking you because I thought it might be related to the CLL. No! Okeedokee, see ya in three months. I'm 57, have been in stage 0 since 2011, and I have felt and seen things with my body that I am pretty sure are not "normal", but who am I? If you are able, (which thank God I am....Just take a nice nap!) Sorry Andy.....hopefully you really can get some rest and try not to worry. One day at a time and try to enjoy each one.