Trying to understand CLL

My 58 year old husband has recently been diagnosed with CLL

He has swollen lymph nodes under his arms in his neck and groin and at the back of his knees

However all other organs are ok

However he does get tired very easy and he sometimes gets out of breath he also has a very itchy rash all over his body

After being diagnosed in July 2017 he had his first check up with bloods on Friday

His consultant is a CLL specialist and assures us his bloods were very good which is good news however she also said his tiredness itchy rash and breathlessness was nothing to do with his condition

Has Anybody else had these symptoms or should I go back to doctors to get him checked out in case something else is wrong

He suffers with anxiety which is why I'd didn't want to stress him out any further

Any ideas would be welcome

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28 Replies

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  • After getting a CT scan for my CLL, the doctor noted my heart was slightly enlarged. I went to the cardiologist who gave me an echocardiogram, and said my heart was within normal size.

    The cardiologist noted my left ventrical ejection fraction was 56. He wanted it to be in the 60s.

    I am experiencing tiredness and some breathlessness. I attribute some of this to reduced heart ejection fraction. I will be 59 in October.

    Oh... the cardiologist told me no alcohol. Also my Dad and Grandfather have/had CHF so decreased heart performance could be genetic for me.

  • Thank you your reply

    Glad you are being monitored

    My husband had CT scan all organs ok including heart

    I will take him to see his gp

  • I got diagnosed with CLL May 16. My next haematology appointment is Oct17 - still on w&w - I get dog tired suddenly, out of breath more than I used to, my joints dull ache and my legs get tired if I stand too long. Some of this is because I'm ageing true, but I'm consistent with what others describe on this forum. No rash but lots of swelling - to use an indelicate phrase - my nodes are up and down like a bride's nightie.

    Hope all proceeds well with your husband.

  • Thank you I hope all goes well with you

    My husband had a 4 week check because his nodes were up he has now gone to 5 months checks

  • Do you mean Oct of 16? Tell another joke..I need to laugh!

  • Welcome to the Community

    I am 61 year old male who was diagnosed in 2017 and the issue of fatigue not having anything to do with CLL is by far my biggest disagreement with the medical community

    Due to a different issue i see and endocrinologist 4 or more times a year and have over 10 years of blood work with CBC panels

    My blood work was still perfect in 2015 and in hindsight there is a very clear pattern that started in 2016 and had various effects on my health

    I was still able to finish trail running events of 12 hours and longer until April 2017 when the CBCs started to get really concerning and I was diagnosed with CLL

    So nobody is going to convince me that going from finishing really difficult events to struggling getting through a work week is not connected

    Tom

  • Sorry to hear that

    You are obviously very fit to begin with

    My husband just gets tried from doing his job

    He suffers with anxiety and unfortunately the doctors seems to blame everything on that

    Very frustrating

  • Tom, before my husband was diagnosed, I noticed his tiredness. I mentioned it to him several times over the next few months before his annual checkup bloodwork announcing CLL.

    FATIGUE has been a problem from the get go, with chemo 6 months straight or with Rituxin every 12 weeks for maintenance doses. Then again during his FCR rounds.

    You are correct. Extremely tired is normal for CLL.

    Wishing you the best in the future.

    farrpottery

  • tiredness and itchy rash seem to be related to CLL in my husband's case

  • According to my husbands resent blood level tests everything is in order

    He isn't at the stage to have these symptoms but they are there

    I'm guessing we will have to do more investigating

    Having said that they didn't detect his CLL from his bloods it was from the biopsy of one of his lymph nodes

  • While there may be another reason for your husband's fatigue, when everything else is ruled out, his CLL most definitely can be to blame even when 'medical experts' (who probably are relying on a few minutes coverage of CLL from long ago their college days, say that "He isn't at the stage to have these symptoms" . As you say "but they are there".

    Seems like your husband has the SLL form of CLL, where the clonal B-lymphocytes don't appear in the blood, but prefer to congregate in the nodes. So a check of his blood won't accurately show his true tumour burden. Further, until recently (and remember that only CLL specialists will be across this new development), it was thought that how active CLL cells were in the blood accurately represented how active they were in lymph nodes. We now know that CLL cells are in their dormant phase in the blood.

    healthunlocked.com/cllsuppo...

    Jm954 is absolutely correct in saying that "Tiredness and CLL do go together at any stage of CLL, including watch and wait." Many community members will attest (myself included) that severe fatigue can occur when the CLL blood count (Absolute Lymphocyte Count or ALC is low), and paradoxically can be much less of a problem when the ALC is much higher. We can certainly be subject to other causes of fatigue, particularly as we grow older, with sleep apnoea common, but if your husband's GP can't find another cause and his CLL specialist continues to dismiss it as not due to his CLL, seek a second opinion.

    Neil

  • Many thanks for this information

    He most certainly will

  • My husbands consultant keeps referring his condition to CLL which does seem strange when it sounds more and more like SLL

  • If his absolute lymphocyte count [ALC] is consistantly raised, its CLL.

    Some CLL is very bulky with a lot of node involvement, which is often mistaken for SLL, which present in the nodes and spleen primarily, but has a normal absolute lymphocyte count [ALC] .

    If his blood work is normal then it would be SLL. SLL and CLL are considered the same disease, they differ in the way they are staged, but treatment is identical.

    There is also a chance it could be Monoclonal B Lymphocytosis (MBL), which used to be called 'pre-leukemia' and it is non-proliferative.

    ~chris

  • Many thanks for your information

  • When I clicked on the Healthunlocked link it said it couldn't find it. I found the article that I think you're referring to here

    cllsociety.org/2015/08/ash-...

  • That's the article - and I've now fixed the link, thanks.

  • And here is the link to part 2 of the video interview.

    cllsociety.org/2015/09/ash-...

    Very interesting that CLL leave the lymph nodes and bone marrow and move into the blood when they have aged and are worn out. All that CLL cells live about 100 days compared to red blood cells that live 120 days.

  • Tiredness and CLL do go together at any stage of CLL, including watch and wait.

    However, it's important not to attribute everything to CLL and to do the usual checks when you have symptoms that don't correlate very well with the blood results, so definitely back to the GP.

    If he's also overweight he may have sleep apnoea and this is a useful screening tool

    britishsnoring.co.uk/sleep_...

    Hope this helps a little.

  • Thank you for your reply

    Definately agree with a GP visit

    Noo he is under weight unfortunate due to his anxiety issues

  • The symptom that led to my diagnosis was a rash that began under my left arm and spread across my chest and was terribly itchy. It has come and gone (never completely gone) ever since. Every skin condition imaginable was ruled out, and there was never any clear cut cause established. I have also become fatigued quite easily over the last several years.

    I'm cared for by one of the leading CLL specialists in the States. He's quite clear that the fatigue is a product of cytokine activity associated with my CLL, but just isn't sure whether the rash is or not. I'm on W & W and try to count my blessings that these are pretty much my only symptoms at the moment.

    Stay strong, all!

  • Just a word to say that I agree with all those who have told you that fatigue is definitely linked to CLL, no matter what your Dr may say... for about a year before I was diagnosed, I'd drop off on the sofa anytime after 6pm, and simply could not prevent myself by an act of will (I had always been able to force myself to stay alert until much later previously, no matter what). I did, eventually, notice swollen glands in my neck, and even later bothered to go to the Dr, and got diagnosed... at that point, my bloods must have been OK as I was told I'd be on w&w... in the event, the CLL progressed very quickly and I soon got chemo treatment.

    Since recovering from that, I no longer have those extreme fatigues. Sometimes, a short afternoon nap is needed, but that is (I think) age-related!

    All the best.

  • That's good that your are recovering

    Thank your for letting me know

  • Not just 'recovering'... I'm absolutely fine now (did have a skin cancer 4 years ago)... and feel much better than in the 6-9 months before chemo.

    The current wisdom is that treatment should be delayed as long as possible... this makes sense, as the outcome of treatment is unpredictable, and I think there is a sort of 'law of diminishing returns' with repeat treatments, though nowadays with new drugs that may no longer be the case...

    If it was possible to judge in advance how well someone might react, then IMO at least some people would/ought to opt for earlier treatment, but I don't think we're there yet in terms of medical knowledge to take those decisions.

  • Hello trswarranty and welcome.

    The one thing I've become increasingly convinced of in the 5yrs & 3 months (not that I'm counting), since my diagnosis is that CLL isn't the most obedient pupil for doctors and doesn't always follow their rules or expectations. Some specialists have kept pace with emerging research and theories but I find the notion that some medics can ignore a huge amount of experiential and anecdotal reports very odd indeed. It does seem that people with bulky nodes and greater organ infiltration seem to experience fatigue more acutely because the tumour burden is perhaps more active than in the blood but that's my theory.

    It's also somewhat peculiar to me that medics can accept CLL infiltrating or impacting on other organs but will dismiss a possible impact on the biggest organ of all, the skin! Just because they don't know, doesn't mean it's less of a reality but the obvious proviso is to exclude other reasons first. With a sudden rash in CLL, suspect shingles first and then default back to other causes.

    Anxiety does indeed exacerbate so many physical conditions but the concern is some doctors will happily hand their diagnostic hat on it and the real cause can go unexamined. I've got this problem presently with excruciating cramp and internal heat at night that has me feeling I might implode! I think sometimes medics see the only solution for all ills in CLL as treatment and this shouldn't be the case. We do have non CLL health issues too but unfortunately they can be intensified by the immune dysfunction.

    I'm sorry that your husband is experiencing bad fatigue but be assured that he's in a cast of thousands of CLL'ers and for the most we are neither hypochondriacs nor deranged! This blight on our lives isn't a bonus and it isn't desirable! Get other possibilities checked out but trust to your own instinct. We know our own bodies very well.

    I had to chuckle however when I read this saying because it sums up how I'm feeling some days;

    'I'm not a night owl or a morning bird. I'm some form of permanently exhausted pigeon!' :-)

    Best wishes,

    Newdawn

  • Thank you for your input really appreciate all the comments

    They have opened my eyes and been really

    Helpful

  • My husband was diagnosed with CLL about two months ago. So far swollen lymph nodes and raised WBC/lymphocytes are the only symptoms but he recently developed an itchy rash. Thought it was spider bites but now not so sure given comments above. It's on legs, lower back, armpit.

  • Hi,

    I was just diagnosed in August 2017. I went to the doctor because I was constantly tired and I am 57 years old. I was very active swim and walked at least 4X a week. I went to two oncologists and both told me my tiredness has nothing to do with my CLL. I beg to differ they don't live in my body.

    Wishing you luck with you husband.

    Angie

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