I was diagnosed with CLL by my GP 18 months ago. My doctor of many years retired and I saw the new doctor for some abdominal pain I was experiencing. He did blood work and they called me and asked if I had always had a high white count....and I told them that I wasn't aware of any. They repeated the blood work with fasting a week later. And again my white count was high and they asked me if I had a hematologist....scared, I told them of course not so they recommended one and I made an appointment. I was in total shock. No one in my family had ever had cancer until the previous year when my brother was diagnosed with Lymphoma (another shock). He had chemotherapy and is in remission and has been for three years.
So I saw the hematologist, he wasn't too concerned about the white count. Said the GP records indicated my white count had been high for about 8 years. He would draw enough blood to repeat the standard test but take it a step further if the results warranted. Which they did. After a week of waiting, the test did confirm that I have CLL but in an indolent stage. All this to say that I am glad I found a place where I can vent and admit I'm scared. Everyone (family and friends) tells me that I will outlive this and it isn't anything to be concerned about. I go every six months for blood tests at my GP until something warrants further treatment.
This week is another six month checkup. Since my last checkup the night sweats have begun and are awful....I have them about 50% of the time and my bedding is absolutely soaked. I guess I an a little nervous that this is a sign that I am getting closer to needing treatment.
It seems that everything that I read doesn't give me info as to what progression will be, and perhaps no one really knows. Thanks for listening and if anyone has advice about the night sweats it would be greatly appreciated. Other than those and the fatigue that has also increased in the last six months I am not experiencing any other symptoms, that I know of.
Written by
bupton
To view profiles and participate in discussions please or .
I can understand your very natural concerns because it's clear that these drenching night sweats are becoming a very real issue for you and it's true that they can be indicative of the CLL becoming more active. It sounds like your old GP felt that your levels were indolent enough simply to be monitored by him for many years.
Are you able to give us any blood work levels that would assist people to help? I can't get a sense of your level or CLL staging at the moment bupton.
Naturally this needs to be carefully discussed with your haematologist when you go for your 6 monthly check up this week. And I emphasise with your fears. You'll probably learn then whether there's been a significant increase in your levels to explain the escalation in the night sweats and increasing fatigue.
But you're absolutely right in saying its sometimes difficult to accurately plot progression because sometimes it can take us by surprise and gallop ahead after many years of indolent presentation. But people do explain periods of drenching night sweats that happen periodically and don't automatically indicate treatment is urgent. Sometimes infection is a reason. Please let us know how the consult goes.
Wishing you well. I'm sure others may have more definitive advice for you.
Thank you so much. I will report my results after I get them. My oncologist/hematologist said that he is more concerned with my lymphocytes than my white count. Off the top of my head I don't recall those numbers, however, I do have them at home. I just recalled the further test he did. It was the flow cymotry (sp?) test that confirmed the CLL.
Yes that's absolutely right bupton, it's the ALC (absolute lymphocyte count) once it goes over 30 that is monitored for doubling time (usually over a 6 month or yearly basis) because that's an indicator that the condition is progressing.
And the flow cytometry test will have confirmed your CLL diagnosis.
You'll know much more after your consult and you need to be asking how your lymphocyte levels have been progressing. But don't get too hung up on the numbers alone. Other factors like how you're feeling generally and the impact of the fatigue and night sweats are important indicators if they impact on your quality of life.
Your white cells include your lymphocytes, so your white cell count MUST be higher than your lymphocyte count. I can't understand your two count figures either. There are two standards for counting the cells in different volumes, with one standard having 1,000 times the volume of the other, so a lymphocyte count of 30 in the UK generally corresponds to a lymphocyte count of 30,000 in the USA - but it depends on the measurement laboratory. Unless for some strange reason, you had your white cell count provided from a different laboratory than the one that provided your lymphocyte count, the figures should be roughly the same, with the white cell count usually between 1 and 10 (or 1,000 and 10,000) higher than the lymphocyte count.
It is most likely that your count of 6931 is actually 6,931 or 6.931, which is not much higher than for a person without CLL. That generally corresponds to a very early stage of CLL, but do ask your specialist what stage you are.
Thanks Neil....the same lab did the whole report. I am in the US and it shows the white blood cell count at 15.1 and the units as thousand/ul and the healthy range as 3.8-10.8. The Absolute Lymphocytes are 6931 and the unit of measure is cells/ul with a healthy range of 850-3900 according to the report. But the oncologist did tell me last year that I was in an indolent stage so the action was watch and wait... I just want to wait for the next 30 years.
Thanks for clarifying that. So my interpretation was correct and you do have a rather low ALC for someone with CLL. Your 30 year W&W target may well be achievable and if not, by the time you do need treatment, we may well have a cure. .
I've never come across mixed white cell count units like yours before; you had every reason to be confused.
my white blood cell count was 15.1; and absolute lymphocytes were 6931...these results from April 2015 blood work. The previous six month lymphocytes were 6062...some tell me that this is no big deal, but they aren't living with it...and I really want to believe that I will out live it. I just turned 64. I had a hysterectomy many years ago, so don't believe the night sweats are related to menopause as I have been on hormone therapy for a long, long time. So am I really paranoid???? Are there so many different scenarios that there are no concrete answers????
No you're not being paranoid you are just anxious and concerned about the uncertainty of it all. But don't panic because it looks very much like your levels are still quite low. CLL isn't the only reason for nights sweats. Everything from thyroid problems to anxiety to sleep apnoea to underlying infection can cause them.
Speak to your Consultant and share your concerns. It certainly doesn't sound like your levels are galloping along so take some reassurance from that. Stay calm, you're doing ok and this can be treated when the time comes.
Hi Bupton. Feeling scared is only natural and this is definitely the place to rant! I always feel bettter when I've voiced my fears to a non judgemental audience. Sometimes our friends and family are too close.Peggy.
Hello buton,wellcome you are amongst friends here,Like you I was diagnosed last December after a flow cymetry test,I had been feeling tired and picked up lots of infections although not sure if they were down to CLL, after seeing the Haematolagist he told me it had been around since 2006 and was indolent,he didnt think I would ever need treatment fingers crossed but we just dont know,my GP left and never told me,the next GP decided to tell me in a bad way saying I would need a biopsy and Chemo she obviously knew nothing of about CLL,it was devastating at the time,what I am trying to say is dont worry untill you have too Chronic usually means Chronic,I have had so much comfort from fellow CLLers on here no question is silly and there is always sombody there,I have ask all sorts of things so ask away and I wish you well,I also have my six monthly FBC this week so a little nervous.best wishes Maggie [sunflower]
Drenching night sweats are one sign of progression. Other signs are unexplained persistent fever, unexplained weight loss, red skin patches, generalized itching, chronic fatigue, and low blood counts.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
.
Night sweats
Should I go to a CLL specialist?
CLL and Heat (Night and day sweats)
Flu vaccine and sweats
