Symptoms but blood count stable.: HI, can anyone... - CLL Support

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Symptoms but blood count stable.

Eric70 profile image
8 Replies

HI, can anyone explain why I have symptoms i.e. night sweats, infections, loss of weight, and yet my blood count is relatively stable? My doctors ignore these facts and just look at blood results as the total result of what is going on in my body.

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Eric70 profile image
Eric70
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8 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

How high is your Absolute Lymphocyte Count [ALC] ? Have you asked for a CTscan to see what's happening?

Counts are just the tip of the iceburg... B symptoms like you describe should be taken seriously...

I would get a second opinion...

~chris

Eric70 profile image
Eric70 in reply toCllcanada

Many thanks for your reply Chris. I have never received an ALC reading. In fact I have received very little information from my consultants over the last 9 years or so. I'm due back at the hospital on Friday, so I shall be making enquiries then. Many thanks again.

Rafe profile image
Rafe

Ct would be a good idea. lymph node involvement doesn't always show in blood tests.

Bubnojay profile image
Bubnojay

Hi Brendaword

As you are going to the hospital Friday, do ask for copies of your blood tests over the last 9 years you need this to see the trend your blood shows. Ask if the doctor is a Cll specialist haematologist and if not ask to be referred to one, as an urgent case.

It really will help someone to help you more if we knew what country you live in. Then our more knowledgeable people could advise more appropriately on specialists available to you.

We need to be proactive to ensure we get the best treatment.

Good luck Friday

Bubnjay1

shazie profile image
shazie

I had huge nodes all over but my CBC was almost all normal. I started treatment after 14 months of WW due to enlarged nodes.

Eric70 profile image
Eric70

Hi, many, many thanks for all your replies they have been both informative and helpful. I am in Manchester in the UK. I shall let you know how I get along on Friday. Many thanks once again.

Germangerd profile image
Germangerd

Due to my experience I too agree completely with those, who propose a second opinion plus the consultation of a CLL- specialist. It should be a nogo to only react on your bloodresults. Your overall condition absolutely has to be considered to decide about the very best and individual therapie.

Eric70 profile image
Eric70

Further to my last post. Today I finally, after 8 years, saw a consultant that specialises in CLL and have been introduced to a specialist nurse. They seemed to take all my symptoms seriously, although my blood count is still stable, they said because of all my other symptoms then they are looking at chemo treatment within the next 12 months, though that may be earlier if things get worse. Next appointment is in 3 months time. By the way, my ALC was 23 today but has been as high as 30 apparently in earlier years and my WBC has been varying considerably over the same period. It is amazing the difference it makes when you are aware of what you are talking about, so many thanks to you all for brilliant advice, it really has made a difference today and it has eased my mind considerably.

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