Maybe cll doctor is worried am confused - CLL Support

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Maybe cll doctor is worried am confused

Sasperella profile image
9 Replies

Hiya for five weeks i have had a fever and my face feels on fire mainly morning and afternoon i have had neck and ear pain aswel and pains in my left shoulder and chest and i have had large tonsils for around 5month doctor did a bloodtest 2 week ago my wbc was 17.5 today its 15.4 doctor said my wbc was 15 in january so hes checking them again in 2 weeks he his worried as my sister had non hodgkins lymphoma is it possible for my lymphocytes to be high and wbc high and the levels drop on there own if you have cll because i thought they would just go up n up thank you in advance for any advice for this worried mum

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Sasperella profile image
Sasperella
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AussieNeil profile image
AussieNeilPartnerAdministrator

CLL is one of many Non Hodgkin's Lymphomas. In your case, you haven't mentioned your lymphocyte count, which needs to be significantly above 5 for CLL to be a possibility. Your WBC changes are really quite small and given your symptoms, are most likely high because you have infections and/or allergies, which are causing a range of white cell types to be outside their normal ranges.unI

Doctors aren't generally that familiar with different leukaemias and lymphomas and can become overly concerned with blood test results when a CLL specialist would be quite relaxed. Be thankful that your doctor is being proactive, but you are a long way yet from being investigated for blood cancer. First your doctor needs to observe how your white cell counts change over time and only if they remain a cause for concern refer you to a specialist.

Neil

Sasperella profile image
Sasperella in reply toAussieNeil

Thank you for your reply yes i thought he may just be over reacting because his dad also as nhl and his uncle as cll i dont no how high my lymphocytes are all i no is he said they were high and if my wbc is still out of normal range in 2 weeks he was sending me to the hospital once again thank you for your reply it as helped

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply toSasperella

Any chance that your sinuses are infected and blocked? Are your tonsils infected? I agree that your doctor may be overreacting about CLL, but what is being done about your other issues? Infection and / or allergies need to be ruled out. Have your symptoms been seasonal?

Sasperella profile image
Sasperella in reply toMsLockYourPosts

I have had many many throat infections when i was younger originally when he did my bloodtests it was because i have had a fever between 37.3 and 39 for five weeks and i have had not sweats but my face and neck and chest have felt really hot and my ears have been sore for months now my neck is sore but he couldnt find any infection i have had antibiotics to see if they worked chest xray water samples i am not one to go to the doctors unless am feeling really ill or strange i have had a quincy pneumonia and chest infections within 4month prior to the january wbc and have had quite a few normal colds this year but didnt go to the doctorswith them so he said because my last 3 wbc where higher than the range thats why hes concerned but i think it maybe due to the fact my sister was simular to me but they didnt test for anything until about 12month after she 1st became ill as they put ot down to asthma allergies ect so think he just wants to rule out the more serious stuff first this time which i am grateful for

Sasperella profile image
Sasperella in reply toSasperella

Forgot to say he isnt doing anything at the mo for my fevers or hot flushes or my ears or neck or my breathlesness as he seems to be more concerned over my blood results

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toSasperella

There is a definitive test for CLL and a few related blood cancers which either your doctor or more likely a haematologist can order. But I suspect your doctor still considers your blood test results reflect your fevers and is waiting for these to resolve to see how your blood counts change and whether they return to normal. You should ask him why he isn't being more proactive about your fevers or hot flushes, etc.

While you are at a greater risk of developing a blood cancer because of your familial history, it is still quite low. Australian Leukaemia Foundation research of a few years ago found that doctors (GPs) saw on average about 6 cases of lymphoma (of which CLL is the most common in older people) in their entire career...

Sasperella profile image
Sasperella in reply toAussieNeil

I dont know why he isnt doing anything for my symptoms he just says wait to see these next blood test results amd if they are still out of range then hes referring me to the hospital so i dont know thats why i am confused because if am not taking anything for my symptoms then how will my wbc go back to normal has surely a viral infection would of gone after 5 weeks this is my 6th week with the fevers hot flushes and they dont seem to be getting any better

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toSasperella

At your next appointment, ask why he is taking this approach. Some illnesses do take longer to get over, particularly as we get older...

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply toSasperella

You might want to see a good immunologist if you are getting nowhere with your doctor.

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