hospital appointment

[welshlady52]

Saw my haematologist this afternoon....i have no swollen nodes anywhere,spleen and liver are fine....did have a problem with platelets but theyre back up again. My lymphocyte count is now 87....it was 70 in october 2013......he said it is progressing but very slowly. For some reason this has freaked me out and is making me think i will need treatment soon. Yet a lady i have spoken to who also has CLL said her count is in the thousands and she has been on w and w for 13 years. Am i getting too paranoid????

[Newdawn Administrator]

If your ALC has only risen from 70 to 87 in nearly 2 years Welshlady and you have no enlarged nodes, spleen or liver and your platelets have rallied, I'd be celebrating! Are you feeling well generally?

Looking at it logically, CLL doesn't often just stop and suspend in time but your progression is reassuringly slow. It's all we can hope for and 'progression' simply means not standing still but not galloping! And you're right, it's not just a numbers game.

Feel reassured and great result!!

Newdawn

[welshlady52 in reply to Newdawn]

Thank you for the reply....i didnt know that was what they call the ALC....wondered what it was when people have mentioned it before. You have reassured me and thank you so much. Unfortunately i am not in the best of health without CLL. I have cervical canal stenosis which is causing me so much pain.....but just have to try and get by on painkillers etc.....i will definately count my blessings regarding the CLL....many thanks and hope you are not too bad x

[AussieNeil Administrator]

The lady you have spoken to probably has her blood tests done at a laboratory where they report the blood cell counts in a volume a thousand times yours, so her count is naturally going to be a thousand times yours for the same concentration of blood cells. There are two standards used internationally, with the thousand times higher count range most common in the USA, but also used in France and a few other countries. But even in the USA both standards are use - it depends on the testing laboratory.

Irrespective, your slowly growing count is no cause for alarm and our community has plenty of members with counts similar to yours. The highest counts I know of in this community are three to four times higher than yours! At your current rate of ALC increase, it will take you about 20 years to get to their levels and your ALC could well stabilise before then. Under the internationally recognised treatment protocol for CLL, CLL patients with a very high ALC are not treated if the patient is otherwise well. For more about why a high ALC in CLL patients is not, on its own a cause for concern and thus is not a trigger for treatment, read these pinned posts:

When do white count numbers trigger treatment?

healthunlocked.com/cllsuppo...

How high can you go? (And what does it matter?)

healthunlocked.com/cllsuppo...

Why we need to track the absolute lymphocyte count (ALC) not white blood cell count (WBC)

healthunlocked.com/cllsuppo...

Sorry to hear you have another chronic condition causing you pain, but at least you can relax regarding your CLL.

Neil

[welshlady52 in reply to AussieNeil]

Thank you so much Neil.....it is so nice to feel reassured and that i can try to relax regarding this disease....means so much to me that people like yourself will take the time to answer any questions we have....thank you