What Should I Do ?? Sit and wait ????

[CouldBworse]

Hello Group. I am a 60 year old Man who was recently diagnosed with CLL in May 2018. I have had multiple blood test and Scans. My WB is double what the count high range should be. My lymph nodes are all within margin. My remaining blood counts are good.. My Hematology Oncologist said that for now we keep an eye on it. I don't understand this ? Also, I too have days where I feel nauseous and there are other days when I feel just blah ! I am being seen at one of the best hospitals. Any suggestions ?

[AussieNeil Partner Administrator]

Welcome to our community! You've already taken a great step towards learning what to do by joining. First off, you need to monitor your lymphocyte count, not your WBC. You seem to be in an early stage. Some of us have lymphocyte counts 20 or more times the upper WBC normal and are still well enough to keep deferring treatment, termed Watch and Wait. This pinned post covers how to determine when treatment is needed.

healthunlocked.com/cllsuppo...

While you begin watching and waiting, here's a collection of tips to improve your life with CLL.

healthunlocked.com/cllsuppo...

Neil

[CouldBworse in reply to AussieNeil]

Thank you.. my absolute lymphocytes are 16770 and the lymphocytes are 86% .. what does this mean ?

[AussieNeil Partner Administrator in reply to CouldBworse]

16,770 is the number you need to track. Forget about the percentages for any white cell types as what matters is that we have enough to fight infections. Some of us, still untreated, have lymphocyte counts over 300,000, so the absolute number isn't generally a concern. Below 30,000, counts can vary considerably over time up and down, due to variations in the other lymphocytes in the count, T and NK lymphocytes, healthy B lymphocytes and of course CLL lymphocytes.

Specialists are more concerned at how fast the CLL is growing, but wait until the lymphocyte count exceeds 30,000 before measuring doubling time. Doubling in under 6 months is a sign for closer monitoring and if other concerning symptoms also coincide, it's a trigger for starting treatment. Incidentally, there are two scales used. Some labs don't include the thousand.

Neil

[CouldBworse in reply to AussieNeil]

Thank you for sharing your experiences and thoughts. I is reassuring to hear from those who have a similar illness. Have a fabulous day !

[seelel]

Hello, I was once a 59 year old man diagnosed with CLL with a lymphocyte count at 8.0.

13 years later, I'm a 72 year old man with a lymphocyte count that has slowly nudged its way up to 30 or so. This is clinically insignificant as long as there are no B-symptoms or other adverse blood counts.

Feeling nauseous or feeling blah can happen to us without CLL, so they are just as likely to be lifestyle effects.

I gave up watching and waiting after 2 years - it became obsessive and boring. So worry for a bit and then leave it to your haematologist to do the watching and waiting. Life can be lived well with CLL. You may just have the indolent type that will do very little while you get on with life. Things can unfold very slowly in this club.

[CouldBworse in reply to seelel]

Thank you for sharing your experiences and thoughts. I is reassuring to hear from those who have a similar illness. Have a fabulous day !

[cujoe]

Just remeber, it really Could B Worse,

I'm in same "bucket" with seelel. Same age at diagnosis and also 12+ years down the road with no treatments and no discernible side effects . . . ever.

Try not to associate every minor health anomaly to CLL and focus on getting on with living a full life. You should now have a better sense that every day is a gift, and that each one should be treated accordingly. Be Well - cujoe

[CouldBworse in reply to cujoe]

Thank you for sharing your experiences and thoughts. I is reassuring to hear from those who have a similar illness. Have a fabulous day !

[cujoe in reply to CouldBworse]

The pleasure is mine. And having a fabulous day is my goal each and every day. Try to make it yours! Be Well - cujoe

[Cammie]

Great advice from Neil again!

Just one thing you should be aware of so you don’t get confused is that in US they measure and report as 16,700 whilst in other countries such as U.K. they measure in thousands which would equate to 16.7

This is important to understand so there is no confusion.

In answer to your question don’t sit and wait get on with your life live it as normal! You may have years of watching and waiting. Learn from reputable sites such as this and cll society in US.

Avoid Google.

Ask any questions here if you wish as there are no stupid questions!

[Bieler]

I’m in the same boat. Diagnosed 4 years ago. Still on W&W. I also went to Mayo just for reassurance and joined their study. My Dr there explained that they found that treating right away (instead of W&W), was not having good results. Patients got sick from the meds and got more infections. They found that it’s not necessary and makes it worse not better. You may never need treatment. There is no cure yet but it is highly treatable and new meds on the horizon every year. Try not to fret. Just take care of yourself and follow up with your doctor visits. Remember: worrying doesn’t change anything. Be proactive, stay off google and live your life to the fullest. It’s going to be ok.