First post but have been reading lots of q and a's

[Trace25]

Hello everyone, my name is Tracey (trace), I am 50 years old and exactly 2 years into watch and wait. I was initially told of my diagnosis by my GP on the phone whilst at work. He told me a website name and said i should have 6 monthly blood tests, but that is all i have been told. I asked for a print out of my blood test but dont know what the numbers should be to keep an eye on, do any of you know?? Nice to meet you all xxx

[Newdawn Administrator]

Hello Trace and a warm welcome to you!

This is an excellent explanation to enable you to understand your blood results;

cllsupport.org.uk/cll-sll/s...

All components of the blood panel are important in their own way but the key players are the ALC (absolute lymphocyte count) which isn’t surprising seeing as CLL is a cancer of the B lymphocytes, RBC (red blood count) and haemoglobin and platelets. When the RBC/Hb drops low it can cause anaemia/fatigue/breathlessness and low platelets can make us more prone to bleeding and bruising. Our neutrophil level is very important too because in simple terms, it’s a key indicator of our ability to fight infection

Have a read and listen to the video and I’m sure you’ll feel better prepared with questions for your haematologist at the next consult.

Hope you’re doing well generally and I think the way the diagnosis was broken to you was totally inappropriate.

Are there any particular questions you would like people to help you with?

Best wishes,

Newdawn

[AussieNeil Partner Administrator]

Hi Trace and welcome to our community,

While the way you were informed of your diagnosis leaves much to be desired, you've obviously been diagnosed very early on to only need monitoring blood tests done every 6 months. I was initially on monthly blood tests and now 9 years later I have tests every 2 months, but did get to 3 monthly at one stage in my watch and wait journey.

You'll find information on what blood test results to watch and a spreadsheet for recording and tracking them here:

healthunlocked.com/cllsuppo...

cllsupport.org.uk/cll-sll/s...

May you only need to add to your tracking spreadsheet twice a year or less for a long, long time...

Neil

[Trace25 in reply to AussieNeil]

Thank you very much xx also i cant work out how to keep my posts within this community, can you help?

[AussieNeil Partner Administrator in reply to Trace25]

It's covered in this pinned post, which has many more tips about maintaining your security and privacy while browsing the Internet: healthunlocked.com/cllsuppo...

Specifically, this section of the site Help pages (available by selecting your avatar image to the top right and then '? Help', covers what you need to know:

support.healthunlocked.com/...

You can edit any of your posts and replies at any time by selecting the 'v' below them and then selecting 'Edit'. Try editing this post now and let me know via a reply if you need help.

Neil

[lankisterguy Volunteer]

Here is an introduction/ overview of CLL and common terms- very easy to read and understand

bloodwise.org.uk/info-suppo...

Or something similar as a white board animation/spoken dialogue:

healthunlocked.com/cllsuppo...

If you want to learn in more depth, and you enjoy reading text online, this site has an more comprehensive learning course that can also bring you up to speed on the CLL specific discoveries learned over the last few years

cllsociety.org/cll-101/

If you do better with explanatory videos Start here:

patientpower.info/chronic-l...

Patient Power is a for-profit patient education website offers instructive videos and more on many health topics including CLL.

Among those videos is my favorite "explainer" of lab tests & results - Dr. Susan LeClair

patientpower.info/series/as...

here is a list of links to other resources:

cllsociety.org/cll-links/

Len

[Jacksc06]

Hello Trace. Welcome to the family, THE place for support & advice. Best wishes.

[cityslickers]

My Dr seems to most concerned about blood serum viscosity. 1 1/2 years into watch & wait., is at 3.4. High but I am symptom free

[MsLockYourPosts Passed Volunteer in reply to cityslickers]

Make sure you have a good opthamologist who is aware of the possible effects CLL can have on your eyes. Viscosity changes can ( not necessarily will) affect vision.