Information

[BlueGillfisherman]

I was diagnosed wit CLL about three years ago and the Doc I go to is great. He explained everything about my condition at the time and all the Fish results. However it was so much information at once that I could not wrap my mind around it. I know there are different things that effect the outcome but I can not begin to remember which all categories I fit into. Does anyone know of a chart that I can take to the Doc to ask him

am i ?

am I ?

thanks for any help and have a very blessed day

james

[Cllcanada Top Poster CURE Hero]

I'm I...

13q deleted, Trisomy12, FISH normal, 11q deleted, 17p deleted?

I'm I...

IGHV mutated or unmutated?

I'm I...

TP53 mutated, or non functioning?

About sums it up...

~chris

[Hidden in reply to Cllcanada]

Also

Am I? CD38 and/or ZAP70 positive or negative.

[Cllcanada Top Poster CURE Hero in reply to Hidden]

True ...but they are just surrogates for IGHV mutation...

[Hidden in reply to Cllcanada]

Yes but from what I can see that is the "normal" test to determine IGHV mutation, expression of those markers...not an actual IGHV test itself. I planned on asking my hematologist about that this month, if there is a specific test. I admit to being lax in the IGHV area, I was not even aware of the significance until months after I was diagnosed and so didn't much research it back then.

Scott

[Cllcanada Top Poster CURE Hero in reply to Hidden]

IGHV mutation relivance is more important than a few years ago... Janssen is funding the direct test in Canada for frontline patients going to treatment... since its required for governent funding of Imbruvica (ibrutinib), firstline.

Surrogates have been used for 15 years, but ZAP70 can be a problem... lab handling and transport etc. is the issue... CD38 can change over time, so its not really ideal either.

~chris

[lankisterguy Volunteer]

Also James,

Set up your smart phone to record the entire exam & discussion with one touch of the screen and then ask the Dr. to OK recording.

That way you can look up strange words and concepts for days, weeks months afterwards.

It may feel like studying for a final exam, but here are some links to help you prepare.

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

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

Are you NEW to CLL? Struggling with all the vocabulary, acronyms and numbers? Check out the CLL Toolkit for the following:

•Abbreviations and Acronyms cllsociety.org/toolbox/abbr...

•CLL Glossary cllsociety.org/toolbox/cll-...

•Normal Lab Values (USA units) cllsociety.org/toolbox/norm...

and a more advanced explanation of blood components:

cancerandiblog.wordpress.co...

blood cancers:

cancerandiblog.wordpress.co...

cancerandiblog.wordpress.co...

cancerandiblog.wordpress.co...

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

healthunlocked.com/cllsuppo...

Len

[Hidden]

This is a post from another user earlier today. It has good information, some of which might be overwhelming but it was worth looking at.

healthunlocked.com/cllsuppo...

Scott