Help for a newbie please...

[Normsky]

Hi I keep hearing (at the conference) and seeing discussion (on here) about the ''type of CLL'' whether I have mutated or unmutated, can anyone help explain the difference and how I find out which I am? (In easy terms please?)

[Newdawn Administrator]

Hi Normsky, to learn of the mutational status you keep hearing about, you’d need a IgHV hypermutation test (which is different from the FISH test which tells you which chromosomal deletions you have). It’s hard to get in some countries and not routinely offered in the U.K. as a separate test.

This link from Dr. Sharman will help you to understand the difference and significance between mutated and unmutated in CLL. It also explains how this information can sometimes be taken (with about 70% accuracy) from the Flow Cytometry test you will have had to diagnose you.

Your chromosomal profile can change over time but your IgHV mutational status remains the same. Hope that helps a little.

cll-nhl.com/2014/04/mutated...

Best wishes,

Newdawn

[Normsky in reply to Newdawn]

Thank you, that makes it clearer and helps e ask questions at my consultant appt next week.... I think he will be gobsmacked when I arrive armed with questions !!

[Newdawn Administrator in reply to Normsky]

Ah but you’ve been to a CLLSA Conference now Normsky, you’re on your way to being an involved, informed patient! 😉

Good luck with your appointment.

Newdawn

[Satsuma12 in reply to Normsky]

Hi Normsky. Yes I attended the London Conference yesterday and it was my first conference since diagnosis last year. I found it very beneficial and the speakers were very informative.

It was so well organised and Marc and everyone were very welcoming.

As regards your mutational status, my understanding is that this is done prior to treatment.

I asked my Consultant about this last June and he said it would be done prior to my treatment which I think is looming in the not too distance future.

Hope that helps.

[Normsky in reply to Satsuma12]

Thank you for your help x

[lankisterguy Volunteer]

Here is a well written but dated explanation of prognostic indicators, note that the survival curves are obsolete- data from long before the modern targeted therapies were approved. This long, illustrative and often humorous article from Chaya Venkat of CLL Topics includes an excellent explanation of mutated v unmutated IgVH and is in a form many will find easier to understand

updates.clltopics.org/3256-...

Len

[Hoffy]

Although it sounds counterintuitive the short answer is mutated is better then unmutated.

The mutated cell is more settled down has a job and not as wild as the young teen unmutated cell....

The next important classification is genetic status of your CLL. 17p deleted is the worst, 11q second worst. 13q deleted is the best. Trisomy 12-ish usually not too bad either.

With this said things can very all over the map depending how your CLL plays out.

Keep learning and studying. The CLL society website is very helpful as well.

Non-chemo targeted combination therapy seem to be doing the best. I am on a Imbruvica plus Venetoclax combo in a clinical trial.

Get a second opinion from a regional center with a CLL expert before starting treatment.

Be well,

Hoffy.

[Normsky in reply to Hoffy]

That’s really helpful thank you, my current consultant is very unhelpful and I am going to ask for a referral to another clinic so hopefully I will get more information to work with x

[Laceybaby]

Hoffy's answer is good, I think. I got tested recently at OSU, because my local oncologist didn't seem interested in the finer points of a diagnosis. Happily, I turned out to be mutated. OSU is a regional center with CLL specialists available. Great place. Look into where your closest regional CLL specialty center is. I had to drive 200 miles one way for my appointment with a new specialist, but it was worth it! She's on my treatment team now, whenever that time arrives.

[Normsky in reply to Laceybaby]

Wow sounds good I’m certainly on a mission to get better informed care now that I know it is possible and out there somewhere 😀

[BallparkChaser]

Hi Normsky - keep looking until you find a consultant that you are satisfied with their knowledge, interest in you, and their connections to new technologies and trials. The more you know and the more questions you can ask will help you to know when you have found the right Dr. Good luck!

Tim