Mutated vs. Unmutated: Hi Guys, I always... - CLL Support

CLL Support

22,368 members β€’ 38,475 posts

Mutated vs. Unmutated

tomster profile image
tomster
β€’24 Replies

Hi Guys,

I always emphasize that I am rookie here. I am just learning what does CLL mean. Fortunately your support helps a lot to understand what is it exactly. I am 13q deleted and mutated. I have already tried to find some explanation what does mutated mean and what is the benefit of it, but unfortunately I did not find any accurate answers yet which could help for me to understand why is mutated good for me...🀨

Could you help me?😬

Written by
tomster profile image
tomster
To view profiles and participate in discussions please or .
24 Replies
β€’
AussieNeil profile image
AussieNeilAdministrator

Lots of related posts for you to explore of which this one matches with your very desirable prognostic markers: healthunlocked.com/cllsuppo...

In short, the phrase "mutated" in CLL specifically refers to whether or not the IgHV gene on chromosome 14, (which specifies how the B Cell Receptor is made), has gone through a hypermutation phase. If it has, the IgHV DNA rearrangement in the CLL differs from the germline you inherited from your parents. That is interpreted to mean that your CLL began in a more mature stage of the originating B-cell and correlates with a longer time to first treatment, longer remissions from chemo treatments, and if treated with FCR, about a 60% chance of a very, very long remission lasting 10 to 15 years and counting.

Neil

tomster profile image
tomster in reply to AussieNeil

Thank you Neil. I will. Check the link.

JigFettler profile image
JigFettlerVolunteer in reply to AussieNeil

Yup! Nice, thanks Neil.

As with any cancer, the more like the mature parent cell the cancer is the better. Poor differentiation has less good outcomes.

Yet in CLL other levels of complexity prevail. Never lose hope.

Jig

Newdawn profile image
NewdawnAdministrator

Hi tomster, that’s an excellent technical explanation from Neil and in time you’ll come to appreciate just how favourable your prognostic indicators are.

In the CLL raffle of life you scored first prize! 😊

Newdawn

LovecuresCLL profile image
LovecuresCLL in reply to Newdawn

He is from Las Vegas ....it is better to say craps or roulette.

Newdawn profile image
NewdawnAdministrator in reply to LovecuresCLL

Craps has a very different meaning to me! πŸ˜‰

Newdawn

tomster profile image
tomster in reply to LovecuresCLL

I am living in Hungary ;-)

GMa27 profile image
GMa27

I am grateful to be 13q mutated! Had 12 years on W&W! Felt great. Then had FCR last summer. Doing well and hopefully a long long remission. πŸ™πŸ’•

JigFettler profile image
JigFettlerVolunteer in reply to GMa27

Me too, 13q, mutated, FCR last summer, doing well...

How are your neutrophils BTW? Mine are low ish... lymphs stuck on 0.3!

Keep strong.

Jig

tomster profile image
tomster in reply to JigFettler

Hi Jig, may I ask how old are u, and how long have you been w&w?

JigFettler profile image
JigFettlerVolunteer in reply to tomster

Hi!

62. I am post FCR, so on on W&W #2.

Feeling good! Very good!

Jig

GMa27 profile image
GMa27 in reply to JigFettler

I am traveling now. Will check my April blood work end of week when back home. Can't remember neutrophils. I just know my WBC went from 2.5 to 3.8 which was good to see.

I am feeling great. This time last year I had to cancel my family trip to start FCR. What a difference a year makes! Feeling very blessed. Hope you continue to do well ! πŸ’•

noeagaman profile image
noeagaman in reply to GMa27

I guess that my 13q mutated didn't help me. I needed treatment after 2 years of W&W. Oh well, we can't have it all I guess. I just hope that I get a decent remission length from the FCR that I had.

Chris

GMa27 profile image
GMa27 in reply to noeagaman

How old were you at dx?

How long ago did u have FCR?

Yes here's to our long long remissions! πŸ’•

noeagaman profile image
noeagaman in reply to GMa27

I was 55 at diagnosis. I had four rounds of FCR and then found out that I was allergic to one of the meds. Spent a week in the hosital and then about two months going in several times a week for platelets, blood and other stuff. My doctor said what happened to me was very rare. Oh well, I had to be special...:)

Chris

GMa27 profile image
GMa27 in reply to noeagaman

Oh boy!

I was 52 at dx. My dad was 62 @ dx and never needed treatment! Lived to 94!

I only needed 3 rounds. I was lucky! πŸ’•

noeagaman profile image
noeagaman in reply to GMa27

That's great that your dad never needed treatment. He was one of the lucky ones...:)

Did you get a full remission from three rounds? My doctor said that I was in remission with incomplete recovery after the four rounds. Now I'm on IVIG because my blood counts came up a little but then stopped.

GMa27 profile image
GMa27 in reply to noeagaman

Yes full remission. Bone marrow was clear, blood work good.

My 2 experts like to do 3 cycles then repeat all tests including BMB. πŸ™

JigFettler profile image
JigFettlerVolunteer in reply to GMa27

It is interesting, curious, and a little disconcerting that there remains so much variation in FCR treatments. I wanted to stop at 4 cycles, was urged to do all 6. But then I was tolerating the treatment well...

My biologicals being favourable my advisors clearly keen for max obliteration of my CLL.

9 months post FCR I am still neutropenic (1.5) and lymphopenic (0.3).

Best wishes

Jig

GMa27 profile image
GMa27 in reply to JigFettler

I know...so many different recommendations for FCR. I guess some experts figure if ur marrow is clear, what is the chemo going to fight!? And then I guess there is risk of becoming neutropenic. My WBC never went below 2.5

Your numbers should improve soon. Can take up to a year post chemo. πŸ™πŸ’•πŸ™

JigFettler profile image
JigFettlerVolunteer in reply to GMa27

Gosh.... I spent months with neut counts of 0.3 and lowest lymph count 0.0! 🀞

GMa27 profile image
GMa27 in reply to JigFettler

When did u get neutropenic, first round, last round?

JigFettler profile image
JigFettlerVolunteer in reply to GMa27

Round 1 FCR! Jig

GMa27 profile image
GMa27 in reply to JigFettler

Oh bummer! Ok lots are from the start so hopefully each week gets better! πŸ™πŸ™

You may also like...

Need help reading test results - mutated vs unmutated

have just 13q deletion no signs of other deletions I am struggling to figure out if I am mutated...

questions about mutated / unmutated

simple explanation about 13q and mutated versus unmutated. I am 13q deleted and mutated. thanks

Unmutated

being unmutated or is it all doom and gloom? Please help..

FCR for IGHV unmutated

17p deletion. Any medical papers would be of great interest. Thanks for your support. I'm learning...

IGHV unmutated and trisomy 12

predicting 3-5 years. Does anyone have experience in these mutations and a faster progressing CLL?...