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?😬
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
Thank you Neil. I will. Check the link.
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
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
He is from Las Vegas ....it is better to say craps or roulette.
I am living in Hungary 
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. 🙏💕
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
Hi Jig, may I ask how old are u, and how long have you been w&w?
Hi!
62. I am post FCR, so on on W&W #2.
Feeling good! Very good!
Jig
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 ! 💕
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
How old were you at dx?
How long ago did u have FCR?
Yes here's to our long long remissions! 💕
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
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! 💕
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.
Yes full remission. Bone marrow was clear, blood work good.
My 2 experts like to do 3 cycles then repeat all tests including BMB. 🙏
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
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. 🙏💕🙏
Gosh.... I spent months with neut counts of 0.3 and lowest lymph count 0.0! 🤞
When did u get neutropenic, first round, last round?
Round 1 FCR! Jig
Oh bummer! Ok lots are from the start so hopefully each week gets better! 🙏🙏
Treatment option with del 17 positive but IGHV mutated
So what is important to know ,,,blood test markers and other
Unmutated Newbie
I am trying to find out if I am unmutated or mutated. My results show IgM positive and IgG negative. What's the difference?
day 1 fcr ,,but un-mutated
