CLL Support Association
9,322 members14,703 posts

Unmutated Newbie

Hello, all ~

First off, thanks to everyone for sharing information and personal experiences with CLL!

I was diagnosed in March of this year, am stage 0, normal karyotype, just barely over the cutoff between mutated/unmutated. My CLL doc considers me intermediate risk due to being unmutated (and positive for the usual associated wonky blood stuff). I'm very strong physically (been a yoga instructor since 1979, always been a clean eater, overall healthy lifestyle) ~ as such, my doc thinks it's likely I may avoid treatment for 10 years!

Even with things being in an early stage, my concern is my unmutated status ~ I'm pretty young to have CLL (57), so even if I'm able to hold off treatment for 10 years, I'll still be a pretty young CLL'er at 67, yes?

So, here's my question ~ does anyone know of someone with unmutated CLL who never needed treatment?

Thanks in advance for your input!

Blessings,

yazbe

9 Replies
oldestnewest

Generally speaking younger patients and unmutated status indicates a shorter time to first treatment.

Here is a study from the Mayo... they use age 55 as the tipping point for younger patients

haematologica.org/content/9...

I was diagnosed at 52 and had 14 years before treatment..no idea of my mutation status, it wasn't a big concern in the last century...😜 Dr. Hamblin et al. had not yet discouvered it...

~chris

4 likes
Reply

Thanks, Chris, for your response and for the article ~ best wishes!

Reply

Hi yazbe, one of the problems as Chris has alluded to, is many of us this side of the 'Pond' simply don't know our mutational status. Cytogenetic testing like FISH isn't routinely done here until treatment is due and at the moment my haematologist isn't able to tell me my mutational status.

You are relatively young in CLL terms and sound fit and at a very early stage so hope the odds fall firmly in your favour.

Best wishes,

Newdawn

2 likes
Reply

Thank you, Newdawn ~ good vibes your way :)

1 like
Reply

I am unmutated, diagnosed in early 2011 @ 57. Went into treatment late 2015. I had to ask for the mutation test to be done when it was clear treatment was soon. Specialists want to know it so they can guide you to the best available treatment. My previous Onc didn't think it was necessary, though he was steering me towards FCR. Not a good choice for us unmutated cllers. Hoping you get 10 or more years before needing treatment. The advances should be huge in a decade or so!

2 likes
Reply

Thanks for your response ~ wishing you well!

Reply

Your case sounds similar to my husband's. Diagnosed 2011. Still watch and wait but we've heard a few times this year treatment will likely be soon. Then his ALC or platelet counts improve a bit. I knew he was Trisomy 12, Zap70, at diagnosis but just learned this year that he is also IGHV-unmutated. Your comment that x treatment isn't good for this group caught my attention. Can you elaborate on what you've learned regarding IGHV-unmutated and best treatment options?

Reply

I’ve been told that the outcome for unmutated patients isn’t as good on FCR as it is for mutated. I finally ended up in the hands of Dr Jeff Sharman, a CLL specialist in Oregon. In my initial consult with him, as I was describing the treatment options that were given to me, he curled into a fetal position (haha). With all the new treatment options available to us, isn’t better to tailor the treatment to the patient’s genetic makeup? My recommendation is that if/when it is evident treatment is nearing that your husband consults with a CLL specialist. I’m glad I did the extra homework!

1 like
Reply

Thanks. And absolutely! I know he is in very good hands but I also know that docs are humans. Husband is overly trusting and I run the other way. I want to understand, participate as part of team but it's tricky as husband goes other way.

Reply

You may also like...