Unmutated

[JayPay]

Today I was told by my Onc that my IGHV was unmutated. The rest of my markers were normal, but the IGHV being unmutated isnt the only indicator but the disease, but it is a significant part of it. I am absolutely devastated, and I feel like I was diagnosed all over again. Mentally I was starting to get so much better. Are there any GOOD stories of being unmutated or is it all doom and gloom? Please help..

[cajunjeff]

Being unmutated was more of an issue in the chemo days because in general unmutated Cll doesn’t respond to chemo as well as mutated.

With drugs like Ibrutinib and venetoclax mutation status has taken on less meaning as most everyone starting on these new drugs responds to them.

oncotherapynetwork.com/leuk...

[johnl]

I'm unmutated and went 16.5 yrs before I needed treatment.

john

[JayPay in reply to johnl]

did you have any major symptoms?

[Sushibruno in reply to johnl]

Wow

[J_88 in reply to johnl]

That's crazy.

[buttermade in reply to johnl]

going 16 years without treatment is very encouraging to me.

[Canuck901]

Unmutated is ok it’s just not good with FCR ,

Better off with the oral therapies I believe

[louise66]

Hi

I asked my consultant to test my mutational status not long after diagnosis.

Like you I was devastated learning I was unmutated V1-69, it took me a long time to accept it.

I did 2.5 years from diagnosis to treatment and I did 5 rounds of FCR in 2013 which gave me 6.5 years in remission and feeling really well and enjoying life.

I am just coming out of remission now but I'm positive about future treatments.

Treatments are changing so much and hopefully what they suggest next will also give me a good remission.

Take care,

Louise

[buttermade in reply to louise66]

so good to hear such good reports!

[Shepherd777]

Ignore any articles by Dr. Google and disregard research articles written more than 2 or three years ago. The advent of Oral Novel agents like Imbruvica and Venetoclax are a real game changer for the unmutated CLL patients, even if you are 11Q or 17P deleted or TP 53.

[buttermade in reply to Shepherd777]

thanks for the info!

[Mldeterm]

As others have said, unmutated only factors into chemo response. No difference at all with the new agents which is the direction treatment is moving anyway. Fear not

[uihwki]

I was unmuated and went 5.5 years before starting treatment (no deletions). I've been on acalabrutinib for 18 months with phenomenal results. I FEEL GREAT with minimal side effects (minor infrequent headaches).

[buttermade in reply to uihwki]

so glad to hear you're doing well. Keep it up!

[mickimauser11]

I was Trisomy12 unmutated cancerfree since January2018 unmutated is Not so important With novel agents

[SueeB]

I was diagnosed in May 2009. I then went to Australia to check whether I was mutated or not as this test was unavailable in NZ. I am unmutated, which like you was devastating.

I had FCR in 2013 and have been in remission ever since. Life is good!

[Big_Dee]

Hello JayPay

Yes, great story follows; I am un-mutated which means you may have shorter time on W&W before possible treatment, but not always the case. My B-symptoms were not very bad, slight undetectable lymph node growth and night sweats. I am now almost one year post treatment and in full remission. I am but one of many who are also un-mutated on this forum. Blessings.

[Smakwater]

JayPay,

1. Diagnosed 2015 unmutated age 55 relatively fit.

2. W/W 39 months, progressed to severe fatigue, measurable nodes, and notable high WBC.

3. Begin Treatment Oct 2018 with Obinutuzumab two months.

4. Treated with Obinutuzumab and Venclexta combination 5 months.

5. Treated with venclexta monotherapy 4 months.

6. Bone marrow biopsy at 11 month Into Treatment revealed no CLL present.

7. Discontinue 15 month O+V Treatment Dec 2019.

8. Notable side affects - 7 months intermittent mild neutropenia.

9. Overall health & quality of life improved greatly Post Treatment.

10. Current CBC within acceptable ranges, and follow up BNB scheduled March 4, 2020.

Patients with Unmutated IGHV are showing very good responses on the new targeted therapies, and the dynamic in blood cancer research continues to show great promise.

I have had many good days.

Hope has substance.

JM

[Dredgen]

Unmutated as well- but diagnosed at 35 and finished FCR a year ago at 38. Team thought FCR was best since I was so young. Hoping for long remission and that pills keep advancing when it comes back!

[GrapeGrower1]

I've always been very healthy until my dx. Then they told me I was unmutated and I read all the outdated statistics and was disturbed also. Now, after all the new developments, I don't think we are much worse off than anyone else with CLL. So many treatment options. My advice Is to eat healthy, exercise, and always try to be positive. And if you find yourself down on any given day, start again the next. My doctor told me to go on living my life and that's what I'm doing. Enjoy every second of it.

Jay

[Lily_Pad_Master]

I mutated is my only marker. MRD negative on Acalabrutinib, Obinutuzumab, Venetoclax combo after six months. It’s a new day for those of us with this marker. Even those with worse markers are doing so much better on checkpoint inhibitors and immunotherapies.

[catnapcrew]

Unmutated and 17p del. progressed quickly - venetoclax and ibrutinib put me into remission 2 years ago. Still clear. As others have said these newer oral targeted therapies are a game changer - levelling up the playing field. Stay positive- there’s a lot more hope out there than a couple years back.