Simply Curious

[Oceanbly]

I know we can go for years on W&W. I'm wondering what the longest time frame someone has gone once starting treatments? Does anyone know? I'm just curious.....

[littledab]

Hi

I was about three years! Been on treatment for almost a year!!

Best of luck!

[AussieNeil Partner Administrator]

About 55% of those treated with FCR who are IGHV mutated are enjoying indefinite remissions. Survival curves show that if you have this prognostic marker and make it to 7 years without your remission ending after FCR treatment, you are effectively cured. No relapses have been reported out to 12 years in official follow-up reporting, with some of those who were in early FCR trials approaching 20 year remissions. Interestingly, the same phenomena is not seen in IGHV mutated folk treated with BR, but it is hoped that very long remissions for those with favourable prognostic markers will also be seen in those treated with combination non-chemo treatments, such as Ibrutinib/Acalabrutinib or other BTKi with Venetoclax, or Venetoclax with Obinutuzumab.

We also have early Ibrutinib trial patients approaching 10 year long remissions while on Ibrutinib maintenance therapy.

Neil

[Graham2222 in reply to AussieNeil]

Very interesting and encouraging Neil, thank you.

[Pinno in reply to AussieNeil]

Hi Neil, very interesting stats. I’ve been on W and W for 7 years now, (diagnosed at 48) and luckily, at the moment, I’m a slow burner. On the twist side however I’m in the unmutated camp. I appreciate meds and figures are changing all the time but are there any relevant stats you can share for the unmutated fraternity?

Cheers Barry

[AussieNeil Partner Administrator in reply to Pinno]

With chemoimmunotherapy, remissions didn't last that long, but that changed with the newer, non chemo treatments, for which we still await time to gain remission lengths.

[Oceanbly in reply to AussieNeil]

Thank you Neil! Truly encouraging!!!

[livinglifewell]

I went with watch & wait for about four years, but my girlfriend's ex has been W&W for over forty years, his disease has never progressed.

[Sushibruno in reply to livinglifewell]

Wow!!

[gardening-girl]

Oceanbly, I had my first treatment for CLL in 1997. That is 23+ years ago! There are others with whom I connected that long ago who are still going strong!

gardening-girl

[Oceanbly in reply to gardening-girl]

Wonderful news!! xo

[GMa27]

I was on W&W 12 years. 27 months remission. My Dad had CLL and was on W&W 30 years and never needed treatment!

[Oceanbly in reply to GMa27]

Excellent!!! xo

[goldstream]

Everyone is different. I have been on W+W for 11.5 years, so slow moving.

[very]

My husband went 16 yrs W&W and he is 4yrs post-FCR

jenny uk.

[morepork]

20 years W&W even with 17p deletion (no lymph nodes), before Ibrutinib. 😊

[Laura3mini]

All soooo encouraging...