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kel555 profile image
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hi all is there any members who has had fcr who are unmutated had longer than 3 yrs remission just curious has one doctor says you can get remission up to 5 yrs plus and also which treatment would be best after fcr ,,thank you ,,kel

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kel555
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Canuck901 profile image
Canuck901

Everyone responds differently to treatment no CLL is the same but the combinations with venetoclax seem to have durable remissions as one cleans the blood 🩸 the venetoclax cleans the bone marrow and the synergies seem to give a durable remission and the CLL a knockout punch .

I am unmutated and had a 5 year remission with FR. I had BR and now am on Ibrutinib. Taking three pills a day is so much easier. I am able to enjoy life again on Ibrutinib. I have been fortunate not having any side effects. Good luck. Sally

bkoffman profile image
bkoffmanCLL CURE Hero

There are cases of very long remissions with FCR, more than 15 years. Most but not all were in patients with mutated IGHV, so a few unmutated patients also had durable remissions. Generally these days, we recommend using novel agents if possible in unmutated patients. After FCR, any chemo should be avoided, and the ultimate choice will depend on your markers and status when treatment is indicated. I would add that whatever is the best option today could very well be upstaged by a better option by the time your treatment is needed.

aloneifly profile image
aloneifly

I am unmutated and had fcr. I only lasted 2 years and those years were interspersed with multiple infections so in my book no remission at all!

I am now on Venetoclax + Ritiximab and already achieved MRD negative.

Though treatment currently halted mid cycle due to a secondary cancer.

So yes the novel drugs now used are a game changer - though of course everyone is different.

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