FCR: I’ll avoid FCR at all. Dangerous and tricky... - CLL Support

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FCR

Rccfrc00 profile image
9 Replies

I’ll avoid FCR at all. Dangerous and tricky. Increase the probability of AL occurrence as well as second neoplasm and Richter transformation in the long run. You have to be "fit patient” to receive FCR, IGHV mutated and without tp53 mutation or 17p deletion. Find a responsible doctor with a robust experience in biological drug who can profile exactly the biology of your cell clone and suggest the best way to proceed.

I wish you all the best

Federico

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Rccfrc00
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AussieNeil profile image
AussieNeilPartnerAdministrator

Hi Federico,

I'm not sure if this post was meant to be in reply to someone else's post? While you are correct about the risks associated with FCR (with the possible exception of Richter's Transformation), all CLL treatment drugs come with some risk, which is why it is important as you noted, to find a specialist "who can profile exactly the biology of your cell clone and suggest the best way to proceed". Hence today's post from Dr Koffman: healthunlocked.com/cllsuppo...

Please do bear in mind however, that many of our community don't have access in their country to this kind of prognostic testing. It's not readily available in Australia, other than 17p deletion checks via FISH testing and even if it is available, it doesn't change the recommended treatment options in most countries, including the UK, Canada and Australia. What's the situation in Italy?

Neil

JigFettler profile image
JigFettlerVolunteer

Greetings Federico! Welcome.

I see you have been part of our community for nearly 3 years, mostly quiet, which is fine.

Please feel free to share with us your situation, and what opportunities are available to you in Italy!

Take care.

Jig (UK)

Rccfrc00 profile image
Rccfrc00 in reply toJigFettler

Hi Jig

I prefer to intervene only when there is need and for arguments of which I have direct knowledge . FCR is a tricky Topic.

I had my diagnosis in 2017, one of the best Cll doctors In Italy prescribed me FCR (due I was and probably still I am fit) . I denied the cure . I’m today in W&W without particular issues.

I’m tri 12/ IGHV mutated, tp 53 negative, no 17 deletion, notch negative and so on.

I’m wondering what would be happened To me if I had been treated by FCR! A disaster.

Nowadays we have a lot of wonderful biological drugs so may be it is the time to rethink FCR employ in Cll patients even if fit and with good markers.

Nevertheless I am an ophthalmologist not haematologist. Therefore I always advice to consult more than a doctor when therapy is needed .

Best Regards

Federico

GMa27 profile image
GMa27

I am grateful for FCR. Reached remission in 3 months. No side effects. So far 2 years in remission. Had 3 expert opinions. All agreed it was my best option . I had the perfect markers and age.

It is definitely not for everyone.

keepfit123 profile image
keepfit123

At the point of treatment 7 years ago I was 84% Trisomy 12, 22% Deleted Tp53 , and low CD 38 ( probably IGHV mutated). I was treated with half dose F and C and normal dose Rituximab. According to the theory this was the wrong treatment but I achieved 7 years remission and still counting. What would have been the alternative 'correct' treatment at that time? I did have a few ups and downs but I am really grateful .

Rccfrc00 profile image
Rccfrc00 in reply tokeepfit123

At that time no one

very profile image
very

FCR, my husbands life saver,5yrs in remission.

Jenny uk

lilica955 profile image
lilica955

Sunt in tratament cu Leukeran de 4 luni

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

“I have been treated with leukeran for 4 months.”

How are you doing??

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