MRD negative: After 2 years on Venetoclax, I am... - CLL Support

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MRD negative

Racing1961 profile image
Racing1961
β€’27 Replies

After 2 years on Venetoclax, I am now MRD negative. Such fantastic news. The Royal Marsden in London have been absolutely brilliant and can’t thank them enough 😊

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Racing1961
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27 Replies
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Ghounds profile image
Ghounds

Wonderful news, wishing you a long and healthy remission.

Poodle2 profile image
Poodle2

Wonderful news!πŸŽ‰

annmcgowan profile image
annmcgowan

Congratulations long may it last.

Ann

Skyshark profile image
Skyshark

Not just uMRD but uMRD5! Really very good.

Steffi50 profile image
Steffi50

Hi Racing 1961 really good to hear this. In fact more than good - wonderful! Just quick question re treatment as I am also at the Marsden, why 2 years on V? I am on 12 mths (6 mths in) V&O. I did not know that you could just take a single drug such as V. What dosage did you take for the 2 years.

Racing1961 profile image
Racing1961β€’ in reply toSteffi50

Hi Steffi50, is this your first treatment? I had a very bad experience with FCR that nearly killed me back in 2018. I only had one round and it was stopped. I started V+O in 2021 but only had 1 O infusion as I didn’t do well with it. I think that’s why I was kept on V for longer. I took 400mg for all 2 years.

Steffi50 profile image
Steffi50β€’ in reply toRacing1961

Oh that explains it. Yes, first treatment. Luckily I hung on W&W long enough to avoid FCR. I always said I would never want to take it. I think O is very harsh. I have one to go(but all treatment stopped last week as my neutrophils have tanked or as the Marsden puts it LL) but hopefully will get going again next week. Fab about you though. Gives me hope

Shefflass profile image
Shefflassβ€’ in reply toSteffi50

I am also on 2 years Venetoclax but on the V+Rituxinab protocol. I understand V+O is given as first line treatment but V+R is given if you've had other treatments in the past.

Congratulations Racing1961. What wonderful news!

Milla15 profile image
Milla15

Yay! πŸŽ‰πŸŽˆπŸŽ‡πŸ₯‡

jillybird13 profile image
jillybird13

fantastic news, so pleased for you . It’s a great feeling isn’t it . I got my MRD last week πŸ‘

spi3 profile image
spi3

Totally awesome news and blessed! Congratulations

LeoPa profile image
LeoPa

Congrats, must be music to your ears! No evidence of CLL cells 😁🀞

MistyMountainHop profile image
MistyMountainHop

Bless youπŸ˜ƒ

CycleWonder profile image
CycleWonder

This is the best of the best of the best news you can get! Congratulations!πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰

skipro profile image
skipro

congratulations!!!!

Were you on Ven alone, or in combination with Obin or Ritux or other?

Also, Were you relapsed beforehand? I hear the protocol is 1 year for Tx naive and 2 years for relapseds/

I am so happy for you and hope this is a lasting response!!!!

Racing1961 profile image
Racing1961β€’ in reply toskipro

If you look back at my previous posts you will see what an awful time I had with FCR. Managed to avoid more treatment for 2 years. Was supposed to have V+O but reacted badly to the O so ended up having 2 years of just the V at 400mg a day.

vman82 profile image
vman82

AMAZING NEWS !!! wishing you an infinite remission !

garyherm profile image
garyherm

great news

DinosaurDad profile image
DinosaurDad

Congratulations! Welcome to the "I was treated with V and am now MRD negative" club!

cyclist123 profile image
cyclist123

Congrats to you. Thx for sharing.

Chi-town_Girl profile image
Chi-town_Girl

Fantastic news!!!! Celebration time for you! :)

Fran57 profile image
Fran57

Amazing! πŸŽ‰ πŸ₯³

Fran πŸ˜‰

PulsedTherapy profile image
PulsedTherapy

Venetoclax is really an amazing drug. Congratulations. What was your TP53 status?

Racing1961 profile image
Racing1961β€’ in reply toPulsedTherapy

There is no evidence of TP53 mutation or deletion 😊

Skyshark profile image
Skysharkβ€’ in reply toRacing1961

Was VenR on a trial or did you have to ask for the MRD test or was it Royal Marsden SOP?

Racing1961 profile image
Racing1961β€’ in reply toSkyshark

No, it wasn’t on a trial and I didn’t have to ask for the test. I was treated at The Royal Marsden.

Pearlpink profile image
Pearlpink

fantastic news!!πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰

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