Another 12 weeks with CLL : After nine months on... - CLL Support

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Another 12 weeks with CLL

Corin850 profile image
13 Replies

After nine months on venetoclax down to seeing prof every 12 weeks rather than 4. Look at this photo! I say with CLL. Actually I'm Mrd but life ain't straight forward.

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Corin850
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13 Replies
UK-Sparky profile image
UK-Sparky

What is Mrd? Glad things are on the up for you Corin850

Corin850 profile image
Corin850 in reply toUK-Sparky

Minimum residual disease

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toCorin850

MRD is a measurable remission... less than 1 CLL cell in 10,000 leukocytes.

Generally patients who achieve this have longest progression free survival...

~chris

Justasheet1 profile image
Justasheet1

Why so many pills? Is that a 3 months supply? Congrats 🎉

I know you've been put through the ringer with this stinking cancer.

Enjoy the MRD status. 🍷

Jeff

Corin850 profile image
Corin850 in reply toJustasheet1

Yes! It's a lot eh?!

Foggymind profile image
Foggymind

Hi Corin850,

Firstly, congratulations on your excellent results.

I believe the reason for so many pills after MRD (Minimal or Residual Disease) is explained in this extract below, it comes from the document “Remission, Responses, and Survival Terms”. Sadly I can’t find the link but had kept the document on my PC. Hope this is of some help.

Why treatment is sometimes continued when no disease is detected?

Ultimately, the duration of the response to treatment is the best measure of how successful treatment has been. Duration of response is how long you have no clinical signs of disease.

So the full course of treatment is many times given even after there's no sign of disease with imaging with the goal of eliminating as many abnormal cells as possible (the assumed small amounts of residual disease) so that the duration of the response will be as long as possible ... and (dare we say it) so you have a better potential to cure the disease, which is the complete eradication of the disease.

Take care and best wishes for a healthy future.

Kevin – Essex, UK

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toFoggymind

I have this page bookmarked 😜

This is broadly all right for lymphomas, but CLL has a few peculiarities... best to follow the iwCLL guidelines, which hopefully will be revised soon...

lymphomation.org/about-remi...

iwCLL

bloodjournal.org/content/bl...

colincll10 profile image
colincll10 in reply toFoggymind

when I saw mrd I didntknow what it was either , so minimum residual seem good and thanks f rthe clarity above --congrats to the original mrd man then that looks very good for long terms for you , brilliant -just hope we can get this drug in Scotland as well in due course

ballyhoo profile image
ballyhoo

Glad that the treatment is working well for you it gives all of us hope. Best wishes.

sandybeaches profile image
sandybeaches

I'm so very glad for you that you have had such a terrific response to the therapy. How much longer will you have to take the Venetoclax and all the other medications?

Sending my very best,

Sandy Beaches

Corin850 profile image
Corin850 in reply tosandybeaches

Until they stop working eg liver no good

Debinoz profile image
Debinoz

Congrats Corin! Hope that means you're MRD negative. I'm on 3 monthly's now too which makes such a difference.

Corin850 profile image
Corin850 in reply toDebinoz

August 0.08 % in bone marrow. So positive. However might be negative next check.

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