What’s next?: I was diagnosed, in December of... - CLL Support

CLL Support

23,337 members40,044 posts

What’s next?

Pokerguy profile image
1 Reply

I was diagnosed, in December of 2018, with CLL and placed on W&W. Less than a year later I started FCR. After completing FCR my blood counts rose steadily until I reached stage 4 which led to two years of Venclexta (400mg daily) treatments. Throughout all treatments I’ve had monthly bloodwork, yearly PET scans and 3 MRD test using Flow Cytometry.

After year one of Venclexta, my Lymphocytes were at 12.9% with a MRD of 2.5%. Test showed abnormal expressions as follows: CD5 mod, CD19 mod, CD20 dim, CD22 dim, CD43 mod, CD79b dim and CD81 dim.

After two years on Venclexta, this past MRD showed 20% Lymphocytes and a MRD of 2.81%. Test showed abnormal expressions as follows: CD5, CD19, CD20 dim, CD22 dim, CD43, CD79b dim and CD81 dim.

It appears the disease is progressing despite treatment. Can anyone provide commentary about results and in particular, what treatments may lie ahead?

Any assistance would be valuable.

Stay healthy!

Written by
Pokerguy profile image
Pokerguy
To view profiles and participate in discussions please or .
Read more about...
1 Reply
Snakeoil profile image
Snakeoil

I would assume a second generation BTK inhibitor (e.g. Acalabrutinib) is being considered. And there are many clinical trials for RR patients so that remains an option too.

You didn’t mention FISH test, so can we assume those are not done yet?

Not what you're looking for?

You may also like...

Anti Body Test Result

I wonder if anyone can gave me an answer as to this diagnosis report. I got this report from an...
Kmegood profile image

flow cytometry is showing about 74% CLL involvement.

Is it likely that treatment might be needed in the near future? Husband is trisomy 12, TP53...

Distressed

Hi I was diagnosed earlier this week with CLL. The hematologist stressed that my CLL is slow...
Ned1 profile image

Seeking advice for treatment of CLL

Hi all A close family member has been diagnosed with CLL (chronic lymphocytic leukemia). She is a...

Relapse Worries? Help, Please!

Hi everyone, I started treatment (V + O) in January 2020; a year later, I was done, and had a flow...
DRM18 profile image

Moderation team

See all
AussieNeil profile image
AussieNeilAdministrator
Newdawn profile image
NewdawnAdministrator
CLLerinOz profile image
CLLerinOzAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.