Undetectable after 6 months: I received six... - CLL Support

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Undetectable after 6 months

Golflover1954 profile image
17 Replies

I received six months of obinutuzumab And 400 mg Venetoclax. My oncologist did a bone marrow biopsy and a CT scan. The results of the CT scan were all normal lymph nodes and the results of the bone marrow biopsy were clear of any disease. I stopped Venetoclax and am Being monitored with a test called clonoseq. I’m excited.

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Golflover1954 profile image
Golflover1954
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17 Replies
MistyMountainHop profile image
MistyMountainHop

Great news! Go directly to the nineteenth hole🍻🥂

lankisterguy profile image
lankisterguyAdministratorVolunteer

Hi Golflover,

Congratulations, you just hit the hole in one for CLL patients. Have that score card framed and displayed.

The Clonoseq test can often detect 1 CLL cell out of 1 million, so it may be several years until your CLL returns, hopefully many years.

Len

Hilomom profile image
Hilomom

This is very comforting, reassuring news!

Dragonfly2007 profile image
Dragonfly2007

That's fantastic news 🎉 not surprised you are excited!

Stavrou1 profile image
Stavrou1

That's great news 🍾..

dmmck profile image
dmmck

Great news!!

stevesmith1964 profile image
stevesmith1964

Great news. Obinituzumab and Ibrutinib got me Stage 4 with 100% marrow infiltration to UMRD in 240 days. I have been on Acalabeutinib twice daily since, monthly bloods stable and 6 monthly unchained so still in Umrd.Keep safe.

CLLCalifornia-USA profile image
CLLCalifornia-USA

Congratulations. May your health and happiness continue so you can follow your dreams. Sally

KKwtx profile image
KKwtx

Wonderful news! Congrats!!

laurieq profile image
laurieq

Great news!!

xpetes profile image
xpetes

Congrats! What was the thinking behind stopping after 6 months though ? From what I understood even if you hit uMRD the treatment was supposed to be for 12 months. Please don't get me wrong, this is a great result, I'm more just curious since I didn't have the option to stop early and I was in the same situation as you.

Golflover1954 profile image
Golflover1954 in reply toxpetes

My oncologist and I came to this decision together. There was a short term study called Gaussian that was 6 -9 months. Of the 44% who reached undetectable over 70% remain so after 5 years. I will be tested every 3 months clonoseq dna test. If my levels move rapidly toward the need for treatment, I will resume.

xpetes profile image
xpetes in reply toGolflover1954

Thanks so much for that info! My local onc. really wasn't keen on doing mrd testing as he relies on symptoms and CBC results. But I see a specialist annually at a big cancer center and that's how I got the Mrd testing. He offered me to do it every 6 months but I think I'm going to just do it annually as long as my CBC stays stable and normal.

Good luck to you in the future!

Floxxy profile image
Floxxy

Fabulous x

AnneHill profile image
AnneHill

Thata lovely news. The monitoring is something I havent heard of. I hope you feel well, Anne uk

elm1 profile image
elm1

I’m currently taking o plus v. My bloodwork was normal after the first infusion. I feel great and never had any symptoms. I would like to test for mrd after I complete the treatment. I had no idea you could do it before. Thanks for that information

SUN5H1N3 profile image
SUN5H1N3

May I ask what your markers are? I just finished treatment and received a clear Bond marrow biopsy. I am 11q unmutated.

Thank you.

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