“MRD: What Should It Mean to Me?” Ever dreamed... - CLL Support

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“MRD: What Should It Mean to Me?” Ever dreamed of coming to a point where your CLL treatment could be safely stopped? View CLL Webinar.

bkoffman profile image
bkoffmanCLL CURE Hero
28 Replies

Instant replay! In case you missed it, here it is! CLL Society’s latest Webinar — “MRD: What Should It Mean to Me?” If you have ever dreamed of coming to a point where your CLL treatment could be paused or stopped (known as “limited duration”) please know that researchers such as Dr. Mato et al are focusing their attention on that very target. Testing for MRD (minimal or measurable residual disease) status, during or after treatment, may well become the new indicator determining when you can safely stop certain CLL treatments. In this August 14th CLL Society webinar, featured CLL expert Dr. Anthony Mato and moderator Dr. Brian Koffman addressed our viewers’ questions and brought us the latest information on MRD testing. At the CLL Society, it’s never too late! All CLL Society webinars are archived for your continued learning. Check out the recorded webinar here. cllsociety.org/2020/08/cll-...

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bkoffman
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28 Replies
Sushibruno profile image
Sushibruno

I know it's different for everyone, but I wish there was more data on how long people have gone on umrd negative I hope the future data will be the majority of people will stay there for years if not indefinite🙂. Thank you Brian.

Naka profile image
Naka in reply to Sushibruno

onclive.com/view/al-sawaf-h...

Sushibruno profile image
Sushibruno in reply to Naka

Thank you Naka.

Sushibruno profile image
Sushibruno

I forgot to add including those with bad markers.

bkoffman profile image
bkoffmanCLL CURE Hero in reply to Sushibruno

We have folks post allo- transplant and post CAR-T that are a decade or more out with no disease, which is starting to smell like a functional cure. Many of these folks had bad markers. Less long term data on ven based thx, but a few folks are 5 years out and doing well.

Sushibruno profile image
Sushibruno in reply to bkoffman

Thank you for responding to me Brian I think about this every day... this gives us all so much hope and I feel much better so thank you again and also I want thank Dr. Mato for the video.

bkoffman profile image
bkoffmanCLL CURE Hero in reply to Sushibruno

There is reason to be hopeful.

Sushibruno profile image
Sushibruno in reply to bkoffman

🙂thank you...

J_88 profile image
J_88 in reply to bkoffman

Venetoclax, Ibruitinib or FCR is not a functioning cure? or as good as allo - transplant and CAR-T?

bkoffman profile image
bkoffmanCLL CURE Hero in reply to J_88

Might be. FCR has the best data and very likely some folks are cured.

bennevisplace profile image
bennevisplace

Having missed the live webinar I was pleased to be able to watch the replay - thanks, very informative. The knowledge gained is sure to help with my next post treatment consultation.

According to Dr Mato MRD is less relevant to patients on Ibrutinib monotherapy, and I wanted to sound out the experts on something I just read of, a new technique that could help guide treatment decisions. I'll post separately soon, please look out for it.

bkoffman profile image
bkoffmanCLL CURE Hero in reply to bennevisplace

Look forward to it. Could you please email me or private message me so I don't miss it. Thanks Brian

Lakeviewg profile image
Lakeviewg

Thanks for letting us know the webinar was posted Brian.

The webinar was very informative, I learned a lot. Dr. Mayo's presentation was very informative and the Q&A really helped answer and clarify things. You did a great job with the questions. I was especially interested in MRD in relation to BTK inhibitors so that discussion was very helpful.

Thank again.

Mike

Ontheblock4m profile image
Ontheblock4m

My takeaway was if you have bad markers and are in MRD status while on V it is best NOT to stop therapy w V but continue on it indefinitely

Is this correct?

bkoffman profile image
bkoffmanCLL CURE Hero in reply to Ontheblock4m

Not sure what you mean by MRD status, bu I'd stop if uMRD and get more testing id MRD detectable.

Ontheblock4m profile image
Ontheblock4m in reply to bkoffman

Peripheral Blood I:10k negative; assuming BM 1:1 mil negative. Would you w 17p plus every other negative factor really stop V in light of Mureno study showing more rapid relapse in this group compared to non 17p group?

bkoffman profile image
bkoffmanCLL CURE Hero in reply to Ontheblock4m

Really don't know the answer. Stop ven and hope for a long glide and that ven will work again, or continue on ven and hope the CLL stays suppressed. Which course offers the best survival? An active area of research.

Ontheblock4m profile image
Ontheblock4m in reply to bkoffman

We r following the latter approach hoping for continued suppression until next In line therapy is better adjudicated. ? CAR-T, OXO etc

Stay well my friend

M

fell profile image
fell in reply to bkoffman

I’m 16 months out of an I/V 15 month fixed duration trial. I am MRD+ (about 3 cells in 10,000)

Labs are normal - hoping for a long remission 🙏

bkoffman profile image
bkoffmanCLL CURE Hero in reply to fell

Reason to be optimistic. Data says those who have low levels of MRD at least in the Ven-G trial do pretty well.

jbctx profile image
jbctx

Thanks Brian,

Considering all the recent posts and news regarding clonal testing this was a great video.

bkoffman profile image
bkoffmanCLL CURE Hero in reply to jbctx

Thanks

Slowmo457 profile image
Slowmo457

Last March only low number were platelets 163.Every thing else in range. Next check last Sept they are up 189. That's 13 years since treatment. My Doctor is very happy. God bless you all.🙏🙏🙏🙏

Sushibruno profile image
Sushibruno in reply to Slowmo457

What treatment did u have?

Slowmo457 profile image
Slowmo457 in reply to Sushibruno

Sushibruno I had Treanda,Bendumstine only no rituximab. At one infusion I started shaking Dr fixed it instantly. Doctor Said he is was giving me the most powerful dose he can 6 months of treatment. I feel very lucky. God bless and Praying for you and all of us. 🙏🙏🙏🙏🙏🙏

Sushibruno profile image
Sushibruno in reply to Slowmo457

Thank you....

roszika profile image
roszika

I just want to thank you for the great webinar about MRD which I just watched yesterday 22nd of August on the recorded event from 14 August. I am a CLL patient of Prof Con Tam at the Peter MacCallum Cancer Centre in Melbourne, Australia. I was ramped up on Veneteclax last April 2019 to 400mg (which I am on till April 2021)then received the 6 monthly Rituximab infusions and by November 2019 my MRD reading was zero. I now see Prof Tam by telehealth every 3 months and am fortunate enough that each time a few days before consultation I have a blood test at PeterMac ( including an MRD reading) which has stayed at zero). How fortunate that Peter Mac pathology lab can do the MRD and even better still at Peter Mac it is free. Australia is still a great country for positive health benefits. The webinar was so informative and your questions covered all my queries. I now have a much better understanding of the importance of MRD if one is treated with Veneteclax and of my possible positive prognosis. I am a retired pharmacist, having worked in community and for the Victorian Health Department and would like to compliment you on an excellent presentation- one of the best pieces of information I have gained as a long standing member of this forum. Sincerely R H

bkoffman profile image
bkoffmanCLL CURE Hero

Thanks for the kind words. They mean a lot. Stay well, Brian

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