"MRD: What Should It Mean to Me?" This Friday, August 14th, the CLL Society presents Drs. Brian Koffman & Anthony Mato.

[bkoffman]

Will MRD status soon become a big player in determining when it is appropriate for you to stop certain treatments for CLL? Don't miss this! Find out! MRD testing ( for minimal or measurable residual disease) is important to understand. Measuring how many CLL cells are detectable during or after treatment may provide information that could allow patients to discontinue certain treatments ("limited" or "fixed duration" therapy). Join Dr. Anthony Mato as he discusses testing and research on MRD and its growing role in CLL management, along with webinar moderator Dr. Brian Koffman. Please register here: cllsociety.org/cll-society-...

[Sushibruno]

I wish it meant cure, I know it could mean limited time but then again I wouldn't want to be on meds the rest of my life.

[AdrianUK in reply to Sushibruno]

I think increasingly we will start to think of some patients as cured. If you have a very low level of disease (ie below 1 in 100,000) for a few years and it has no sign of getting larger at some point taking into account the previous rate of growth and a patients current age some patients will be told it seems highly unlikely the disease will ever come back properly.

I do get that the thought of detecting a few cells may actually increase the anxiety for some people vs being told they are MRDU at a higher level. But the advantage is we will be able to track the disease much better even when it’s at tiny levels.

[Sushibruno in reply to AdrianUK]

Thank you Adrian, my mind is always on gear with cll. I want to stop obsessing about it but it's extreamly hard. I want to relax like Neil tells me. Everything I think and say is out of fear.

[AdrianUK in reply to Sushibruno]

Well, it’s not surprising that you are anxious. There’s a lot to be worried about. But if you write a list of what your worrries are, how likely they really are, and what if anything you can do about them that may help. As will learning about CLL and realising many people live decades with this disease. And you are having counselling too. Finding other things that help like mindfulness meditation or even just watching something mindless on Netflix. Over time you will gain mastery. I say don’t fight the emotions but do fight the thoughts. And by fighting the thoughts the emotiond will follow. Have you watched the “tyranny of the positive” videos?

[Yidarmy69 in reply to AdrianUK]

Hi is this video on at 12.30 our time or American time please

[AdrianUK in reply to Yidarmy69]

Hi, the link says it’s 12:30 ET which means east coast time. So that makes it 5:30pm UK time (I see you are a Brit from some other posts). Here in the UK we are not likely to start using MRDU for the purposes of deciding when to stop treatments any time soon as we tend instead to follow the original studies. So in the uk most people will be asked to take the full six months of FCR, and will likely be offered the one year or two years of venetoclax depending on the stage they are at, but will be given ibrutinib ongoing as long as needed. It’s always interesting to attend the American meetings but important to remember they tend to be more flexible in how they use treatments than we do. So for example some USA patients will be given rituximab on its own but we in the UK would almost never do that as we tend to follow the original clinical trials more strictly.

[Yidarmy69 in reply to AdrianUK]

Hi again thank you I’m on ACE CLL 331 I’m on Acalabrutinib for a year plus venetaclax for a year my BMB has gone to America to be tested but no results for 4 months because of their protocols

[Sushibruno in reply to AdrianUK]

Thank you so much Adrian, I am fighting demons in my head. It's the biggest battle I have.

[J_88 in reply to Sushibruno]

It could lead to a functioning cure Sushibruno.

[Sushibruno in reply to J_88]

Cure is all I want, if I had a choice I wouldn't settle for anything else. Point blank.... I don't want to take meds😬.

[Hidden in reply to Sushibruno]

@Sushibruno There was a great webinar today on MRD hosted by the CLL Society. You should check out the recording of it at cllsociety.org. Dr. Anthony Mato threw out a LOT of info! He spent some time near the end discussing our "concept" of cure vs. his, as a clinical Oncologist. Your mindset of a cure is probably causing you needless worry and anxiety. And all science aside, I believe that letting go of what we have little or no control or power over and focusing on what we CAN control is in our best interest, physically, emotionally, spiritually, etc. Please pause and ponder on that for awhile. Your peace of mind depends on it. And maybe your body, too?! Ask somebody for a hug. A little love can go a long way.

[bkoffman CLL CURE Hero in reply to Hidden]

Well said!

[Hidden in reply to Hidden]

"I believe that letting go of what we have little or no control or power over and focusing on what we CAN control is in our best interest, physically, emotionally, spiritually, etc. Please pause and ponder on that for awhile. Your peace of mind depends on it. "

So well put! Thank you.

[Sushibruno in reply to Hidden]

Thank you, I also agree, and thank you from the bottom of my heart for your great advice. It means so much to me Johne1🙂.

[Hidden in reply to Sushibruno]

You're welcome. Enjoy the "relief valve" and the freedom that comes with it!

[Sushibruno in reply to Hidden]

You're a very nice and compassionate person. thank you so so much.

[mantana]

Will there be a transcript?

[bkoffman CLL CURE Hero in reply to mantana]

The video will be archived.

[DriedSeaweed]

Will this be posted soon? I got a phone call I couldn't ignore and missed ten minutes of Q&A. Ugh.

[bkoffman CLL CURE Hero in reply to DriedSeaweed]

Next week should be archived. No worries.

[Hidden]

Great webinar today, Doc! It was a LOT of info told very quickly. Good info, but the pace was tough. I will be watching your recording several more times, I'm sure, to absorb as much as I can.

Thank you very much for Hosting and please pass on my thanks to Dr. Anthony Mato!

I learned a LOT from BOTH of you!