Schematic for CLL treatment?: Is there a... - CLL Support

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Schematic for CLL treatment?

Research123 profile image

Is there a decision chart or list of questions somewhere on this forum for how docs make their decisions?(am not talking the nhs system who seem to just offer you fcr to start with as a default regardless as far as I can make out - more like a doc who had all options open). Thanks very much.

10 Replies
AussieNeil profile image
AussieNeilAdministrator

There are a few posts covering this interesting topic, but the challenges are that flowcharts are constantly changing as the data on new drugs and new combination treatments are published. More importantly, flow charts are country specific, depending on specific country drug approvals :( .

In the UK, the options will be decided by the outcome of the FLAIR trial and associated NICE approvals. I think the most relevant decision flow chart for countries like the UK with universal health care, is the recently published one by the German CLL Study Group. That was posted here, but I can't find it. I hope the poster reads your post and replies.

Neil

PhotonPal profile image
PhotonPal in reply to AussieNeil

For sure we can't expect to find an official treatment-selection decision tree, because the constellation of CLL drugs is evolving so fast. Sometimes a journal article will present 'treatment algorithms' which are like snapshots of the evolving mix. For example, the charts on pages 1280 and 1281 of this 2020 journal paper:

onlinelibrary.wiley.com/doi...

The paper is worth scanning for the charts and for the less jargony descriptions of the various therapies and their pros and cons.

What charts like these don't describe is how to choose between similar therapies, for example between ibrutinib and acalabrutinib. And the charts will often list two suitable treatment options with an 'or' between them, leaving the reader to sort out the pros and cons based on expected outcomes and side effects.

It's great that our forum discussions illuminate those 'or' decisions. For example, after my first obinutuzumab infusion I spend a week in the hospital, in the middle of which an infected gallbladder was removed. The whole experience made me hesitant about continuing that treatment. But some distance from the experience combined with the stories shared in this forum helped me put the risks in perspective again. Now I'm back to a less biased analysis of which treatment to go (or continue) with, and the forum is definitely helping me deal with these 'or' decisions. Thanks to all!

Paul

That's a brilliant article thanks. At the moment I'm on watch and wait but my concern is to have the knowledge so I can discuss appropriate treatment when the time comes -l think you get a better outcome in life when you understand exactly what is going on.

Having some of that knowledge sure alerts me to what to ask the doctor, and it makes it easier to understand his explanations. It's good as long as I set my bar at a modest level. Seems so much is inexact in cancer therapy.

Big thank you for this. Title says 2020 but the accepted date is July 2019 (still pretty current). Do you know if has been updated since original publication date or maybe it is just some sort of convention that they can use 2019 results to project 2020 treatment, etc. Thank you again.

I don't know. It's pretty common for a paper submitted in the second half of a year to be published early the next year, given how long the peer review process can take. Sometimes the reviewers ask for changes. But the paper is a bit 'old' given how fast the treatment scene is changing.

HopeME profile image
HopeME in reply to AussieNeil

I’d add that treatment selection is complicated further by the fact that experienced CLL Specialists can have differing opinions on which treatment is appropriate for a particular patient. I can’t remember the video I watched but several CLL Specialists were given hypothetical patient profiles and in some instances they came up with different treatment recommendations. The good news is there are many evolving treatment options. The bad news is there are many evolving treatment options. It’s complicated 😁.

Best

Mark

In our version of the HNS system, no one with a diagnosed TP53, 17p deletion would be offered FCR first or at all nowadays, to the best of my knowledge.

Research123 profile image
Research123 in reply to morepork

That makes sense thanks. The feeling I get is that fcr works clearly for some but ibrutinib, venetoclax and other new treatments may be better but haven't been around long enough for docs to be able to say in some cases that they cure you, which fcr has. And as you say, fcr isn't much good if you have 17p deletion.

morepork profile image
morepork in reply to Research123

Oops I meant to write NHS but I guess you figured that out! 😊

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