Does Untreated Asymptomatic CLL Carry Risks? …early treatment does not yet improve survival of certain patients, from 2 year study results.

[lankisterguy]

Does Untreated Asymptomatic CLL Carry Risks? from Patient Empowerment Network on Vimeo.

powerfulpatients.org/2023/0...

vimeo.com/851522316

And it was the CLL12 trial that was just presented at the European Hematology Association meeting that compared ibrutinib (Imbruvica) to a placebo in a blinded trial in higher risk CLL patients that didn’t meet clinical criteria to treatment. And the overall survival of the two groups after several years of following patients was, there was no difference in overall survival. So yet another study confirming that there’s no…you do not improve survival of patients when you try to treat them early.

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Len

[Samm22]

Thank you for this link and video. I have been following this trial and while earlier treatment did not significantly improve survival I don’t see that it showed that it hurt survival. My doctor and I decided to treat my CLL early due to my notch 1 mutation and high risk of transformation. This trial did not mention notch 1. Notch 1 is a small percent of CLL population (about 10%). I think it would be difficult to obtain data on benefit or harm of early treatments in such a small subgroup.

[lankisterguy Volunteer in reply to Samm22]

Hi Samm22

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There are 2 doctors at Weill Cornell NY Presbyterian (Dr Richard Furman & Dr. John Allan) that agree with you and will early & aggressively treat patients with high risk of transformation. See one of their research publications: pubmed.ncbi.nlm.nih.gov/314...

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and a similar European study: ashpublications.org/blood/a...

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I believe that you are correct, since Dr. Furman has been pursuing this for over 10 years and while he believes that early treatment is wise, he acknowledges that data to prove it is elusive.

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Len

[Snakeoil in reply to lankisterguy]

I read both research reports but failed to find a paragraph advocating early treatment. Could you perhaps help point me in right direction?

[lankisterguy Volunteer in reply to Snakeoil]

Hi Snakeoil,

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It may not be mentioned in the studies, but he has expressed it verbally in several of our face to face discussions and also in a comment to our Pinned Post healthunlocked.com/cllsuppo...

An opinion from Dr. Richard Furman Wed, 05 Sep 2018

"Nothing has changed as of yet for watch and wait patients. My belief is that for 75% of patients, watching and waiting, and then starting BTK inhibitor therapy will be sufficient to provide extremely long-term disease control of their CLL. For the other 25%, we have issues with transformation and BTK inhibitor resistance. These patients do need something different. One theory of mine is that earlier initiation of treatment might be beneficial. We are currently writing a trial to test this, but for now, we are still doing it the way we always have."

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Dr. Allan has followed similar approaches with a few members of our CLL Society support group that have aggressive markers that might predict RT.

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Len

[Samm22 in reply to lankisterguy]

Hi Len

Yes not all CLL specialists agree on this point. I appreciate how you attach links to your responses. I will try to also in the future.

[SofiaDeo in reply to Samm22]

There's at least 1 study looking at early intervention in high risk of RT transformation patients, so someday there maybe good data.

[Snakejaw]

I find myself in a unique position, where I wonder if early intervention would’ve been advantageous. My initial fish results showed “normal” cll with no deletions, I waited a year and change only to find my new markers as high risk with multiple deletions including 17. The disease progressed and changed during watch and wait.

Could I have staved off progression and kept my disease at a more manageable level by introducing treatment earlier, or even potentially change the entire scope of my illness?

I’m not sure overall survival between the two groups answers that question.

[Otterblue2 in reply to Snakejaw]

I have a similar experience as you, I was low risk, low numbers and mildly anemic. I was also athletic and youthful for my age. After getting the first round of Covid which was extremely severe, Tp53 mutation appeared and my CLL accelerated at an alarming rate. Research doc said the extreme Covid response may be factor in the Tp53 mutation. At any rate, at 14 months post AVO Trial, my health and bloodwork is nowhere near as good as when I was first diagnosed with CLL, but thankfully in remission. My doctors tell me this is my new normal. Clearly I would have benefited from early treatment, but that’s not the case for everyone.

The AVO drugs put me in UMRD, but given my weakened constitution, I will probably not choose treatment again, if, or as my doctor says ‘WHEN CLL returns’.

Perhaps with more research and experience treating CLL we will change the rubric for who needs early treatment vs who needs watch and wait.

[SofiaDeo]

I wouldn't reach the conclusion "So yet another study confirming that there’s no…you do not improve survival of patients when you try to treat them early." One *can* conclude that treating with ibrutinib in asymptomatic patients with those specific markers & labs showed no difference after 2 years. Other markers, other lab/severity, may have had different outcomes. You can't extrapolate data from a specific group out to everyone.

I strongly object to the title of this post, I think it's very misleading and misstates the data of that study. You *can* say, "you do not improve survival of certain patients 2 years out with early treatment".

[lankisterguy Volunteer in reply to SofiaDeo]

Hi SofiaDeo,

How about the modified title now "early treatment does not yet improve survival of certain patients, from 2 year study results" I hope that is clearer and addresses your concern.

Len

[SofiaDeo in reply to lankisterguy]

Yes TY! Because I am seeing some studies where practitioners are questioning *if* certain subsets will benefit from early treatment. If people are thinking "studies are already out showing there is no benefit to early treatment" overall but they are in the group where docs are wondering if early treatment *will* be beneficial, they may refuse considering treatment.

[JerrysGirl3]

Len Don't you think it depends on the kind of CLL, how long the person had it before diagnosis regardless of whether it's just sitting there, their lifestyle, etc etc. i actually believe in this and as is the case with my lupus, I believe I was started on meds I didn't need when I had no serious symptoms, which hurt my body and brought the lupus out with a vengeance upon stopping. I just believe there are too many constants (not sure if that's the right word) that preclude coming to the conclusion that early treatment is not necessary.

[lankisterguy Volunteer in reply to JerrysGirl3]

I posted a video of a CLL expert expressing his opinion and the results of a clinical trial.

And have answered with other expert opinions that cite exceptions to the general guidelines.

Everything in CLL is heterogeneous, not all cases follow the guidelines and statistics, so you and your doctor need to decide if your case is an exception or if the guidelines are valid.

Len

[Stamphappy]

Thank you for your post, Len. It's the heterogeneous nature of cll that makes these decisions so complicated. I'm grateful for everyone's input. I pray the answer to this disease will be found in my lifetime. If not, I hope to participate in a trial that leads to answers for others. Hopefully, soon, they will discover how to tame aggressive cases without trashing quality of life. I personally feel without quality, quantity means nothing...I'm making the most of every day and counting my blessings along the way 😊