Percentage of CLL patients who never need treatment?

[Biker7]

I’m looking for a recent article on CLL risk profiles that particularly details the percentage of CLL patients who are unlikely to need treatment. Can anyone provide a link or copy of an article please?

[Skyshark]

Any of these?

cllsupport.org.uk/informati...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

cllsociety.org/cll-sll-pati...

gpnotebook.com/en-GB/pages/...

[Biker7 in reply to Skyshark]

Thank you, Skyshark. The gpnotebook article is exactly what I was after.

[Melij in reply to Biker7]

Skyshark thanks for the great response gpnitebook article helped clarify things for me as well!

[Melij]

Thank you for asking this question Biker 7!

[Mwagner]

I’ve been fortunate to be on W & W since my diagnosis over six years ago. My oncologist said I was more likely to die with CLL than from it. Not sure if that comports with the articles?

[Rafcll]

I think the Gpnotebook article covers a lot of the period before some of the Btk inhibitors were being used. I would guess that survival has improved since the early time points used in the study.

[Pearlpink]

hi biker, reading it again it makes me realise why I was so upset when first told I had CLL!

The consultant just jumped in there and said “you’ve got CLL, you’ll know all about it. Best one to have. You will probably never need treatment”!

I remember thinking afterwards - did she mean 30% need treatment, or did she mean 30% never need treatment?

I got home and thought about it and realised it was only 30% who never need treatment, and that that’s not very good odds! Why was she dismissing me like I had nothing worse than a cold!

Of course everything has changed since 2019. We’ve had Covid (not good), but got fantastic new treatments - One of which I had within three years of being told I would probably never need treatment . I had V@O at a different hospital, who were polar opposite, and so kind, I’m in remission and I’ve never forgotten the first consultant who clearly never attended statistic lessons.

Personally if I was telling someone they had a 70% chance of needing treatment I would tell someone that “they might be in the lucky 30% who don’t need treatment, but even if they aren’t, there are lots of new treatments coming along”. I would rather not be gaslighted lol!

I think it’s a very good idea that you are compiling information! Good luck! 👍

[bkoffman CLL CURE Hero]

I would add that many who do progress and receive treatment with a BTKi have a similar life expectancy as those who don't have CLL.. we have come a long way in the last decade!

[wellbeingwarrior in reply to bkoffman]

Do you think that is the same for younger people diagnosed?

[bkoffman CLL CURE Hero in reply to wellbeingwarrior]

Not sure if we have data on that, but I don't recall age being a risk factor for poorer outcomes on BTKis.

[wellbeingwarrior in reply to bkoffman]

My father was diagnosed at 68 with indolent numbers and told he would probably die with it not from it. He died just after his 80th birthday after developing Parkinson’s that progressed. His father died at 71 of “some type of leukaemia” the family now suspects was end stage CLL (this was pre-chemo emerging as the first Tx for CLL). He interestingly also served in the Asia Pacific war with Japan before he had children.

I was much younger diagnosed and currently stable (but not indolent).

My Specialist at the time Dr Henry Chan explained to me it was likely I would face treatment decisions n my lifetime and laid them out for me (the landscape on this has since evolved a lot). I am in NZ and we are still very behind in funded options.

My preference is likely to be fixed duration treatment for the first go around I think. (Clinical trial or self/insurance funded)

Maybe age as a factor in choosing treatments hasn’t yet had a chance to be studied in terms of long term outcomes?

[SeymourB in reply to bkoffman]

Brian -

The thing I'm hearing from younger patients is that estimates have been based on older people who have shorter life expectancy, and can expect to have 3 or 4 therapies before they would naturally die at life expectancy. A 40 year old who expects to live till 80 or more might run out of options before life expectancy. We tend to counter that there are so many drugs in the pipeline. But how many of those are show stoppers that can be expected to provide more than 10 years of remission for the average patient? The best I can advise such patients is to do a triple, which allows you to repeat any or all of the triple, and follow the news on relapsed/refractory outcomes of combos, which are still somewhat rare because of how we must conduct trials to prove things.

I would also say that the analysis of PFS in trials is often poor - lumping many demographics and markers together into a single number, which is usually a percentage of patients reaching X year. A patient often cannot find themselves in the results. The PFS stats always have a range, and that's seldom commented on.

In short, where's the analysis of why someone does worse or better than average? All the big medical centers have huge patient databases to do such analyses.

=seymour=

[bkoffman CLL CURE Hero in reply to SeymourB]

All good points. Data are thin.

[Zweistein]

When I was diagnosed some months ago, I was definitely missing an info page specifically aimed at younger patients who, without CLL, would have a remaining life expectancy of around 40 years. For example, does it also apply to my age group that in 30% of cases, no treatment will be necessary? And if treatment is required, how long will there be options based on the current state of science? The examples of treatment regimens only cover one to two decades or 4 lines. Little by little I gathered all the information I could find - and still do. The presentations of ASH 2024 on YouTube, as well as this forum, were particularly helpful and gave me a lot of hope. The CLL Society website was also good, but the focus seems to be more on patients of typical age for CLL living in North America. The recently published revision of our German CLL treatment guidelines was also very informative and said that our statutory health insurance will cover all modern therapies without cost-based preferences. I am very grateful for that.

[wellbeingwarrior]

Without reading any of the links, intuitively I would add that age at diagnosis would also be relevant in %’s stated. I would imagine that age at diagnosis and progression climb trends from there would start to dilute those %s.

There is another subset of us diagnosed with CLL who’ve fallen way short of the average age of 70, therefore statistically I would think it to be realistic to need treatment in the future because of that fact.

I am 3 monthly bloods monitored, have an enlarged spleen and lymphadenopathy internally that is still not significant. Fatigue impacts the quality of my life but doesn’t strangle it. I work in a leadership role, am very kind to my work/life balance needs, have an active lifestyle and have really just got on with it post Covid life .. carpe diem!

Proactively pursued all the vaccinations recommended for CLL (Shingrex punched me for a couple of days this week) and do all that is within my control, and just keep living best I can and feel gratitude there are better options available now to manage when that time comes.

Breast cancer punched me in the tit end of 2023 and I put that to bed with treatment and will always wonder (without knowing) if CLL made me a better candidate to getting it. 🤷

[Zweistein in reply to wellbeingwarrior]

The best answer I have found some time ago is plots like the one attached: The probability of requiring treatment shown as a function of time since diagnosis, stratified by the CLL-IPI score. Interestingly, even in the lowest risk group, the curve rises right from the start and does not begin with a plateau. The question now is where "never" would be in these graphs. Does anyone know how they continue over 40 years?

( source: nature.com/articles/s41408-... )

Link fixed. A space is needed before the closing bracket - Admin

treated patients as a function of time and CLL-IPI

[Skyshark in reply to Zweistein]

Very few if any of the "high risk" will not need treatment within 10 years.

All the other KM lines are tending to plateau. If they haven't needed treatment by 10 years there is a very good chance they will never need treatment. About 15% of high, 20% of intermediate risk and 60% of low risk.

[Zweistein in reply to Skyshark]

What I mean is that even some patients in the low risk category may need treatment within the first year. A small CLL-IPI score does not come with a guarantee for a long time in watch & wait.

And I am not sure whether the curves reach plateaus after 10 years or continue to rise. This is why I wonder where they will be at the time of "never". 😉

[Skyshark in reply to Zweistein]

Not everyone presents with minimal disease or progresses from detected MBL to CLL.

You have to take into account idiots like me. Sat at home with a large lymph node under my jaw for a year and didn't notice the necklace of nodes. First blood test ALC 85x10^9/L. Bone marrow biopsy 4 weeks later, 75% infiltrated.

Middle of November Dx to 1st week of April Tx. Not del(17p)/TP53mut and probably intermediate to high IPL risk but IgHV and b2m are unknown. It would have been November Dx to February Tx but they needed a second opinion on the lymph node biopsy and I went on holiday, then had some failed root canal roots removed.

[Zweistein in reply to Skyshark]

At least CLL has the advantage that you can put the disease and its symptoms out of your mind for a long time, likely without affecting the prognosis. You do not have to blame yourself afterwards. 😉

[AussieNeil Partner Administrator in reply to Zweistein]

Zweistein, I thought exactly the same as Skyshark about the KM lines plateuing, other than the very high risk CLL-IPI category. Per the derived table I've attached, the percentage not needing treatment after 10 years is just shy of 34%. If you use Skyshark's estimate that "About 15% of high, 20% of intermediate risk and 60% of low risk" are unlikely to ever need treatment, that calculates at just over 31%. That's amazingly close to the 30% figure often mentioned.

While it does seem logical that those diagnosed with CLL aged under 50 are unlikely to avoid treatment while living out a normal life expectancy, I have been pleasantly surprised to see occasional reports in this community from people who were diagnosed at a very young age and who still remain untreated up to 25 years or so later. People in that category are also less likely to join an online community than those anticipating needing treatment.

PS I edited your reference to the CLL Treatment Algorithm paper so that it would work correctly. This site can't handle any non space or new line character after a URL.

Neil

Likely % never needing treatment derived from CLL treatment algorithm 2022

[Zweistein in reply to AussieNeil]

Hi AussieNeil, I noticed your correction, thank you.

I agree with your calculation. So the number of 30% seems to refer to a time span of 15 years, which is perfect for the median age at diagnosis of 70 years. I am just not sure if the same percentage applies for younger patients as their CLL might develop at a different speed and hopefully for a longer time.

[wellbeingwarrior]

That is really interesting, thanks. 😁