cll-patient-survival-improves: Recent analysis... - CLL Support

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whmk profile image

Recent analysis and discussion of old data at June ASCO:

27 Replies

Hi Life expectancy improved because earlier diagnostics ! Stage Binet A detected earlier (more blood counts easer because computer robots are very common nowadays ???) but I never found data for improvement in stages B and C since Binet in 1982. Have you found one with median overall statistics? I will be interested.Thanks in advance

CLLerinOz profile image

Here’s the poster/abstract:

whmk profile image
whmk in reply to CLLerinOz

dozens of interesting abstracts related to CLL but not a direct link to this one.

CLLerinOz profile image
CLLerinOzVolunteer in reply to whmk

I’m not sure what you mean. The link I provided is to the ASCO abstract referenced in the cllpharmacist article in your post.

AussieNeil profile image
AussieNeilAdministrator in reply to whmk

Whmk, the link referenced by CLLerinOz:looks like a direct link to the study of your referenced commentary to me. From the results section of the abstract referenced:-


For males, the 5-year age-adjusted relative survival rate improved progressively from 72.0% (dx 1985-1989) to 88.2% (dx 2010-2014); for females, from 76.8% (dx 1985-1989) to 90.8% (dx 2010-2014). The corresponding 10-year age-adjusted relative survival rates were 47.3% (dx 1985-1989) and 72.5% (dx 2005-2009) for males; and 58.2% (dx 1985-1989) and 78.7% (dx 2005-2009) for females.

These are stunning improvements. Arguably, some of the improvement could be due to earlier diagnosis in more recent years from the increased degree of blood testing as suggested by Phiphiminux, but we also need to keep in mind these very important facts:

1) Median age of diagnosis for CLL has barely shifted in the last decade, from around 72 to around 70, so Phiphiminux's hypothesised earlier diagnosis has at most, only resulted in an additional year or two of 'survival'. Also the rate of CLL diagnoses has stayed relatively stable over the years, not increased as would be expected if a significant number of diagnoses were missed from less blood testing. It has actually trended down since 2010.

2) Prior to the introduction of FCR about 20 years ago, there was no cure for CLL, other than a percentage of those who were given bone marrow transplants, which has never been a significant treatment modality for CLL and is also less used nowadays. We know from long term follow-up that about 55% of IGHV mutated folk treated with FCR have indefinite remissions, lasting well into the second decade after treatment. Unfortunately, because FCR is not recommended for those over 65, that possible cure was limited to a small subset of those diagnosed with CLL. (Median age typically under 65, compared to a median age of diagnosis in the early 70's then about another 5 years to first treatment).

3) FCR gave significantly long remissions to IGHV mutated folk. In contrast, IGHV mutation status has a much smaller influence on the remission time for the newer targeted, "non-chemo" treatments, which must be improving survival time statistics. There is also the expectation that indefinite remissions will be possible on combination targeted therapy treatments, opening up the opportunity for indefinite remissions for people older than 65 at the time of starting treatment. (About 2/3 of diagnoses are in those over 65).

4) The introduction of BTK drugs is recognised as a game changer for CLL treatment. People can control their CLL by staying on a BTK inhibitor for many years (approaching 10 years now), whereas earlier treatments stopped working sooner.

5) If a BTK inhibitor drug stops working, switching to a newer, non-covalent version often overcomes drug resistance. If not, we now have an increasing range of treatments available, including very importantly, venetoclax.


I kinda understand your response Neil, lol (I'm acll dummy) but I'm concerned for those of us that are diagnosed at a younger age. How many treatments will we get in our lifetime? And the impact these medications will have on the body.🤔😒.

AussieNeil profile image
AussieNeilAdministrator in reply to Sushibruno

I've seen CLL studies where the study cohort included patients with over 10 previous treatments and nearly all of those would have been "chemo" treatments. You're still approaching your first treatment! Given the treatments available to you now, don't beat up the bone marrow like those older chemo treatments and your first BTK treatment might last 10, 20 years, with who knows what might happen in that time, I wouldn't be worried about being diagnosed at a younger age nowadays :) .

🙂thank you, thank you, Neil🙂.

Reasons to be cheerful!!

Zia2 profile image
Zia2 in reply to AussieNeil

THANK YOU for responding so quickly! This was my understanding from my doc and information from this site. (After reading the research I felt panicked for a bit).

Ginajetta profile image
Ginajetta in reply to AussieNeil

Many thanks for your knowledge and insight.

Starting my treatment in the next two weeks. Was diagnosed 3 years ago and these reports are reassuring. Thank you

Hi, Neil... It seems that nowadays you can be deemed 'cured' of CLL - can you clarify what that means, exactly? How is it defined? I was told on diagnosis that it was incurable... on the other hand, after BR chemo I am now well into my ninth year of remission, and a recent routine blood test showed no sign that the CLL was returning, so... am I 'cured'?

As for the original post and info - it makes two important points - that survival rates are improving, and that those which are published lag reality by a few years... on diagnosis, I found an estimate online that for people at my stage, median survival was only 3-5 years, which as you can imagine was a bit of a downer - though it did concentrate the mind wonderfully. The doc did tell me that the figures were out of date and advised against looking them up, but you know how these things go!

AussieNeil profile image
AussieNeilAdministrator in reply to scarletnoir

CLL indeed has a reputation of being incurable, hence the reluctance of specialists to say the word "cure", with respect to CLL. This article explains the conundrum: In practical terms, when does an indefinite remission differ from a cure?

You are doing very well after your BR. Long may that continue.



Thank you very much for that - the article linked to was most informative.

I had a grim laugh about the early reference to 'secondary cancers' - as you may or may not be aware, I had a large and nasty squamous cell carcinoma on my nose, which appeared only weeks after the completion of the BR chemo - but it's also 8 years or so since it was removed (in 3 ops) and I am no longer asked to attend for follow-up checks, so I guess that I'm 'cured' of that, anyway - as far as the surgeon is concerned!

I do hope you are keeping well.

The link didn't work the first time I tried it - it went to a generic search box. Now it works fine. Thanks.

Statistics. Irrelevant for patients. It's completely individual. Relevant for insurance companies only, to model expected expenses.

Your response came out 4 times😆

Thanks Glenn

Thank you!!

Hi, I often wonder how many CLL/SLL patients succumb to the disease vs. from infections due to compromised immunity. This makes me think that the statistics may be impacted negatively by COVID19 in the future. Will cause of death from COVID19 have CLL/SLL listed as contributing? Mary.

whmk profile image
whmk in reply to czbm

No one knows but I believe you are right that many CLL patients die of infections and COVID-19 is the mother of all infections. Death certificates usually list the proximate cause and may list contributing causes.

The link doesn’t work for me. Am I doing something wrong?

whmk profile image
whmk in reply to IRN83

If it doesn't work the first time, try a little

AussieNeil profile image
AussieNeilAdministrator in reply to IRN83

If you are using the App, then there is a known problem with links not opening. As HU can't give any guidance on when the App bug will be fixed, please use a browser. Whmk had a problem trying the link the first time though, so it might work for you on another try.

IRN83 profile image
IRN83 in reply to AussieNeil

Thanks. I wasn’t aware of this issue. So thanks for the info

I need to remind my self that median survival rates have increased by a year or two which may not seem much to some of us, but it is still a disease predominant in those of us advanced of years and it is likely now we will die of something else not CLL. So good news, now they need to cure old age....😁

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