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Congratulations Chris Harrop

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Fantastic achievement from a member of the 'club' :

https://www.telegraph.co.uk/christmas/2020/01/09/cancer-couldnt-stop-rea...

The alarm bell was on the survival statistics though. 30% of men and 25% die within 5 years. I can only assume this is due to typical age at diagnosis rather than CML itself as all data I've seen suggests a far better long-term prognosis for those who sustain MMR+

Any ideas where this stat might have come from?

Chris

It wouldn’t be as dramatic without an exaggerated statistic. I don’t know My imatinib was chemo either.

Certain things in this brilliant story may be hopefully incorrect, but one thing isn’t and that is the determination of Chris Harrop and not forgetting the fantastic support of his family. I for some reason have read this story a couple of times, I just find it inspiring. Well done Chris Harrop.

I think I was surprised the first time I read Chemo on my prescription but yes TKI's are Chemotherapy.  It's kind of obvious but I think I used to associate Chemo with IV's and losing all your hair.  The 30% of men passing within the first 5 years is certainly not accurate in the TKI era.  Unless I am completely unaware of some new statistic but I don't think so.  Awesome for Chris to fulfill this goal.  I was excited just to get back in the gym so this is encouraging.

I'm in touch with the author at the moment. His stat isn't wrong in an academic sense - if you look at CML cases over a long period of time, it's true. If you look at cases in a more recent era it's of course different.

I'm trying to find him a more recent, and thus more forward looking statistic. 

The source he used was a very reasonable one - https://www.nhs.uk/conditions/chronic-myeloid-leukaemia/ - but I suspect it is based on stats from a study pre-2000 (ish).

Update: I gave him some more modern stats from a few sources, and he's going to change the article. It comes too late for the print edition, but the online copy will be updated. That's more important anyway, as it's the one someone who is diagnosed in the future might read followign diagnosis.

Update 2: The article now states very reasonably:

It develops more slowly than acute myeloid leukaemia, but it is similarly serious. NHS figures state that 30 per cent of men and 25 per cent of women die within five years of diagnosis, although recently developed drugs, according to research, have raised the five-year survival rate to 90 per cent or more.

David.

Thank you so much David, now I am back in a 'happy' place, forgetting the 5 yrs prognosis, just concentrating on the 90%...

Your intervention, by contacting the author of the article, is really valuable, by putting our collective mind more at ease.

In reality, it’s higher than 90%. And the 10% includes deaths within 5 years from any cause - knocked down by a bus, other illness, old age ... anything.

David. 

Wow David, higher then 90% is even better!

To us, the word 'chronic' is good and desirable: as long as it stays there and does not progress we are all happy bunnies.

sunny

I did write to Cancer Research UK concerning the apparent disparity between USA data and UK data. I received eventually a very defensive response. It appears at first glance that the NHS five year survival rates are very poor compared with the USA rates, but I would think that this is unlikely. When the data are tracked back to source, it does seem that the qualifications given in the original data are not transposed.

With some simplification, it appears that in the USA the five year relative survival for CML  patients who fully adhere to their TKI regime is greater than 90%.

I have read from various sources that the statistics may be compromised by CML patients who decide unilaterally to vary their drug taking regimes.

Cancer Research’s figures for 5 year survival are based on a paper named “National Cancer Intelligence Network. Trends in incidence and outcome for haematological cancer in England: 2001 - 2010”. Clearly there will be issues with the data in that study if you are looking at it through the lens of a newly diagnosed patient as it will have a lot of pre-imatinib patients in it.

David

Hi Nimbus

Thank you. I would like to know the relative survival numbers you would have based on stratificaiton of treatment milestone . My understanding is that CMR (old categorization) in the first 12 month confers a age-adjusted relative survival of 101% in the first 5 years and decline to 95% at 10 years. (based on Jorge Cortez's study). it is about 90% as you said for the entire cohort. 

Hello LabNoir. I could not find the data. The nearest I can get is at the following site:

https://www.hematology.org/Thehematologist/Diffusion/6534.aspx

 

These data are provided for those age over 50 only. I like the approach of looking at lost years because that is quite meaningful. Presumably, the introduction of the newer TKIs will improve prognosis. The full article discusses the limitations of the study.