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CML survival rates

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Hi All,

I am sure that many of us have come across media articles that highlight the cancers that are difficult to diagnose ,difficult to treat and also have low survival rates.A former GP of mine was straight to the point and said that apart from an accident we will die of three possible groups of ailments-heart,cancers or dementias.My late partners neurologist said to me that dementia was a fatal condition and a horrible way to die and we have little idea still of the pathway to decline and eventual death as the patient is not able to relate effectively to medics their experience of mental and bodily decline etc.

Survival rates for cancers might be expressed as 1,5 or 10 year rates;the most common one is the 5 year survival rate and basically tells you what percentage of people live at least 5 years after diagnosis or when the cancer is found.Many tables showing rates will show all leukaemias grouped together so for CML  we have to rely on specific and various  studies of survivals. I remember when dx first of all in 2006 that I came across one study that for those being treated with Glivec (imatinib) the survival rate was a high as 90 to 95 %.Now with the introduction of other tkis, rates may well have improved I guess.Apparently the survival rates for CML depends on the phase of of the disease,other biologic characteristics of the CML and the response to treatment of the disease.

What prompted me to create or re- create this thread is an article that I read in a popular daily newspaper highlighting how hard it was to spot pancreatic cancer;the symptoms can mimic indigestion or IBS and show stomach pain or back pain.As it is an organ hidden behind the stomach it is hard to image and not easy to treat after diagnosis.If not treated in its early stages then the sarcoma spreads to other organs  and overall the  5 year survival rate is as low as 7-8%.Cancer of the oesophogus is another low survival condition and one can list other low survival cancers of the brain,liver lung,stomach,bladder and ovaries.Despite being still big killers in terms of numbers ,survival rates for prostate and breast cancers are often in the range 70-80%. However these very much vary with stage of diagnosis and treatment and also can be slow growing say compared with say pancreatic disorders.

Of the leukaemias it would seem that CML is relatively easy to treat;my specialist said to me that AML is often extremely difficult to deal with for instance.So we are told that having CML allows us to expect a fairly normal life span but effecting a cure is still very difficult-whereas for some other early stage cancers a cure is still possible .For instance my early stage prostate cancer treated with iodine-125 less than two years ago according to my latest PSA scores is already on the way to a complete cure.

Does anyone else reflect on relative survival rates and how having CML is likely to involve lifelong treatment but is still probably at the top of the list of survival rates of cancers?

Regards

John

I had a conversation with a well known CML specialist in this country about life-long treatment. I asked would they ever discharge a CML patient, and the answer was basically "no" because it would be risky. But we imagined a point where someone might have been in TFR for 20 years, and really at that point are they cured? Could they be discharged then? Or maybe seen just once a year, perhaps not even seen but just a blood sample once a year and if all fine then no consult needed. They already had patients who they said the consult was 95% a social meeting, rather than a medical one.

I don't particularly like that I have decades of CML clinics ahead of me, but at the same time that means I have regular blood tests and touch-points with a doctor so maybe that will help catch something else earlier. For example my last set of bloods had a Hep-B immunity test in it (a bit low, would be a concern if I worked in healthcare so we'll keep an eye on it). I can't imagine having that level of scrutiny on my medical status if I wasn't a CML patient.

I often think about this subject though more in the context of comparing the CML survival against other cancers. Like David, I don’t expect ever to be discharged though my consultations have been largely social for ages (at least since I completed DESTINY in 2017). Indeed, they’ve obviously been by phone since the pandemic started and the last one was essentially a call from one of the specialist nurses who called just to say my bloods were all normal. I get my PCR by email.  This seems to be the way forward from here, for me anyway, and that’s all good with me.  I only go in to have blood taken and would expect only to have to see one of the doctors if something changed or if the blood work picked up anything odd. I agree with David that it’s something of a bonus to have regular blood checks - and I bear in mind that my CML was picked up in a routine blood test.

On survival, I believe my life expectancy is now normal and I don’t think about it in the context of CML. I am aware however that there is a (thankfully small) number of patients who have more difficult disease and it’s essential that we don’t allow CML to become considered to be a condition that’s “fixed”, regardless of functional cure for most. Also, having lost my father, an uncle (other side of the family) and a very close friend to brain tumours, my father in law to late diagnosed prostate cancer and having another friend in his 40s recently diagnosed with advanced pancreatic cancer, I’m acutely aware of how fortunate I am. I am hopeful however that medical science will solve these problems given the huge advances in diagnostics and genetics in the past 20-30 years.  It will take more time, effort and, of course, funding - but I’m convinced we will get there with effective treatments if not actual cures. Especially if research is international and collaborative.  

Richard

 

Hi John,

Since I don't have any major side effects from taking TKI, I'm inclined to see it as a supplement. I need TKI just a like a body builder needs a protein shake to build muscle mass. It is a miracle drug. If somebody could go back in time, like 1000 years, and say - here takes this pill everyday and you will surive - everyone would think that is a magic trick. By the way, I believe humans use science to reach the fantasious.

I hope one day TFR is understood better. An approach to dose reduction could have a better definition as well. For example, I would be interest in knowing if at some point in treatment someone could be taking just one pill a week.

I do hope that TKI prices go down, despite generic versions being out there, the current prices are unfair. 

Also, after being diagnosed with CML at an early age, 28, I started to believe in disease prevention and early detection. That includes diet, exercise and some effort to do routine checkups of any kind.

Best,

Israel,

I really like the thought that the TKI is like a supplement. Of course it’s much more important than that, but if after a while that’s how it feels I think that’s great!

David.

It can't be denied that the less TKI that we take over the longterm, the better off we are likely to be.  That being said we should begin dosage reduction as early as possible.   Possible being defined by the rate of response; on average gradual dosage reduction should begin in 2 1/2 years.  However, on the other end of the spectrum, the rate of response could be so high that dosage reduction could begin in 6 months.  When it becomes obvious that you no longer require full TKI dosage, at 1.0%, or less, usually for a prolonged period of time, that gradual dosage reduction should begin.

Gradual dosage reduction shouldn't require monthly testing; it isn't as if you aren't still taking a meaningful amount of TKI; it's highly unlikely that your CML level is going to go anywhere quickly, so continue with normal quarterly testing.

Begin gradual dosage reduction, by lowering your dosage by approx. 25%, six weeks prior to your next quarterly test.  Repeat until you reach the lowest TKI dosage available.  

It's possible to continue to lower your dosage beyond the lowest dosage available, by first skipping every nth days, leading to taking a pill every nth day.  There are a few CML patients taking Imatinib 100mg every other day; Sprycel 20mg every other day; Bosulif 100mg every other day..  They haven't yet attempted to find their lowest possible dosage. 

For expected longterm maintenance it is advisable to find your lowest possible dosage.  Although younger patients tend to tolerate TKIs better than older CML patients, that's not a good reason to be taking more TKI than you need to suppress your CML. The less TKI we take over the longterm the better off we are likely to be.

 

At the beginning of everything I remember that a doctor tried to reassure me by saying be calm that you will die of old age (diagnosed very young 22) I try to think that he told me believing it really, however, since the tki have existed for only 20 years, how can something like this be known ? I suppose we cannot know if it is true, but neither can we know if it is a lie. We have to trust science and try to move forward, regards.

Tki have only been commercially available since 2000s, they have been knocking around in some form since the late 80s.

"The Philadelphia Chromosome" is a recommended read on the full history, medical and commercial.

Hi Eva,

The book by Jessica Wapner is truly a good read and an excellent piece of medical journalism which is not beyond the understanding of most patients with even a minimal science background.Prior to Gleevec (or Glivec in Europe) the treatment offered was usually interferon alpha by injection and the side effects were constant flu like and feverish effects-at some stage the PCR would spike and that was a sign that one was on the road to fairly rapid decline and eventual death.If one  qualified for any form of transplant the risks were very high and a lifetime good response was not guaranteed.

Another book which is a good read is" Magic Cancer Bullet " by Daniel Vasela and Robert Slater published 2003 and chronicles how a tiny orange pill is rewriting medical history and goes in to great detail of the most rapid drug  approval process ever undertaken by the Federal Drug Administration of USA that culminated in availability of Glivec as from May 11 2001-prior to that this tki existed in labs and was an experimental drug STI 571 used in trials on the west coat of US.

The efficacy of the first tki was such that medics would say if you are going to get a cancer get CML because we can treat it and that is why we are told that generally we would have a normal life span.When I was dx 15 years ago  survival rates for CML were 95% over 5 years.The purpose of my initial  posting on this topic was to ask if any evidence existed of even better survival rates now that we have five tkis approved with in addition Asciminib up for likely approval soon.

This has to be contrasted with the still abysmal 5 year survival rates for pancreatic cancer and cancer of the oesophogus which still lag at between 5 and 10 percent.

There are course still a very small proportion of patients who do not respond to tkis or who are diagnosed very late or are in parts of the world where access to expensive medicines is limited.However because of such extremely high survival rates for CML the pool of CML patients being treated increases year by year as new cases emerge.

Regards

John

Hi John,

Late reply....

I did reflect on the following after my Dx.

In the UK newly diagnosed CML patients are likely to look for and read the NHS listed survival rate, it being a trusted source. The link is below. The survival rates on here are 70% for men and 75% for women at 5 yrs, better outcome if found earlier. I think this rate is somewhat unhelpful without sufficient detail.

https://www.nhs.uk/conditions/chronic-myeloid-leukaemia/

Rgs

 

Hi Roza

Thanks for posting with some afterthoughts.

Yes it is surprising to see the NHS site come out with such low 5 year survival rates.Googling" CML survival rates", what seems to be the case is that

-survival is age related

-survival is better for females

-stage of diagnosis is important so basically the sooner one is on a tki then then the better the chance of treating the disease

-studies do vary regarding survival rates ,so some smaller population studies of CML patients come out with 90 per cent plus survival rates

So I guess the data is not perfect and seems to be aggregated and consists of estimates as well.Reasons for non survival I suggest are new mutations,intolerance to the tki ,other forms of resistance and also co morbidities-essentially the older you are when dx the more liklihood of other cancers,heart issues etc;some of these may be reactions to the tki s such as heart issues with nilotinib or pleural issues with dasatinib or vascular issues with ponatinib etc. CML is blamed for some of the deaths that might be related to other diseases so for men it is a case of what do you die of first say prostate cancer or CML?

However back before 2002 and pre Glivec/imatinib 5 year survival rates were about 22 per cent so anything between 70 and 90 percent is a massive improvement.The main point of my posting was that there are other cancers that patients will experience that have very low survival rates such as oesophoghal and pancreatic cancers.

My view is that I suspect that something else will get me first;having survived CML for 16 years now as long as I can keep my PCR below 0.1 % with no new mutations is my main priority.I think that if one is relatively young and say only recently dx then the prospect of a lifetimes treatment on tkis not an ideal one but shoild not be regarded as a death sentence or a fatal illness.

Happy 2022

Regards

John