Hello, it is often said that the life expectancy of people with CML today is similar to that of the general population, however TKIs have only been among us for 20 years, so how can we know or try to predict this? I have seen a 10-year survival study which reflects a good general survival prognosis, however I would like to know if anyone knows of any study or information on the internet that supports that "survival is similar to that of the general population." , especially for young people like me who have contracted this disease, since a study of "only" 10 years does not solve much for us in the face of a future life project ... if anyone knows any more long-term study or data With statistics and percentages of probabilities of progression of the disease once a certain answer or some information of the kind has been reached, I would appreciate it if you let me know, I hope to be able to clarify more and if possible to reassure myself since the uncertainty is big, especially being so young and diagnosed a few months ago, greetings.
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cml overall survival data?
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I have wondered the same as I was diagnosed at 37 with three kids at home. It can be stressfull wondering such things. Every time I tried to go down the rabbit hole digging for such information I would come across people celebrating 10, 15, 20, 22 years since diagnosis. The ones that I find that have progressed and/or not had a good outcome are case studies for the medical community to learn from and study. It is still hard not to worry though. More and more I start thinking of it like Diabetes where there is no cure but people live long lives as long as they adhere to the recommendations. Anybody who responds to TKI's can enjoy a miracle of enjoying more time with our loved ones. I have encouraged others on the forum but still find myself worrying at times. I turn to God and in many ways the disease has made my life better. Enjoy the "extra" time you have being that we enjoy TKI therapy. Love your friends and family deeply. Nobody is going to tell us that we are going to be OK forever. All we know is that it is working, and it is working well. My doctor a few months ago mentioned that he has had two people progress in over 8.5 years at the hospital. He sees patients everyday year round. Do not skip any doses.
I remember being told when I was diagnosed by a Nurse that I was very lucky to have been diagnosed with this. At the time I thought she was ignorant and that I wanted no part in it. Going on 4 years later and reflecting on what my life has been like I get what she meant.
That's a great response and reflects my feelings almost entirely. And I too wonder all of the same things you guys do being diagnosed like you fairly young at 37 also with 2 small children and a wife. Its a case at every PCR test has my luck run out now. I feel like that at every one. That doesnt seem to get any easier for me. I test 6 monthly and for about a month before I am generally a mess (Due PCR results next Friday 21st). Its a funny old diagnosis, you spend years wishing to hit the milestones i.e MMR and that's a great feeling when you hit it. Then not long after hitting it the worry changes to "I hope I am still MMR or at the very least CCYR" so the worry really never ends for me. I think we all learn different coping mechanisims. But what I do know is I am hypervigillant with my body, weight, or strange feeling and it kind spirals a visicous cycle of worry.
The truth of the matter is no-one knows how long each of us will live because we just dont have the evidence and it doesnt exist so its pointless looking for it and thats a big burden to have, and just to be conscious of this at such young age or any age isnt a nice feeling in the least. We test regularly because noone knows when something might change and although I hate all the testing and the worrisome waiting its for our benefit that anything out of the normal is picked up quickly and adjustments are made. But none of that makes anything about having CML normal. I dont believe this is normal by any means, but its surely better than having some other type of cancer that requires intense therapy thats the only thing that makes this crap feel better.
But rest assured all these feelings and worries we all share.
Al
Hello, thanks for the answers, I saw a study in which it caught my attention that after 12 years survival increased slightly instead of going down, I suppose it means that someone who has achieved such a long-lasting good response is already rare to lose it and therefore survival, you could say that it resembles the general population, I suppose the important thing is to think that each person is unique and has their own circumstances, and try to make small advances little by little and not obsess over thinking. long term but better match by match, I appreciate hearing the feelings and thoughts of other people in the same situation about it, greetings
You’re welcome. Another thought that comes to mind is imagine that in 10 years you start to loose response to whatever TKI you’re on, you have another 4 or 5 TKI from the current batch to try and not only that in 10 years there will be more pioneering drugs available and possibly a cure (I am less positive about the latter however) but something that resembles TFR for more people maybe than the current 40-50% success rate for that. It’s always easy to give advice and sometimes I really should also heed my own when I too have times of struggle as we all do from time to time. It has to be said it’s a rather exhausting journey. We can only ever deal with the “now” and tomorrow is always an illusion.
Al
Hi!
I am fairly newly diagnosed myself (late November 2020) and as a newbie I tend to worry about this stuff quite often. It is difficult, being 31 and otherwise healthy, to face CML. I have reached out some of the members in this support group privately and have got some really good assurance that everything will be very likely good in the long-term. I've had somewhat of a rocky start myself but nothing very concerning in terms of treatment, although I was not an optimal responder after 3 months (borderline 16 % BCR-ABL coming down from 80 %)
I read this thread and I have the same considerations as Alex does. I am not certain about a cure as well but some kind of treatment which eliminates leukemic stem cells (our main cause of trouble) is currently in the pipeline (early stages) and we should be quite optimistic that the successful TFR rate will increase in medium-term future.
As an additional thought which I always try to remind myself when feeling blue on overall survival prospects is to consider what is the OS of the general population without CML and similar health characteristics as you. It is not 100%! Over a period on 10 years, OS of the general population ranges between 90-95 %. So in comparison, having CML with 10 year OS of 85 - 90 % and a relative survival of 97-100 % when in CcyR or MMR, the odds are not very bad. In fact, they are very good! I also consider myself lucky since I am covered with frequent medical monitoring by professionals which is good for general health.
Lastly, the survival statistics is calculated by the Kaplan-Meier (mostly) which is a very reliable statistical survival calculation method used in many treatments. At some point, calculating overall survival does not give any additional and valuable data - e.g. calculating an 20 year OS would already be borderline fortune telling since a lot can happen to a person over such a long period time. I would suggest you to take comfort in the fact that when you achieve stable CcyR or even MMR (and it is very likely) you will live a normal life-span.
So, to sum up. Even though my start has not been optimal in terms of treatment milestones, lets chin up together and try to focus on positive aspects of having that frickin' disease and on the fact that our outlook is very good ;)
Regards
Timo
Timo - I would say you are on a very good trajectory! 80% to 16% is definitely in the right direction. The three month target of 10% is there for a reason obviously but with such a great downward trend there is no reason to think you won't be under 10 and probably close to 1% at 6 months. In my case it was 64% to 23% (very scary), then 1.8%,, 0.81,.......currently 0.054%. Steady MMR. Not deep, but steady. Keep you head up and I would be encouraged by an 80 to 16 result in three months.
Hi ColoradoGuy
Yes, I have been following your path by reading different threads. I am happy that you are in a safe place! Reading your name I can only assume that you come from the US. I am from Estonia, a small country in Northern Europe.
Thank you for the encouragement! I guess I can be more or less happy with my result. My 4 month result was 11 % so the trend is in my favor. By rocky start I actually meant that I developed moderate myelosuppression on imatinib. My hematologist saw an opportunity in my health insurance to switch to nilotinib and then boom! - platelets down to 27 and neutrophils 0,5. Had to come off nilotinib for 2 weeks after my 11 % result and currently continuing on it on a lower than standard dose. My 6 month PCR test is in the beginning of June and I hope to be under 10 % definitely.
I also compared the US and European guidelines and found that the US guidelines are not that strict compared to European ones! The US guidelines suggest less than 1 % at 12 months whereas European guidelines are suggesting the same result at 6 months. I would really like to stick with the US guidelines but the clinicians in Estonia obviously are following European ones. I wonder why there's a difference - do US patients start out more with imatinib than European patients?
Anyhow, I know the guidelines are just arbitrary lines agreed on by the experts to monitor treatment outcome but they really cause undue stress for patients. I have now seen it many times in this forum.
I have to admit that this support page is a fantastic place. It really provides a lot of comfort and hopefully I return the favor for future newcomers.
Timo
Timo you have a great attitude. And that’s the way to be. Sometimes it is easier said than done as this fricking thing does chip away at you through time. I don’t think PCR testing ever gets easier, I was MMR 0.0771 at my last test at 2.5 years and I have results for my 3 year test this Friday. Your mind loves to play games come test time.
I always feel like I never really know where I am. I had a high Sokal score at diagnosis but a very low PCR of only 13% (yeah that lucky number lol) and took me 2.5 years to reach MMR. I’ll never understand those presenting PCRs and no one to this day has managed to explain to me any different. That always makes me a bit paranoid. It might sound like a weird thing to say but wish I started at 100% or there abouts like most. It continues to make me paranoid even though I am MMR and I am told all is good. Your 80 to 16% is nothing to turn your nose up at that’s a great response. CML doesn’t give a monkeys about 6% difference at 3 months. These poxy milestones don’t serve patients at all. They’re a guide for doctors that 90% of the time get ignored.
All the best with your next result. You’ll be down.
Alex
Alex,
Sokol scores are pretty much useless - not my words, the words of one of the best clinicians in the UK. Prognostic scoring was often developed pre-TKIs and they are not reliable especially when you are basing them on a single subject. Maybe they’re useful on an epidemiological level … but not to you and me.
I am Sokal (high), Hasford (intermediate), EUTOS (low), and ELTS (high). ELTS is the most modern but there is still a lot of nuance to it.
Starting point of your PCR test isn’t really that relevant either, which is why we “pretend” everyone presented with 100% for the purposes of IS results and log reductions. I was 321% and that didn’t really make things any worse.
But you are bang on right … 10% at 3 months, or 16% at 3 months is really nothing to worry about. It’s within a reasonably close range … do the same blood test again, on the same day, on the same machine, and you might get a different result. PCR testing is far from perfect and not perfectly reproducible. Milestones are important, but really for the patient only so if you miss them by a very long way. If it’s close, and the trend is downwards all is good!
David.
Hi!
Thanks everybody for the support!
I agree, PCR results at my level can be inaccurate and fluctuate a great deal. I currently have the trend and take comfort in it. Hopefully my myelosuppression will also take a step back and I can continue on the standard dose. I am feeling very well on the medication and no side-effects which I could feel so therefore life goes on as before my diagnosis. Although mentally, I am really making an effort to adjust.
Alex, it really is surprising how those milestones affect us mentally. I've now seen a lot of people on this forum who did not meet the 12-month MMR milestone (I think David included) so it seems it is rather usual.
To sum up, I have also calculated different prognostic scores for myself (Hasford, ELTS, Sokal, Eutos), I've read a lot of studies in regards to response and survival statistics, risk factors, additional chromosome aberrations (I have one in addition to Philadelphia no one has ever heard of before) and I do believe that a more or less educated patient has a healthy respect for the disease and therefore would be more compliant and can ask the right questions in the right time from their hematologists. Although, on the second hand, sometimes I feel that ignorance is bliss and knowing less about milestones and statistics would ease my mind - I would take my medication correctly anyways. So in general, it is a matter of balancing, I guess
I think what we all can conclude that time heals everything.
Timo
Cheers David,
That makes sense. I don’t know why that number has always played on my mind. I guess seeing so many people diagnosed close to the 100% and a few over like yourself made me feel like a minority. My consultant at the time said it was strange because I was so anemic. Whatever correlation that has I have no idea. In my notes it just says it’s unclear for the low PCR. They checked for p190 and that wasn’t present thankfully.
Dreaded PCR results again tomorrow hopefully still MMR. Will keep you all posted.
Thanks as always
Al
Survival data and survival analysis is a rather specialised branch of mathematics and frankly CML may be too rare to have enough numbers to perform this analysis.
At 20 years out from diagnosis, there are so many lifestyle and other factors which muddy the water and make it impossible to differentiate CML as a presiding factor in a death which occurs decades after diagnosis.
For instance, it could happen that developing CML young puts you on a life path that extends your lifetime beyond what it might have been if you were diagnosed later or not at all.
So much for the science though, in a great part whether cml has an impact on your overall lifespan (which is anyway future looking and theoretical) depends on whether you believe it will or not. If this sounds like hippie nonsense, look up research on placebo and nocebo.
Your life can be long and relatively healthy, whether it turns out that way or not is mostly up to you (not cml)
Totally agree with you Eva. Unfortunately not everyone can subscribe to this tenet, that we are the captain of our own ship.
But by the same token, it is also true that sometimes life does throw us a curve ball, which renders us helpless; no matter how good a captain we are....
On the whole, I agree with you that agonising about what may or may not happen, secretly harboring negative thoughts, may turn out to be a self-fulfilling prophecy, and Stress is a killer.
At the end, it is classically summed up in: Is the glass half empty or half full? and whether we like it or not, it is both.
Take care, pigeon.