I keep reading of different survival times for CLL patients depending on genetic factors,response to treatment etc. What I don't understand s where they start from- diagnosis? Starting treatment.? IT can't be form when you first developed it since we don't know and I suspect I may have had it a long time.
Also supplementary to this I am puzzling over the genetic factors. I did ask my specialist but didn't really understand the answer.
I am still on W & W feeling mostly well apart from recurring indigestion...my white blood count however is increasing and am told that if it has doubled in a year treatment (FCR) would normally be recommended. So remain in state of uncertainty like so many.
I am presuming in fact that the survival time is from treatment thus prefer to put it off as long as possible. ...
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romarin
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Hi Romain, it's an intensely difficult subject without thankfully any definite answers (well I'm not sure I could cope with them anyway). I don't know if you've seen this and I'm aware it's a little dated too but the principles hold true and I found it useful.
The important thing to note is that treatment options and the actual understanding of CLL has galloped along since this was published. Our unique profile does matter (although subject to change and evolution, particularly following treatment) but the mutated/unmutated element remains important).
What I hang onto are the immense developments, research and improving treatment options even with the less favourable prognostic deletions. I haven't had a FISH test personally and that's very much by choice.
Wishing you well and I appreciate just how psychologically unsettling it must be to be kept hanging each consult on treatment dates.
A FISH test isn't routinely offered in the U.K. until treatment looms Nanno so at the moment I wouldn't be given one even if I desired it. I did discuss this with my Consultant a few weeks ago because presently I'm totally clueless about any bio-markers or mutational status (and of course he is too).
Coming up to 5 yrs since dx in May I try to reassure myself that my chromosomal profile can't be too bad but of course it's impossible to be sure. Truth is it's a double edged sword and there's some comfort in not knowing because whilst the mutational status won't change, my profile may change over time.
I'm always astounded at the level of cytogenetic information our American members are given because in the U.K. it's not unusual to be told we simply have CLL.
I could push for it at a specialist centre but I feel disinclined to because unfavourable deletions could sap my resolve.
I'm sure many would disagree with this position but its what the NHS offers.
Romarin, I'm sorry to have to tell you that survival time statistics are measured from diagnosis. Time to (first) treatment is another statistic that is also tracked. It is still sound advice to put off treatment until needed, (at least with traditional immunochemotherapy such as FCR), because overall survival has been found to be independent of when treatment occurs. That fact seems to be have changed for some with the right genetics treated with FCR and we anticipate with the newer, non chemo treatments, but it will take some time before we gather the statistics to prove that.
Thanks for both these replies. I am trying to digest all the diagnostic science stuff and conclude that one can' really know - as Montaigne recommends get used to the idea of death as inevitable (that means everybody) and then you can get on with your life. (I recommend Sarah Bakewell's "How to Live" an easy to digest and amusing read about his philosophy)
BUT Neil why do you say sorry that they measure survival times from diagnosis, because if they were measured from when it first began that could be years already gobbled up of your survival time. This means that in deciding when is the right time to begin FCR that I won't be thinking the longer I put it off the longer I have got ....
Romarin, The reason I said I'm sorry is because it isn't from when you start treatment, which is one of the options you gave. .
As Newdawn says "What I hang onto are the immense developments, research and improving treatment options even with the less favourable prognostic deletions." I also believe that there is much you can do to extend your life with CLL by just taking better care of your body, so that it is better able to live with the CLL and treatment if/when it is needed.
Many of the stats are several years old now so as new treatments come along will hopefully look lower than reality. Also there seems to be a younger profile these days, comparing the survival times of 70 year olds vs. 55 year olds also suggests to me some of the stats are more pessimistic than need be, unless I'm missing some key data points on age significance.
We only have what data is shared to make our comparisons with.
Rob
Hello Romarin,
On my last visit to hospital (I was dx in April 2014) for blood tests, I sat next to a lady who had been dx 30 years' ago, all she suffers from, is a very cold, occasionally. So I guess it's 'the luck of the draw'. Although it is, at times, stressful and frustrating to have 'the sword of Damocles' suspended above our heads, knowing full well, that we can do nothing about it!
For my own sanity, I chose to tell, only two trusted people about my 'condition'. I'm glad I made that decision. Like you, I think I've had CLL a few years, it all adds up, when I think about it.
Just a quick note to say that I know I had CLL in 2001, because of a dicey blood count, although it wasn't Dx then. Since then I have been well most of the time (apart from shingles). I had a dip this summer when I had no energy, but I'm back to (my) normal now. I'm 67 at the end of this year. You may well be the same, and once the fear and surprise has died down, you can relax a bit. The fears boil up every now and then, but this group can help you with that.
all the best
Chris
I found Brian's post giving an interview with Dr Kipps, holds out much hope for the future.
Hello romarin. I was in the same position, asked the same question 9 years ago when I was diagnosed. Because I was told I was unmutated and had the 11q deletion I probably had less than 4 years to live. I mentioned this to a running friend, an MD ( pathologist), who reminded me that those kind of statistics usually refer to a mid-point of a distribution of outcomes, most likely the median survival. In other words 50 % of patients are expected to live beyond the median. I am still around and feeling fine 9 years later. Forget about those stats and enjoy life. If you haven't already done so, I suggest you read the following article by the famous scientist Stephen J. Gould who provides the now classic response.It's on the cancerguide.org website:
I was touched to receive all these replies. Especially Louis who like me reckons he has had CL a long time...BUT I still have a question. Which is if survival time is reckoned from diagnosis what if the diagnosis is quite late. In my case it was not until I presented with a lump in my throat (the metaphor resonates...) and am Stage B. I did in fact have queries over a GP blood test back in 2011, according to a note scribbled to myself I found recently, but it was not followed up. (And now have changed GP and they have not found my notes 6 months later!)
Another thing I wonder if people could mention the country they are in - it is not always obvious, and of course our experiences will vary a lot....
I stopped thinking about the 'what ifs' a long time ago. I don't see the point. I was told the mean survival rate was 10 years and I am now over 21 years post diagnosis. The way has not always been easy but I feel better now than I have for years. I am now 58 and don't think 'how long will I survive?' but 'how do I make the best use of the time I have?'
When I was first diagnosed, the doctors had little idea of how to treat me, as I was younger than most with the diagnosis. I am so excited with all the research going on at the moment! There is much more known about the condition and, although a cure has not yet been found, prospects are better now than ever.
My advice, for what it is worth, is to focus on enjoying the life you have rather than worrying how long it will last.
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