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PCR Results

Hi all,

I hope everybody is well.

I was diagnosed at the end of November 2012 and am on Imatinib. My life is starting to get back to normal now - I have been back at work for a few weeks, my side effects are getting less, and apart from being tired on occassion, I am feeling pretty good.

Last week however I received my first set of PCR results - I am on the Spirit 2 trial and my bloods are sent to Hammersmith. I was given my numbers by the trials nurse at my hospital clinic and whilst she said things were moving in the right direction, she was unable to explain the figures fully. Apparently my BCR-ABL/ABL 'ratio' at diagnosis was 78 and was 29.86 at 3 months.

Things I have read thus far have usually given PCR results as a % - is a ratio different to this and if so how do I do I calcualte the %? I have tried to look this up on the internet and have come across people talking about conversion rates and international scales and I am now totally confused!

I am really keen to track my progrss and to understand my figures but I am not seeing my consultant until next month. I would be very grateful if anybody could answer my questions or point me in the right direction.

Thanks,

Sarah

Sarah - as I understand it, if you have a ratio of 78, this is "0.78" (of one), so the same as 78%. Both ratios and percent cant be against the international scale, as far as I can tell it is just a different way of saying the same thing. A bit like saying 0.9 is the same as 9/10ths and 90%.

I was diagnosed just a couple of weeks before you - started off at 3.2 (320% !) and am now at 22% 5 months later.

Hi David,
Thanks for taking the time to reply and for the explanation.
I am now a little concerned about my response, I have read that the aim is to get people under 10% after 3 months?
I feel fairly positive in general but do get a bit paranoid from time to time since I was diagnosed.
Sarah

Hi Sarah,

I am not sure where you are treated but given you are on the SPIRIT 2 trial and have been randomised to imatinib 400mg, I am sure your response is being monitored within the current ELNet guidelines (2009).

You should really try not to stress about this too much as there are several groups that have published articles on the relevance of responses at 3; 6; 12 and 18 month intervals and there are several different conclusions about how responses translate into overall survival and event free survival in the longer term.

A recent article which takes an overview of the IRIS study says:
"......patients who achieved major molecular response [MMR: BCR-ABL(IS)≤ 0.1%] by 18 months enjoyed remarkably durable responses, with no progression to AP/BC and 95% EFS (event free survival) at 7 years."

You, and others, might well be worried by the fact that you have not reached lower than 10% BCR-ABL transcripts by 3 months... but if you also take into account your prognostic score at diagnosis- i.e Sokal/EUTOS scote etc. - low risk CP CML usually means you will respond well to TKI therapy.

If by 12 months you have not reached CCyR then it might be a good time to talk with your consultant about changing to a 2nd gen TKI.

Meanwhile, I think you are within current guidelines for a good response to IM as you have a Major CyR.

best wishes,
Sandy

Hi again Sarah,

At 3 months, I was at 76%. I know when you read around, you can find markers which show that ideally you would be at 10% at that point - and we all want to be ahead of the curve, right? I was concerned too, as I seemed quite high compared to that. However, I was told not to worry by my consultant and I also had a good chat with a friend of my family (now retired, but until recently was a very eminent harm-oncologist in European circles) and his opinion was the same.

He felt that achieving, or getting very close to MMR at around 18 months was much, much more important and as long as the PCR result continued to trend downwards towards that then things are going well. All the same, you might bring it up with your consultant, as they're probably one of the best people to be able to put your mind at ease.

David.

Hi Sandy,
Thanks for the response and reassurance. My numbers are moving in the right direction so I will try to stay positive and will hopefully see lower numbers again when I get my next set of results. Should also probably stop reading things online and putting myself under pressure!
Thanks again,
Sarah.

Hi David,
I am feeling a bit better now. It's not a race and I suppose if we get there in the end that's the main thing. It probably sounds daft but I am only 36 and before dx I was very fit and healthy, never ill etc., I have followed all instructions to the letter and I guess I was just expecting a good result.
I will speak with my consultant when I see her but for now I'm just going to try to stay positive and get on with things!
Thanks again,
Sarah

I'm one of the somewhat younger patients, too - 33 at DX. I think that at our age we want to get back to 100% as quick as possible as we're otherwise used to feeling well with very few complaints that you might get as you age a bit.

Anyway, the very best of luck! I get my first PCR result since I switched to dasatinib on Tuesday this week. Hopefully lower than the 22% from last time. I think like you, I just want that number to go down as fast as possible!

If you don't mind me asking - did you change medication because of response or side effects?

Good luck today - hope you get a great set of results!

Hi Sarah
I too was very worried about the research relating to the 10% too. I was diagnosed last May (so just coming up to a year) I was on Glivec for 10 months and became very anxious after reading far too much online and stressing over the fact that my 3 month result was 23%, similar to yours. My consultant has always said I am ok and that Glivec is slower, but as long as you get there in the end, that is all that matters. I am now on Nilotinib and awaiting my first PCR result, and hoping for a drop.They changed me because I became resistant and my levels rose after 10 months, but there is no reason to think this will happen to you. However, my consultant spoke to a professor who also was happy with the slow response, so please try not to worry. I have had an awful year worrying, but have now learnt to try to stay positive and not read too much online, and to trust the experts. Hope this helps and all the best to you. Julie

I think this is an interesting discussion thread and while I agree with all those that have said it is worrying when you fear you have not reach the 'treatment goal' as published in the guidelines (ELNet/NCCN etc), I believe firmly that, no matter how distressing, you do need to keep reading and try to understand everything you can about the goals of TKI therapy.
How else can you advocate for timely access to the best possible treatment?

The key is to remember that each of us is individual and each of us responds individually to therapy- In the case of CML some say we are 'lucky' as we have a choice of therapy- at least in Chronic Phase and possibly Accelerated Phase- although with the advent of ponatinib, even that might change and include Blast phase.

We need to put the data into perspective and I agree that talking to your treating clinician is of paramount importance- but the answers you get depends on the clinician and often one can disagree with the other, sometimes quite profoundly. So where does that leave us?
It would be great if we could put out trust entirely in our doctors- and indeed some prefer to do just that. But in my experience, if you do not learn about your disease, how it works and how it is best treated then you can find yourself at a disadvantage.

Just to help with this discussion and to put what I have said into some context, I have put three related papers on the homepage, under one title.

http://www.cmlsupport.org.uk/node/7831

They are each written by expert CML clinicians both from the UK and the US and outline the current view of how best to treat CP CML.

I hope it is a helpful addition to this discussion and does not cause more worry!

Sandy

Hi Sandy
Apologies,Yes of course we should all be well informed, I was just trying to be reassuring about the 10% thing, I read absolutely loads, probably just about every article ever published I could find! My treatment response has not been good, and I am certain to fail the year target of CYR, but they keep telling me not to worry. I was still 28% PCR at last test, but hoping for a drop in the next few weeeks. Apologies if I seemed negative about internet research, your site is excellent and I will continue to read everything on there and I find the forum very interesting and helpful.

Please don't apologise- I understood exactly what you were saying and agree entirely. It is just that - as you have demonstrated - I really believe in informing yourself about the options for treatment and even though it is a very steep learning curve (and remains like that for the duration!) I think in the end it pays off for most of us.

I totally understand if people prefer to leave the decision to clinicians- and I am absolutely in awe of mine and willingly take her advice. But they are not able to keep up with everything that is going on, and many patients are not treated at centres of excellence so sometimes it pays to know your stuff ;o)

Fingers crossed that you will see zero's very soon. Please keep us updated.

Best wishes,
Sandy

Hi Julie,
Thanks for taking the time to reply -it's good to know there are people out there that understand what I am going through!
I am seeing my consultant in a couple of weeks so I am going to get her opinion on all this and I will take some of my 'research' with me.
It's not usually in my nature to be a drama queen, or to question everything to this degree, but I do feel I owe it to myself and my young children to make sure I am as well informed as possible about my treatment and results.
Sorry to hear about your worries - fingers crossed you get a great set of results next time.
Sarah

Thanks Sandy, will keep you updated, feeling much better about the whole situation now I am on Nilotinib and hoping for a zero too!

Hi Sarah
I was same as you, worried about seeming to be a drama queen etc, but equally I have 2 grown up children who I also owe it to, so I read everything and became well informed to the point I think they must have got fed up with my questions. Although we have 'the best sort of' cancer, it is a life changing event, I was healthy like you and it was a bolt out of the blue when they told me. I hope you get some answers when you go, if you would like at any time to talk to me direct I am happy for Sandy to pass on my details to you. Julie

Side effects - I had grade 3 bone pain (mainly in my legs) which just would not shift, and was getting worse. The imatinib was working, but it just was making things very difficult so we switched to dasatinib.

PS. I got my first PCR result back since I've been on dasatinib. I'm under 20% for the first time, which is nice. I am sure there'll be ups and downs along the way in future.

Hi All,
Further to my previous posts about my 3 month PCR results. I had some results back today from bloods which were taken just over 4 months post DX.
This sample was sent to Cardiff and it came back saying I had had a 2.2 Log Reduction since diagnosis which I am told is good.
Sarah