When you reach PCRU - complete molecular remission, does this mean that the CML has GONE??? Like other types of cancers in remission.
I seem to hear differing opinions on this.
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CML Gone??
The short answer is no! Sorry.
PCRu- U stands for undetectable- is a term used by patients not clinicians. It is a way of saying that by the current sensitivity of PCR testing evidence of the disease (presence of the abnormal protein bcr/abl) has not been found. HOWEVER, if PCR testing was more sensitive, bcr/abl would certainly be detected-
Currently it is very unlikely that anyone (outside some research institutions) is tested by a PCR sensitive enough to detect below 5 logs: i.e less than 0.001%
More and more CML clinicians are dropping the C (Complete) from CMR and talk instead about major molecular RESPONSE. In future you might see the following terms take the place of CMR...... MR3; MR4; MR4.5 to describe a patients major molecular response (MMR).
This is because, using the word complete (CMR) causes some people to assume this means complete REMISSION and then go on to confuse this as meaning they are 'cured'.
Presently TKI therapy does not 'cure' CML in the way you (and others) think about it.
In order to maintain a molecular response and stop the disease from progressing you need to keep taking the therapy- without interruption. If TKI therapy 'cured' CML then you would not need to take any therapy. That would in my view be a 'possible cure'.
Personally, I never talk about being 'cured', even though I have had an SCT and there is no evidence from my PCRs that I have any residual disease- I am sure they would find some if the PCR test was sensitive enough. Somehow, my new donated immune system is able to keep the CML stem cell/s still existing in my marrow from 'waking up' and reproducing.
With TKI therapy, I think what we can talk about is a 'functional cure' - ie. the disease is effectively controlled for the long term. It might be that some people, over time, might well be able to STOP TKI treatment without their bcr/abl levels rising, and we have evidence of this from the various STIM trials and other stopping studies over the last 5 years. BUT, why this is the case for some and not others is not as yet understood.... and anyway even in those cases who stop and do not see a resurgence of CML cells- can you safely use the word 'Cure'?
'Remission', is generally used to describe a response to treatment in other kinds of cancer therapy such as breast cancer etc. but remission does not mean there has been a 'cure' ...!
I think you need to concentrate on the fact that you have had an excellent response to TKI therapy and are likely to maintain that response over the very long term.
Whether you choose to think of you response as a 'cure';'functional cure'; MR 4.5 or something else, is to do with how you as an individual think about disease and health in general.
You still need to continue take your therapy on a daily basis if you are to maintain your current excellent MMR.
Best wishes,
Sandy