questions i feel silly asking my consultant...

I am not expert, but didn't like to read your post and not reply.

I don't know what percentage means you are in cytogenetic remission ( possibly 0.something)
The remission thing has always confused me too. My PCR reading has been 0.000 since dec 07, but not once had my consultant said you're in remission. He doesn't even big it up!! ha! I myself say I am in remission, as I like to say it and also it's easier to explain to people rather than going into PCR results etc!!!

I don't think there is a time limit with CML to be clear. Like other cancers people often get discharged after 5 yrs, I am under the impression that we will always have follow up appts.. hopefully longer than 3 monthly tho! I supposed docs know best and we have to go with what's best for us really.

I tend not to tell many people about my CML, but that's just because I don't want pity,and for them to feel sorry for me and my kids. Obviously my friends know and family,but it takes me a while to get to know someone before I spill. In fact my kids don't even know. They are 5 and 8, I don't see the point in them knowing really. Obviously when they are older and understand, but at the moment I don't see the point in worrying them and upsetting them. I think that's an individual choice you'll have to make.

I think if you're doing well on the TKI your on, your doc would be happy to keep you on it. But if new drugs come up, I'm sure there will be trials for new drugs in the future you will be able to join if you want.

Finally, my levels are checked every 3 months and have been for the last 4 yrs, it's frustrating that my appt's can't be longer apart, but that's a small price to pay to be alive ay!

I probably haven't answered anything properly for you, but's its just my opinion and out look on it all hun. Hopefully one of the experts will pop on to give you the right info.(and me, ha)
They are good questions tho, you should ask your doc, I am sure he would be fine with it. That's what they are there for.

Love Liz. xx

Q. At what percentage are you in cytogenetic remission?
A. Depends on which lab does your pcr. There is no standardisation of labs as yet- this has
been an ongoing project for some years now but the logistics of such are probably
overwhelmingly difficult. I suspect we will not see this for some time.
The lab at Hammersmith (imperial college)classes a complete cytogenetic response,
or CCyR, as around 1.5% This is when the PH cells are so low they are not visible using tests other than the molecular-
i.e PCR (polymerase chain reaction) which measures the ratio of the amount of fusion
gene, Bcr/Abl, against the amount of normal gene Abl.

PH + cells exhibit an abnormal translocation of genetic material between 2 chromosomes:
9 and 22,(5 exons of BCR is fused to 3 exons of ABL)
resulting in the production of a fusion protein -Bcr/Abl- which has an excess of
tyrosine kinase activity..... hence the development of TKI (tyrosine kinase inhibitor)
drugs that we know as imatinib(Glivec) dasatinib(Sprycel) nilotinib(Tasigna)-
which block the TK activity within the PH cell and thus the cell dies.

However, the stem cell that started the process (in most people) remains unaffected by
therapy somewhere in the marrow- it therefore retains the potential to produce
the abnormal PH positive cells. This is why current evidence -for the majority- shows
that TKI's need to be taken on a continuous basis for the long term.

Q. So when I finally get to 0.000 (hopefully sooner rather than later!) I was wondering, am
i classed as in full remission?
A. 'Remission' is a term used to signify something other than 'cure'... i.e when cancer is
treated with traditional chemotherapy drugs or surgery/radiation etc. it usually
removes evidence of a malignancy- whether 'solid' tumours such as found in the breast
or other tissue, or as in the case of leukaemias 'liquid' tumours.

'remission' in the case of CML treated with TKI therapy means just that- your disease
is controlled in the long term given that you take your therapy on a daily basis and
your levels remain low- preferably below 0.00something. 'full remission' is a term that
is fairly meaningless in this context-
you could ask how full is full or rather how complete is complete? Currently TKI's do
not 'cure' in the usual sense of the word- but they do give a 'functional cure'- you
can live life normally and most likely will not die of CML but rather (we hope) of old
age ;o)

Q. If not how long do you need to be at 0.000 to be there?
A. see above.

Q. Do I have to tell 'people' i have leukaemia or i had Leukaemia or not even mention it?
A. You don't 'have' to do anything- you are free to choose who you tell and what you tell
them.

Q. If you take a tki for the rest of your life, in my case nilotanib, do you get offered
new/better drugs as they are developed or only if your current tki fails you?
A. That depends on the healthcare system- as you know currently we are fighting the DoH -
NICE- for continued access for all CML patients to the best possible TKI therapy for the
individual... and that included high dose imatinib.

Of course, should it be that either dasatinib and/or nilotinib prove to be more
clinically effective than imatinib in the first line setting- and there is increasing
evidence that this is the case. Whether the government continues to take the view that
these kinds of drugs are not worth the money- or the investment- remains to be seen.

Q. How often are your levels checked?
A. This depends on whether you are in a study (with a protocol that must be adhered to) or
how well you respond to TKI therapy.
After some time (maybe a year or two) your doctor might consider that you have very
stable disease with consistent low pcr results. You might then need to be monitored
every 6 rather than 3 months.

I hope this is helpful to you, but you might ask your doctor the same questions- he/she might come up with different answers than I have ;o)

Best wishes,
Sandy