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Blood Test - Now PCRU

Hello everyone

Great news

Today blood results PCRU

This is just amazing after all the ups and downs from my cml journey especially with my bleed out during the year and emergency hysterectomy

I have previously but again like to thank you all for the support at that time - meant alot

Hopefully my bloods will stay stable and do not become resistant etc but today is another memorable day that I would like to share with you guys

I have been on 600mg glivec since diagnosed August 2007
So just over a year to get to the PCRU Marker

Sue (Aussie)

Hi Sue,
this is wonderful news for you and I would like to congratulate you on your optimal response to Glivec. To achieve PCRU in just 12 months (less if you discount the time taken to test your sample) is really good news. It is highly unlikely that you would develop resistance now and much more likely as time goes on that you will sustain a very low molecular level.
If you maintain this for 2 years or more you might consider joining others who are on studies that maintain low pcr levels by switching therapy from Glivec to very low dose IFN.
There are also studies of a few patients that had been pre-treated with IFN and who subsequently reached and maintained PCRU for over 2 years with Glivec, who are now without any therapy at all yet maintaining PCRU status.
Over the next year or so I am sure we will see the publication of some really interesting data as clinicians start to understand more about the effects of TKI therapy and possible combinations.

Meanwhile enjoy yourself and celebrate this magic day.
very best wishes,
Sandy

Sandy

What is IFN and this type of treatment

Sue

Hi Sue,
IFN is an acronym for interferon.... sorry I should have explained. Interferon was used as front line treatment for chronic phase CML before Glivec and is self administerd by injection. It had pretty awful effects for most people and not many responded cytogenetically... however, there are some doctors who are looking at this drug again and finding more creative ways ways of using it in combination and at much lower doses. We will have to wait though until the results are published, which could be some time.
Sandy

Thanks Sandy

I will add if you do not mind to the Australia Chat Group

A few other people have just made PCRU before me and also
maybe interested in this knowledge to discuss with their
specialists

My blood results (Hard Copy) have just arrived in the post
so it is REAL now - Confirmed

Tracey, One of the other CMLers advise was not to worry too much if you bounce in and out of PCRU, most people do and it's not a big deal which is a great relief to know.

Is that your experience as well

Sue

Hi Sue,
my pcr's have been negative for around 18 months now... but that is how it should be as I had a sib matched stem cell transplant (mini allo + glivec + DLI study at hammersmith) in october 2003.
After 3.5 years on 600mg Glivec and CCR, I lost my response due to a Glivec resistant mutation (y253H)... at the time dasatinib was not in trial and so I took the sct option and I am glad I did.
This form of sct is much easier to tolerate as it uses less chemo than the traditional sct....but, because of this it can take a while to get rid of residual disease. See my diary for further explanation of the protocol.

But I remain free of CML without drugs. Hopefully this will continue ;o)
Sandy