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Progression rates

Hi I was wondering if anyone knows the difference in progression rates for patients in CCR and MMR. Robs PCR after 6 months on Nilotinib is 0.8 and has bobbed around between 0.2 and 0.8 for the last 2 years. When we saw a member of Graeme Smith's team on Friday she said that they now consider it very unlikely he will ever reach MMR (4 1/2 years since diagnosis). She said not to worry as there was little difference in progression rates but didn't elaborate. She said the aim now is simply to maintain CCR, which we were a little disappointed about. He's having a bone marrow sample taken on the 17th just to check that's still clear and we hope to see Dr Smith at the beginning of Dec.
Any info would be appreciated
Sal

Dear Sal,
It is my understanding that there are no data that show a significant difference between a stable CCyR and MMR over time. The longer a stable CCyR is maintained (and it seems to be that Robs is stable over 2 years?)the risk of progression decreases accordingly.

Don't be disappointed, stable CCyR is a great place to be.
I am sure Dr. Smith will reassure you. However, you say that Rob has only been taking nilotinib for 6 months, the pcr's could very well improve over time.

best wishes,
Sandy

Hi Sal,
I switched to Nilotinib 18 months ago, after 6 and half years on gleevec. My last PCR was ZERO ! It has been a long hard road since diagnosis in 2001, but I have got there. Tell Rob to keep on hoping, it might be just round the corner lurking for his next PCR !!!

ATB
Pennie

Hi Sal,

Maintaining CCR for a couple of years is as good achieving MMR.

These are not my words but the words of Dr. Druker.

I am always upset when doctors push their patients by increasing doses or changing medication to get the patient to PCRU. I wish they would read the literature to see that it is not necessary.

Here is Dr. Druker on the subject:

DR. DRUKER: As I indicated, certainly somebody who reaches the major molecular response
or that 3-log reduction, their risk of disease progression at five years to
accelerated phase or blast crisis is zero. So you can almost immediately take a deep breath of relief.

As far as the complete cytogenetic response, once you reach that, the risk of
disease progression at five years is about 3%. But if you maintain that for a
couple of years, it’s less than a half percent.

So reaching a complete cytogenetic response, I’d take at least three-quarters of a breath of relief and if you maintain it for a couple of years, I’d view people as pretty much being in an incredibly good place.

What I tell my patients is even if I’m wrong about these data, we still have two other drugs. So my view is that not only do the data look incredibly good, and the future look incredibly bright, but we also have a safety net.

Thanks everyone for your quick and encouraging replies. We both feel much better now we have a greater understanding of what a great place CCR is to be.Rob's previous drs have always given the impression that PCRu is the only goal. Reading Dr Drukers expert words was really helpful. It was great to hear that even turtles can reach PCRu with perseverence - thanks Pennie.
Looking forward to meeting you all in Nottingham.
Sal