8 replies to this topic

[cometbro]

Hello, just curious if anybody knows the fastest CMR on record.  I've been on Tasigna for about 4 months and on the blood test last month I was told I was in MMR.

Is it that for most people, from MMR to CMR it takes longer than from CyR to MMR?

I'm just wondering if I might be hanging on to MMR for a while before I even see (hopefully) a CMR.

Background : 30 yr old male, athletic and healthy (other than CML), I was diagnosed with 209,000 WBC, 2.5% blasts in the middle of October 2010 with random shortness of breath / lightheaded/headachy feeling.  Right now i'm just dealing with the side effects of Tasigna (dry skin - can cut easily, occasional random headache spurts, lately some sort of heartburn type of feeling, and of course itchy scalp).

I'm hoping it continues to go down, because one day I hope to stop taking pills (im sure we all do).

[GerryL]

Congratulations on achieving MMR.

[cyclejoy]

I am really a newbie, just dx in January 2011.  I thought we all had to be on pills for life with this? Does anyone ever get off them?  Also wondering, what does CMR and MMR mean? Thanks!

[Trey]

Everyone is different.  Six months is considered lightning quick.  Some have self reported CMR in under 6 months, but there are many variables that may make that questionable due to PCR testing errors and variations.  Any CMR in under one year is extremely outstanding.

[cometbro]

Thanks GerryL, I hope it continues to improve.

cyclejoy, the original plan IS to be on pills for life unfortunately.  Im hoping, since i'm reading about people who, in careful monitoring, stopped taking medication after reaching CMR, that I can be part of that group who tries it or hopefully goes for some sort of vaccination trial.  There have been mixed results with people that reach CMR and stop taking medication.  The leukemia comes back in many of them so it is a risk and its why it is said that we have to take it for life as of now.

CMR (complete molecular response) is the same as PCRU (PCR undetected), which means no current test can detect it.  MMR (major molecular response) is when it is still detected, but to a very small degree.  Type in those acronyms in the search bar in this website and you'll see a lot of discussions on it.  It takes a while to sink in because it feels like a lot of acronyms, but there are not that many, and you'll only care about a few anyway.

Trey, thanks for the response.  It's good to know what an outstanding time frame to have CMR is.

I'm wondering, if 2 people reach the same MMR number, and both stop taking their medications at the exact same time, will the leukemia rate progress equally for both of them?  Will they both have the same time frame to live? (it seems i'm obsessed with stopping taking medication).

WHAT FACTORS WILL MAKE ONE LIVE LONGER THAN THE OTHER IF THE MEDICATION IS STOPPED AT THE SAME TIME?....and could we use this to determine how and why some people respond better to the medication or if having a certain blood type, diet, or something makes a difference.

[GerryL]

Hi Cometbro,

That is the million dollar question. I'm not sure if Tasigna and Sprycel people were part of that trial - Trey might know the answer.

[PhilB]

Hi Cometbro,

Congratulations on the MMR.  You really should be concentrating on celebrating that rather than worrying about CMR as MMR is the response level with the real clinical significance.  It would be great to be one of the minority who do make CMR, but it's certainly not anything to get hung up on - and nor is stopping treatment unless you suffer really badly with side effects.

As to your question on speed of progression if you stop taking the drugs, you can no more say that 2 people starting from exactly the same response level would progrees at exactly the same speed than you could ay that 2 people of the same age catching chicken pox on the same day would get the same number of spots.

[cyclejoy]

Thank you so much for the clarification, CometBro...very helpful!

[cometbro]

No problem cyclejoy, I understand where you're coming from.  Although we read these acronyms and definitions on websites, it REALLY doesn't sink in until it applies to you and YOU ask these questions.  It's like knowing about an illness from reading it, but then going to the doctor and have HIM explain it to you.  You feel more assured when he is explaining it to you since he is coming from a position of authority and background with it.  I feel asking questions on this forum and have someone explain it to you gives you much more assurance than just reading it from a website.

Although I can regurgitate some acronyms and information now (which I really couldn't about 2 months ago) and feel more assured of their meaning in relation to what we go through, I still don't feel fully comfortable in what i'm talking about but am learning by asking and reading, little by little.  I'm sure in time we'll be experts in this.

Hey PhilB, thanks.  I understand your analogy, it makes sense with the leukemia.  I guess like GerryL said, that is the million dollar question.  Damn, it would all be so easy if everybody responded the same to things like this!