14 replies to this topic

[thomaskk]

Hi

My first three months pcr is .867% IS on 400 mg Gleevec.  I have read on the gleevec website that if a patient achieves MMR in 12 months,then there is no chance (100%) of progression.  In this context, do you Recommend ME increasing to 600 mg To speed Up My Journey ...towards MMR

Thomas

[tazdad08]

Trey is far more educated on cml than almost all of us others combined, but I would not be comfortable believing that there is a 100% chance of any type of anything with cml drugs. We see so many posts of trials to go off TKI's and then others talking about building an immunity to TKI's if we take too low a dose, or that a break in drugs could allow immunity. It might be a good thing for you, just depends on the side effects and how your body is handling TKI's. We all look forward to good test results, but I would prefer a slow study drop and less side effects.  

[Trey]

The 100% figure came from tracking long term Gleevec patients in the original clinical trials.  For several years there were no progressions among the MMR patients.  But that was after about 7 years.  MMR is a very safe place to be, but there is always some very low residual risk of losing response to a drug.  But that does not mean progression will occur since there are other drugs.

You were diagnosed so early and with a relatively low WBC and PCR.  I do not see any reason to take more drug, but there is nothing wrong with taking more as long as it does not cause low blood counts.  I could not tolerate 600mg for very long since it drove my blood counts  too low.

[thomaskk]

Oops..are you saying that if some achieves MMR in 12 months , and no profession after 7 years ( as per the site http://www.gleevec.c...esponse-cml.jsp

Regards

[Trey]

Your link points to the IRIS study I referred to above.  So yes, the 7 year IRIS study showed 100% MMR maintenance for the large study group.  But you were asking about less than 7 years.  The first two years are the most critical.  But early MMR is a very good predictor of long term success.  However, slow and steady responders also do extremely well over the long term.  So we are only discussing a couple percentage points difference.  The good news about TKI drugs is that 90%+ do very well.

[thomaskk]

Ok . I was under the impression that if I manage to achieve MMR in first 12 months then I could be sure of no progression for next 7 years as long as I follow the treatment plan. No what I understand is if I achieve MMR in 12 months I will be progressing free 100 % after 7 years ( progression chances remains poitive upto 7 years ) ....rights

[Trey]

I realize you want certainty about no progression, but there is no 100% certainty.  The best chances of no progression are achieving MMR and passing the 2 year point since diagnosis.  Every year that passes and the deeper the response is even better.  But before the 2 year point there are residual risks from potential mutations which might appear, often inherent in the disease from the beginning.  After 2 years those residual risks of mutations decrease substantially.  The IRIS studies showed after 7 years that group (many of which had advanced disease levels before starting the IRIS trials) if they achieved MMR they did not have progression.  But there is never zero risk, just like with anything else in life. 

[thomaskk]

Thanks a lot Trey. .I understand the concept loud and clear.  If I increase the gleevec dosage to 600 gm for next 2 years can I reduce the chance of progression ? Can you suggest any other means for the same ? ....

Thanks

[PhilB]

Hi Thomas,

You have to be careful about cause and effect here.  I don't think there is much (if any) evidence that getting the numbers down to MMR faster actually causes you to have a better outcome.  The quick reduction is mush more an indication that a) your CML is responsive to treatment; and you tolerated it well enough to be able to stay on it and so get your results down.  It's a bit like noting that most bald men wear hats in the winter - that doesn't mean that wearing a hat makes your hair fall out.

[thomaskk]

Thanks Phil PhilB,

I am new to CML world. Diagnosed 4 months ago with 23000 wbc and 1.1 million platlets. On 400 mg Gleevec.  3 months pcr .876% IS. FISH negative. Trying to reach MMR with out progression risks..

I know that you are doing well. Congratulations

Thomas

[PhilB]

I'm glad to see that you are doing well too.  <1% at 3 months is a very nice response indeed and well on the way to MMR.  As Trey said, 90%+ do very well.  Of those who don't most either couldn't tolerate the drugs (which you seem to be okay with) or never got a result as good as yours already is.  Statistically that means that your personal odds are already much better than the '90% +' you started with.

[thomaskk]

Hello Trey,

I was quoting  the following paper from Dr Crotes.

http://m.jco.ascopub...t/30/3/223.full

It is true that result from one study group can be different to the other. I was quoting the finding that more than 2 log reduction guarantees MMR with out any resistance. 

Thanks Trey for your support

[thomaskk]

Sorry, what I meant was "more than 2 log reduction in first 3 months of gleevic"

As per Dr Crotes.

Thanks

Thomas

[paul_s]

Thomas,

Like you, I was slow to respond to Gleevec.  My local Onc(who I really like, but, has only 1 other CML patient) got concerned that after 18 months I hadn't reached MMR and switched me to Sprycel(I'm still responding slowly).  At another forum user's urging, I traveled to the west coast for an appt. with one of the true CML experts. When I told him about my seemingly slow progress and my Onc's concern, he and his nurse grinned and said "Sounds like they were listening to a drug rep(salesperson)". The CML Doc told me to pay attention to the "trend" of your PCR.  As long as it's downward, you're improving.

AFAIK (As Far As I Know) very few labs use the latest International Standards.  What we get is a 'Qualitative" report more than a 'Quantitative" measurement. The long-term 'trend' is the key.

Hope this helps a little.

[Trey]

My March 23rd input to you remains unchanged.