14 replies to this topic

[thomaskk]

I was diagnosed with CML in Nov 2013. ( FiSH 56% ). I am treated by a young CML specialist who is handling around 75 patients for last 10 years. How used the word "mild CML" at the time of explaining my Diagnosis and ordered Gleevec 400 .

My 3 months PCR was .8% ( IS) and 6 months .002% ( IS). It is a 4.5 log reduction ( am I correct ? PCRU is .001 %.? ) He wants future PCR testsL only in every 6 months. When I requested for another PCR test after 3 months , he told me that it is unnecessary at this level and slight variation is always expected and the same May cause unwanted concerns and worries.

Should I consult another Doc to get a second opinion. I know first two years are very important . what are my chances of loosing response from this level ?


Please advise

Thomas

[gerry]

My blood tests became six monthly once I achieved MMR. But I know others in Aus who have three monthly tests even though they are PCRU, just depends on your doc. I think there are a number of people who would like your response.

[thomaskk]

Thanks gerry. I believe that you are on STIM trail at the moment . how are you doing ? Is there increase or decrease in side effects ? Hope we will be cured one day.

[Trey]

Your Onc's approach is understandable, although there is some residual risk.  Your speedy response suggests your chance of relapse is small, although the "safe zone" (my term, and a relative one at that) for minimal relapse risk also includes time, which is about 2 years after diagnosis.  The time element is due to the unknowns surrounding potential mutations in the BCR-ABL, most of which occur within two years of starting drug therapy if they are ever going to occur.  I do not want to overstate the relapse issue based on the time element, but it is a factor to some degree.

 

Because of this I would personally be more comfortable with 3 month PCRs through the first year regardless of results.  After that 6 month PCRs at your level (-4 log+) are reasonable.  But I doubt I would make it a big issue to get 3 month PCRs for your levels of response; it is just a matter of comfort level about the residual risks.  If it really bothers you, tell the Onc it is about your mental well being and that a 9 month PCR is important to you, if you believe it is.

[thomaskk]

Thanks Trey,

I think I will trust my doc and wait for 6 months . I need to train my mind on anxiety management

Trey, your comments means a lot to patients like me.

Thomas

[gerry]

Hi Thomas,

I'm just waiting on the latest blood test results, so far they have all been negative. I've been off the TKI now for around 8 months.

Head definitely felt clearer when I stopped, but I also didn't get the Gleevec fog until about 2 and a half years of taking it. Fluid retention took about 5 months to go. But I still seem to have muscle and joint issues, but my doc will tell you it is nothing to do with the Gleevec, it is caused by being middle aged. LOL

 

Your journey has been similar to mine, though your anxiety levels are a lot higher.

[thomaskk]

Thanks Gerry. You are right on my anxiety level. But it has reduced along with my pcr

Do share your result when you get it. I am keen on following your path

Thomas

[Trey]

PCR is not very accurate at the high levels of BCR-ABL.  Because of that I would prefer to have FISH done until CCyR is achieved.  Although your International Standard average log reduction might be considered slightly below average, your personal log reduction is -2 log, which would be considered very good for that timeframe.  I would be happy with your response since you started at such a high level (4 times the average at diagnosis).  Your Onc might do well to consider individualized response instead of average response levels.  Drug response must be related to where we each started, not just the averages.  You are going in the right direction and at a steady pace, so all is well.

[Trey]

Drug response is a relative thing, and as I said, one should consider the starting point, not just the average "goals" for treatment.  Overall, steady wins the race when it come to drug response.

 

You would seem to be a good candidate for increased dosage since you started at a high PCR level, and you also tolerate the drug well.  Seems like a good idea.  As for kinase mutations, no one knows who will have them, but a drug change normally overcomes that issue. 

[JPD]

I guess Im in the same boat - it gets a little discouraging seeing some people race to MMR & others are in the "slow and steady" group... and we'd all like to be in the former instead of the later.

 

My 6 month PCR was 12.5%

My 9 month PCR was 3.5%

 

I have no idea my numbers at Dx, but Im sure it was pretty high... as my WBC was over 300k.  It took me a few months to get on a stable dosage of Tasigna (300mg) because of too low blood counts, I had to take it once a day for a while instead of the normal 2x.  I just wanna know that its working... I do pretty well with the anxiety, but ocassionaly the monkey climbs on my back and I get myself pretty worked up.  It just sucks sometimes.  I just keep telling myself "take the pills, live your life" and hopefully before too long we'll have something closer to a "cure"