7 replies to this topic

[mdh54165]

How concerning is this? My PCR results over the last year are below.

3 months - 5.75%
6 months - 0.30%
9 months - 0.18%
12 months - 0.2%

Should I start thinking about a clinical trial? Switching drugs?

Onc has suggested increasing my dosage. Currently taking 80mg sprycel and he wants to increase it back to 100 mg.

Thank you.

[kat73]

Yikes, no! You're doing great!  No statistical significance between 0.18 and 0.2.  Many, many successful people on this site did not make MMR at 12 months.  Many, many successful people here have had plateaus, followed in a few months with a return to a downward trend.  The very real problem associated with higher doses of Sprycel is pleural effusion, which more than a few people get (up to 30%).  My advice is to stay the course at 80 mg and check the PCR again in 3 months and maybe again 3 months later before upping the dosage.  You are probably not eligible for any clinical trial since you've just started and you're having a successful response.  You also don't want to run through all the CML drugs quickly, but rather keep them in reserve if you ever have problems with your current drug later. 

[ROMO]

Low hanging fruit. The drug knocked out the easy stuff first.

The more elusive fruit will take more time. Mabey a long time.

It's the "Lowering Plateau." As your numbers go down they slow down.

This is because disease activity becomes tiny. It's in the molecular level now.

Tiny movements are not dangerous. Only a few bad guys left. But they are elusive.

Now you have to think about the drug and it's toxicity to your body as you will be 

taking it for a long time. Always work to take only what you need to stay healthy.

 

Romo

[r06ue1]

You are probably hitting the plateau, look at my sig and you'll understand.  

 

As long as you are not going above 1% you are fine, just be patient.  

 

 

[Silvertabby]

Slow and steady wins the race. I was diagnosed in September, 2013. I was at 11 percent at 3 months. My numbers were around .3 and .2 from about March, 2014 until December, 2014. In March, 2015 it was .159 I had a bit of a scare in June, 2015 when the test came back at .58 but the blood sample was suboptimal so they didn't think it was accurate. I finally reached MMR in September, 2015 - 2 years after diagnosis. For the past 2 years I have been at a plateau around .015 with 3 sporadic pcru results. I know it can be discouraging when the test results are not what we had hoped, but try not to let it get you down. Praying your numbers continue there downward trend for you.

[JoshLee]

Just wanted to chime in and say that it took me 4.5 years to hit MMR and another 2 to get to where I am now 0.03. I freaked out about every test worrying about the worst and it was scary, but I am still here. And for the first time EVER i waited for my Onc to call me instead of me calling him for results. It gets easier mentally to not "live and die" by these numbers.

[Jan0080]

I live close to my Onc. I have my blood drawn on a Monday and my quarterly visit is scheduled for the following Thursday or Friday. When we meet, we not only can discuss side effects but we have the latest results and can discuss those as well. I know that the "standard" is to have a blood draw and meet the Dr. at the same time but I want to talk about my hopeful progress rather than discuss the weather. Always have your blood drawn early in the week - accurate results require the blood to not sit around over a weekend.

[cmljax]

Kat is dead on correct - no difference between last 3 results as there is a +/- .5 log margin of error on most PCR tests. Too early to increase dose.  Your onc should know that your goal is to get to MMR and then start thinking about dose reduction.