44 replies to this topic

[TeddyB]

International Scale:

          BCR-ABL1/ABL1              BCR-ABL/GUS

04.11.12     76%                         21%

06.14.12     17%                         10%

07.26.12     3%                           3%

10.24.12     0.10%                         0.08%

From what i think i know, this seems like a good response on 400mg Gleevec, right?

The letter also states that the tests on the last pcr were done 2 days after blood draw instead of 1 day, should this be a problem in regards to the results?

I HOPE NOT!!!!!!!

Does this mean im MMR?

[Trey]

The results show MMR, but the two days issue makes the result less certain.  48 hours is at max time limit without freezing, and may not be as accurate as you would want.  So it would be best to see a two PCR trend.  But your overall trend line is very good, so you are responding well. 

It is interesting to see that your PCRs are done using two separate housekeeping (control) genes, both ABL1 and GUS.  It is especially interesting to see that the higher the leukemic load, the wider the variance.  The first one was  76% vs 21% and the second was 17% vs 10%.  Both significant differences. 

[TeddyB]

I took the blood test wed at 12:30, and the blood was analysed Friday at 10:12, so it is within 48 hours at least. (45Hours and 42Minutes)

Hevertheless, im going to do a happy dance today

[cam_kris]

YAY TEDDYB!!!!!!!!!!!!!!!!!!!

that is Awesome!!!!!  I too hope that the blood test were ok but  you know what, absolutely do the happy dance!!  I am doing it with you!!  That is so cool!!
I am waiting to hear from my ONC.

the results i received was not clear to me.  I did ask Trey and he gave me a couple of questions to ask my Dr, so waiting to hear back.

When I was at the Dr office he gave me my results for july!!?? 

the 6 months were not in yet for the BCR-ABL  

then the nurse called me and said that the fish test was positive but he did say that i was CCR at 6 months and that i was 0.08  but didnt explain.  so waiting for those results, I too am hoping I am where you are at!!!

in July he said i achieved Molecular response amt of BCR-ABL with percentage 1.41%

so i too am thinking that the 0.08% is MMR

A Person can hope anyway!! 

will let you know as soon as i find out!!!  Take care!!

[LivingWellWithCML]

That is interesting re: the two housekeeping genes, as well as the variances.  I like how concise your test results are presented ... also love the fact that you're able to know how long your blood sat before running the test.  All of this stuff I have strived to attain at Winship in Atlanta, but have yet to get answers to ... all I know is that they run my tests on-site and they are on IS -- both considered positives in my book.  And last but not least, congrats on the quick molecular response to Gleevec!  Your chances of continuing on Gleevec are very good given these results.  Definitely do a super happy dance.

I just did an 18-month re-test of my PCR yesterday, so I'm hoping to stay or decrease from 0.1% IS ... just want to at least hold an MMR on Gleevec 400mg as I approach the 2-year point in treatment.  I'm controlling what I can control (daily dose w/ breakfast), so the rest is out of my hands unfortunately (was PCR undetectable at 12 months, 0.04% IS at 15 months, then 0.1% around 18 months, which freaked me out and I pressed for a 6-week re-test).  They are also running FISH just in case.  Amazing how one can look and feel completely healthy, yet my fate lives in numbers on a sheet of paper.  Stress and anxiety reigns ......... but I have gotten a positive jolt by seeing your great results.  So thank you, and keep up the great response, Teddy!

[TeddyB]

Trey, cam_kris and Dan. Thank you all so much for your responses, it really means a lot to me.

Everyone here on this forum has been so helpful getting through this roller coaster ride with me.

Trey: Yes now that you mention it, it is kind of interesting, but the most important thing for me right now is the downward trend

The result sheet also mentions a "lower detection limit" (that`s the best translation i could do so maybe you can make sense of it)

Which reads the following for each result:

          BCR-ABL1/ABL1              BCR-ABL/GUS          "Lower Detection Limit"

04.11.12     76%                              21%                              0,001

06.14.12     17%                              10%                              0,003

07.26.12     3%                                3%                                0,001

10.24.12     0.10%                            0.08%                           0,038 <Less than 5 copies BCR-ABL

Is this the lowest possible bcr-abl detection possible on those single tests? Since the last one is a bit high, maybe that is because of the possibly "degraded" blood quality or other factors during the pcr testing, and they use that as a kind of compensation? (Under 0,001 would be considered undetectable on the first test, and 0,0038 would be considered undetectable on the last test)

cam_kris: 0.08% sounds a lot like MMR to me, i will keep my fingers, arms and legs crossed for you, and i will check in on how you are doing when you get confirmation

Dan: You have inspired me throughout this journey with all your positive posts, and im certain you will continue to do so in the future as well. THANK YOU! I have been following your progress, and based on the results you have gotten so far, i am confident you will have a continued good response on Gleevec. I know those numbers control our lives in a major way, but until your next test, i couldnt see much wrong with your current numbers, except on the last 2 tests which are both using IS, but as others have pointed out to you its not a trend yet so keep the faith, you will probably be just fine I do however understand your anxiety awaiting your next pcr results and i will keep you in my thoughts.

For now i will continue my "lifestyle" with my (almost) daily walks, and moderate intake of red wine

I too Dan, have been taking my G with breakfast, and ive eaten the exact same breakfast for the last 6 months, yikes.

(2 slices of bread with goat cheese+strawberry jam, with a small glass of apple juice)

Being a man, its hard to admit, but today was actually the first time i cried after getting CML, a cry of relief and of a feeling that i would probably get to see my kids grow up.

Anyway, have a good election today, may the best candidate win

[GerryL]

Hi TeddyB,

Congratulations on your results - just goes to show that for some of us Gleevec is a great drug (apart from some of the side effects).

[Trey]

Teddy,

The "lower detection limit" is just boilerplate info and does not apply to your individual results, just to the overall sensitivity of the test itself.  Odd that they try to make the numbers sound so precise.  Here in the US we call that "measuring with a micrometer and cutting with a meat ax". 

[Tedsey]

Thanks for reporting the good news!  Glad to hear things are going in the right direction!

All the best,

Tedsey

[TeddyB]

As always, thanks for explaining Trey.

What do you think the margin of error on my last test was, given that it was almost 46h old before testing?

Im thinking that if they didnt think they could get somewhat good results from it, they would have skipped testing it?

[TeddyB]

Thank you GerryL

Indeed, i just hope my skin stays on me for a while longer

[TeddyB]

Thank you Tedsey

[Ray99]

Teddy,

   Congratulation to your excellent results.  I am so happy for you.

[TeddyB]

Thank you Ray

I saw in your thread that your results were slightly up on your last pcr, but as the others pointed out you should be just fine.

Its so true what Dan said, that those numbers control our lives to a great extent, but all in all, reaching and keeping ccyr is probably the most important milestone, and one that will let us stay on this strange blue planet a good while longer

[Trey]

Hard to say the error induced by the time.  The DNA starts to break down fairly soon after the blood draw, but accelerates as time goes on even when packed in ice.  The key is to try to keep the timing about the same for individual comparison purposes.  Some Oncs refuse to look at PCRs done after 36 hours, but that may be a bit extreme.  So the answer is that no one knows the error induced since there are too many variables. 

[TeddyB]

Thanks for the reply.

Since the limit is 48h and mine was a bit less than 46 hours, i will "look the other way" on this, and be happy with my 0.1% result

Ill just try not to be to upset if the next test is a bit above 0.1% or stable, but of course im hoping for a further decrease.

Teddy

[GerryL]

Hi TeddyB

What skin issues are you having?

[LivingWellWithCML]

Agreed Teddy - and thanks for the nice words.  If we find that my PCR is stable, then I really am going to "negotiate" an IS %-age level threshold when I would want to be notified by my hematologist ... because I think I'd be better off if I just knew that I was stable, around or beyond MMR, etc.  Then I get to keep living and stay healthy, so that's all that really matters.  I will not be any better off by watching the fluctuations and stressing out about it.

The real question will be -- what level should be considered a "notify patient" situation?  Anything greater than 1% IS, 2% IS?   I recently read a blog of a CML patient who's been on treatment for 6+ years, and this person is completely stable with ongoing PCR results like 0.03%, 0.1%, 0.01% 0.3%, 0.04%, etc etc -- just bouncing around between 0.3% and 0.01% ... and if I keep watching results like that every 3 months, I will personally go insane!  So I think it'd be much better just to trust the hematologist with the test results and let HIM watch these fluctuations and ONLY share the results with me if my PCR goes above ... say ..... 1.0%.  Dunno - but it's something I'm debating right now.  However, it all depends on what this next test results says.

The part that drives me nuts is that the test is probably already done, but because of red tape and delays, I won't actually get the results for at least another week.  Sheesh -

[Ray99]

Teddy and Dan,

   I agree with both of you.  I will not be too worry about the PCR numbers as long as they are below 0.5%IS.  But if it goes higher than 1.0%, then I would be worried.  That means loss of CCyR.  I will enjoy my life as much as I could as long as the numbers stay below the number I feel comfortable.

Ray