9 replies to this topic

[August1]

Hi everyone,

Just got my latest test results and would appreciate feedback. I am 16 months into treatment and am currently on 100 mg of Sprycel.

FISH test showed the following result. I am not sure exactly how to interpret this.

200 interphase nuclei were scored following fluorescence in situ hybridization (FISH) with a D FISH probe specific for fusion of the ABL1 oncogene and BCR (breakpoint cluster region).

This result is within normal limits.

Interpretation: This result is within normal limits (< 1% of nuclei with fusion).

My PCR results over the last several tests are pretty concerning to me. (You'll note that I've had tests done at several different labs recently as I've been seeking additional opinions.) All are IS Scale

1 year (Quest) - 1.062%

14 months (Genoptix) - 0.9272%

15 months (Quest) - 0.608%

16 months (Johns Hopkins) - "The expression level of BCR-ABL transcripts is equivalent to 3.8 copies per 1,000 copies ABL (International Standard 0.8% BCR-ABL1 to ABL1 ratio).

So I assume that my last result is 0.8% although I'm confused how 3.8/1000 translates to 0.8. Would appreciate any feedback on this.

It just seems that I have had a much slower response than many people and I'm concerned about the last result. i was really hoping for a better response, but after four months on Sprycel I can only show an improvement of 0.2% in my PCR and my latest result seems to have increased.

Feedback is appreciated. Thanks.

[Tom1278]

You've had a complete cytogenic response by around 12 months, and your PCR is going downward toward MMR.  I think you are doing OK.  I wouldn't worry about the uptick from Hopkins -- it is probably a testing variation.  I'd get the 18 month at Quest and see where you stand.  Getting the recent tests from different labs makes it hard to compare them.

We are in a similar situation.  At 15 months (October 2013) my PCR was 0.71% and confirmed CCyR by BMB.  My 12 month results were kind of borderline for CCyR (0.8% FISH, 2.3% PCR).  I'm on Gleevec 400mg.

[Trey]

FISH is negative.  PCRs have been from different labs, so comparisons are less than optimal.  But your latest result is 3.8/1000 x 100 = .38% so is lower than your previous result.  The conversion to International Standard for the recent lab puts it at .8% which equates to just over 2 log reduction, consistent with CCyR (Negative FISH).  So all is well.  But try to have the PCRs done at the same lab for best comparisons.

[August1]

Tom and Trey,

Thanks for the feedback. I'm happy to see the CCyR but was really hoping for better PCR on Sprycel. I understand though that comparisons between labs can be difficult. Really curious about the various conversion factors to translate % to %IS and if those differ as well. All of my previous results were %IS so I'll have to wait to get the next Quest result in January.

Thanks again and wishing you both continued and lasting responses, and Happy Holidays!

Bill

[Trey]

Every lab has its own International Standard conversion factor.  The Johns Hopkins BCR-ABL PCR conversion factor would appear to be 25X from your result.

It is also possible that if the PCR was done in-house at JHU and processed quickly  the PCR result could be higher due to minimal degradation of the sample.  Fresher samples mean higher results. 

[August1]

True that.

The test was processed in house at JHU while my Genoptix test sample had to go from VA to CA for processing. I am hoping that's the cause for the difference as I know it's generally not a good thing to see increasing PCR when on Sprycel.

So at this point I plan on enjoying the holidays (I hope you all do as well) and will wait until my next PCR test in January.

Thanks again.

[August1]

Just had my latest results. I am CCyR (FISH is negative) and PCR is down to 0.552 IS after 17 months of treatment. All other counts are great although Glucose was mildly elevated.

So I'm responding but definitely more slowly than I'd like! At least the increase reported by Hopkins appears to be more related to lab differences and processing time. Going to try to improve diet and exercise and see if I can get better results in the next test.

Take care all,

[alexamay09]

I get mildly concerned when people express worry about progress. I've just had 15 month results back and.am .59 per cent PCR. I was quite happy with this progress. I am CCyR and was 1.25 per cent at 12 months. I am on 140mg sprycel daily and have been for 11 months. It sometimes scares me when people with really low percentages say they aren't doing as well as they would like. Wespahr, congratulations on your recent result. Its going in the right direction.

Alex

[Mayra]

Alex and Wes,

I'm in the same boat as both of you. I'm on Sprycel 100 mg.  Diagnosed 16 months ago.  My latest PCR is .29. I too was disappointed that I didn't hit  MMR by 12 months.  Praying the next 6 months will allow me to meet the big milestone.  My doctor isn't worried unless I loose CCYR.   I'm glad we have this board to compare experiences.  Although, I hope both of you reach MMR soon it's nice to know I'm not alone.  Here's hoping 2014 is our year!!!

[August1]

Hi Alex and Mayra,

Thank you both for the feedback! I'm definitely happy to see the trend is moving in the right direction (for all of us!). Very happy to be CCyR and certainly hoping to achieve MMR!

I agree that it is difficult as we constantly compare ourselves against an "ideal" response target. But as we know those milestones are very generic and based on some pretty sweeping and high-level statistical analysis. So we're measure our blood at the molecular level but measure "progress" with mile markers on the freeway.

I will say that all of my doctors (including a specialist at Hopkins) have been happy with this level of response. Could it be better? Sure. But I think just about everyone here would say they could have a "better" response and I've had feedback from several posters here that it took some time, years in some cases, to eventually reach CCyR or MMR or PCRU. I think the overall trend and hitting the target is the key but timing will vary for each of us.

Thanks again for offering your feedback. Great to hear from you and "Cheers" to a great 2014!

Bill