106 replies to this topic

[TeddyB]

Has your Oncologist mentioned trying to go off the drug?  50/50 chance you may never need to take it again.  

 

Nope she hasnt, but im getting a new onc in a few months, maybe she is more into the idea.

[TeddyB]

Wow, its been 4 years now since dx.

Starting now, only every 6 months monitoring of BCR-ABL.

Seems like i am "stuck" in good place at 0,01%

Hope you all are doing well

 

                 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%

01.15.13     0.014%                      0.01%

04.11.13     0.014%                      0.01%

07.16.13     0.032%                      0.03%

09.12.13     0.021%                      0,02%

12.04.13     0.013%                      0,01%

03.05.14     0.017%                0.02%

06.11.14     0.025%                0.02%

09.12.14     0.018%                0.02%

12.11.14     0.031%                0.03%

03.23.15     0,014%                X.XX%

15.06.15     0,013%                X.XX%

16.09.15     0,01%                  X,XX%

16.12.15     0.01%                  X.XX%

16.03.16     0.01%                  X.XX%

[Buzzm1]

Wow, its been 4 years now since dx.

Starting now, only every 6 months monitoring of BCR-ABL.

Seems like i am "stuck" in good place at 0,01%

Hope you all are doing well

 

                 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%

01.15.13     0.014%                      0.01%

04.11.13     0.014%                      0.01%

07.16.13     0.032%                      0.03%

09.12.13     0.021%                      0,02%

12.04.13     0.013%                      0,01%

03.05.14     0.017%                0.02%

06.11.14     0.025%                0.02%

09.12.14     0.018%                0.02%

12.11.14     0.031%                0.03%

03.23.15     0,014%                X.XX%

15.06.15     0,013%                X.XX%

16.09.15     0,01%                  X,XX%

16.12.15     0.01%                  X.XX%

16.03.16     0.01%                  X.XX%

TeddyB, the every six months testing is attractive; hoping more Oncs begin to lean in this direction; are you on a reduced dosage?

[gerry]

Teddy,
Do you think there is still possible movement downwards, but your lab results just keep taking it up to the closest reportable level of 0.01%?

[TeddyB]

TeddyB, the every six months testing is attractive; hoping more Oncs begin to lean in this direction; are you on a reduced dosage?

 

Buzzm1 i am still on 400mg, i doubt my new onc will allow me to reduce, but i havent talked to her about it yet. Not sure if i am ready myself yet, i just cant seem to go below 0,01%, but as long as it doesnt go up, i am happy.

 

Teddy,
Do you think there is still possible movement downwards, but your lab results just keep taking it up to the closest reportable level of 0.01%?

 

Hello gerry

 

Good question, i truly hope so, but the lab claims to be able to get readings down to a level of 0,001% from what i can understand, at least its what they call lowest detection limit, on my test documents. The lowest detection limit varies from test to test, highest being 0,006% and lowest being 0,001%.

I am using the same lab now as before onc change.

[gerry]

Still feels to me that they aren't reporting it. I would have thought there would be more fluctuation rather than an exact line.

[TeddyB]

Still feels to me that they aren't reporting it. I would have thought there would be more fluctuation rather than an exact line.

 

I hope that is the case.

[Trey]

There are two parts to the PCR ratio -- BCR-ABL and free ABL.  Free ABL is non-leukemic.  You may just have less free ABL than others, which can distort the ratio.  Many believe ABL is not the best housekeeping gene for PCRs.

[TeddyB]

There are two parts to the PCR ratio -- BCR-ABL and free ABL.  Free ABL is non-leukemic.  You may just have less free ABL than others, which can distort the ratio.  Many believe ABL is not the best housekeeping gene for PCRs.

 

Would be interesting to test at another lab, unfortunately i do not have that option. Maybe it would not make a difference, but still, it would be interesting

[Trey]

Here is a cheap place in Norway for PCR and FISH:

 

http://fishvetgroup.no/pcr-2/

 

 

 

 

 

 

 

 

(NOTE: that was a joke)

[TeddyB]

Here is a cheap place in Norway for PCR and FISH:

 

http://fishvetgroup.no/pcr-2/

 

 

 

 

 

 

 

 

(NOTE: that was a joke)

 

 

Both fish and pcr in one test? Well, this needs to be celebrated with some wine, after all its Saturday

 

At least we know the fish we eat are doing well, and they get their PCR results the next working day, which is more than i can say for us. (My last test i waited 5 weeks)

[TeddyB]

Hi everyone.

 

Got a letter from my onc in the mail today:

 

Molecular test of blood taken 10th of june:

 

BCR-ABL fusjonstranskript ikke påvist. Which can mean the following:

BCR-ABL fusion transcript not proven. (In addition to "proven", påvist can also mean "shown" or "pointed out")

 

The office is closed now, so i cant call her, but what does this mean? Dare i hope?

[TeddyB]

Okay, i searched through the Norwegian national CML guidelines real quick:

 

"For begrepet komplett molekylær remisjon (CMR) kreves at man ikke kan påvise transkript overhode"

 

It roughly translates to: To be in complete molecular remission (CMR) its mandatory that the transcript can not be proven/shown.

 

So i guess this means i have reached PCRU/CMR?

[gerry]

Congratulations teddy- time to start that Norwegian happy dance. :-)

[TeddyB]

Thanks Gerry, i took the test on a friday, so maybe thats why they could not find anything (if the test wasnt done until monday), but stil, im happy

[Melanie]

So happy for you Teddy! And to all those reporting such good results! Very encouraging!

[TeddyB]

So happy for you Teddy! And to all those reporting such good results! Very encouraging!

 

Thank you

 

I went down to my doctors office today and asked for a copy of the lab report.

 

It showed that the lowest detection limit on the pcr was 0,004%, so my PCR is theoretically somewhere between 0 and 0,004, which i think counts as a "big" step down from my previous result of 0,01, so YAY

[CallMeLucky]

Congrats!

[TeddyB]

You should go negative soon.  But a boost in dosage could help jump start that.

 

Better "late" than never

 

Congrats!

 

Thank you

[Trey]

How do you say "Yay" in Norwegian?