10 replies to this topic

[scuba]

I had a small uptick in my PCR this past test. I am still MMR and very close to PCRU, but I am no longer "undetectable" (or < 0.01%). 

 

Dr. Cortes suggested we keep going! We'll test in another month - no drug. He told me he sees this all of the time in his cessation patients. PCR's aren't that accurate at this low level and can bounce around below MMR quite a bit - some crossing above MMR only to fall back again.

 

The great news is that my CBC's, for the first time, are now in the normal range with red blood, hemoglobin and hematocrit all in the normal range. I haven't seen that in five years. Neutrophils are solid normal now. My myelosuppression is gone. And so is the anemia. 

 

If my PCR falls back next month, I go to two month testing (I had hoped to start that this month!). If there is another uptick, then my experiment comes to an end - but maybe not ... just depends on how much of an uptick. I am told my immune system is indeed responding - but for how long, we don't know. 

 

And so it goes.

[mikefromillinois]

Wishing you well Scuba.  Hang in there.

[pammartin]

Your spirits are up, you are having fun, and your PCR although not undetectable still acceptable.  Every day we do not have to take a TKI is an extra gift, because every day we have is already a gift. 

 

My PCR test results from Cleveland should be back this week.  Whatever they are, I have enjoyed the 15 months off TKI.

 

Keep that positive outlook.  Positive thoughts for all zeros for your next test. 

[Gail's]

It really is great news, scuba. A bump in the road but many positives in the normal CBC. You're being reasonable about this, and Dr Cortes supports you, so it's good! Congrats!

[scuba]

Up and downs - no worries. It's interesting that my doctor is with me on this now. He was against me stopping at first (because of my history and the fact I did not wait two years). When he saw that I had several months of PCRU, he changed his mind. He mentioned that the odds of progression will keep getting less if I remain where I am or go back down. He supports my nutrition approach with focus on my immune system and wishes he could do trials (Curcumin, in particular) - but no research money available for that.

 

What I would like to stress to everyone is that we have a wonderful fall back should cessation not work - we have our TKI's. And we have monthly "canary in the mine shaft" checks with PCR's. If next months PCR falls back, I'll be in a great place and my confidence that I am beating this will rise dramatically.

 

Thank you for all of your support. The adventure continues.

 

p.s. added Shiitake mushrooms to my diet on recommendation from another forum reader. 

http://www.ncbi.nlm....pubmed/25866155

 

A little garlic and sauteed, they taste fabulous.

[story]

We are pulling for you Scuba! The LAST study is using MMR as the point at which TKI therapy starts again. I think you are fortunate to have found an onc that supports your desire to stop the TKIs.  

[scuba]

We are pulling for you Scuba! The LAST study is using MMR as the point at which TKI therapy starts again. I think you are fortunate to have found an onc that supports your desire to stop the TKIs.  

 

Loss of MMR is also the threshold point for me in my personal 'trial'. Dr. Cortes is a scientist - data driven clinician. He sees a lot of patients from a diverse set of circumstances, disease, side effects profiles and research. He has an outstanding team of interns who work with him as well as other doctors. He feels there is a lot of data from which to form solid working hypothesis regarding CML and associated risks with regard to stopping therapy. He feels more patients could stop therapy and be successful than who actually do stop. People are afraid to stop (his words). He was surprised how often his patients would reject the opportunity to stop therapy (and stop side effects) when given his recommendation to try. The key is frequent monthly testing to catch a significant PCR increase (more than one log).

 

Disclaimer: No one should try what I am doing alone without their doctors support and monitoring.  I was ready to try this approach even though I was not two years PCRU. Stopping treatment can certainly cause undo stress and anxiety. In my case, I am just taking it one month at a time - hopefully two months at a time and feel I am in a good place currently.

[rcase13]

Wishing you the best. If you can beat this maybe I can.

Confused about the PCR test. You said below .01 is undetectable. I just had my 9 month PCR test and once again it came back .01%. The doctor said it isn't undetectable yet but it could be lower than .01% but anything above undetectable and .01% or less they report as .01%. As an example if I was .006 they would report it as .01%. Why on earth do they make it so complicated. Why can't they just tell me the number! All I know is I am <= to .01%.

Anyway just frustrated and you said above that anything below .01 is considered undetectable. Pulling hard for you. Good Luck.

[chriskuo]

rcase,

 

You may be confused about the concept of undetectable.  If they report a number, you are not undetectable.  If they cannot give you a number, you are undetectable.  Different labs have different sensitivities, so you blood could be run at 2 different labs and one could come back undetectable and the other with a number like .006 or .01.  A log reduction of 4.5 or greater is sometimes used as a short cut expression for undetectable.

 

 In addition to sensitivity, there are differences in your blood sample from test to test and variations in the accuracy of the test.  So you could be undetectable in one test and detectable in a test three months later, but there may not be any material difference in the results.  The trend or stable undetectable or stable MMR is what is most important.

[scuba]

Wishing you the best. If you can beat this maybe I can.

Confused about the PCR test. You said below .01 is undetectable. I just had my 9 month PCR test and once again it came back .01%. The doctor said it isn't undetectable yet but it could be lower than .01% but anything above undetectable and .01% or less they report as .01%. As an example if I was .006 they would report it as .01%. Why on earth do they make it so complicated. Why can't they just tell me the number! All I know is I am <= to .01%.

Anyway just frustrated and you said above that anything below .01 is considered undetectable. Pulling hard for you. Good Luck.

 

Rcase - Chris is correct. At M.D. Anderson, I had the pleasure to speak with the Pathologist who runs the lab where my PCR tests are done. He explained to me that any level (at M.D. Anderson only) that records less than 0.01, they either mark as "<0.01" or "undetected". The sensitivity of their PCR test is 0.01. Some doctors in the lab record it as <0.01 some write down "undetected". The third decimal place is noise. He mentioned that when they run calibration samples where a test vial has zero bcr-abl proteins they still can get readings (in the third decimal place). They know it's noise regarding the accuracy of the test.

 

In my case, I have been <0.01 for quite some time - until now, I am not < 0.01 any longer like I have been. i was told that I still could be, it's just the nature of the test error range (one half to one log). What they care about is log trend - which is a factor ten change in the number. If my PCR went from <0.01 to 0.1 - then there would be a concern. And then if climbed from 0.1 to 1.0 - I would say, I have lost MMR and CML is progressing. That would be a two log jump and that is very significant. The reading I received this week is in the noise variation of the test, so I was told - don't worry about it. And I am not ... for the most part. I'll need many many more tests like this one to prove to me that the variation in the results is my new normal at this low level and that my remission continues without the need for Sprycel. That's all I really care about - no drug for me.

 

Also - different labs conduct PCR testing differently. It's not quite standardized although they try to calibrate to the so-called International Standard. M.D. Anderson does not use the International Standard (I.S.) (why? - I have no idea) and their levels always report higher (by percent) than I.S. They are not comparable except roughly using a calibration scale. Because the 3rd decimal place is meaningless, once a patient achieves a <0.01 M.D.Anderson scale, it's noise. It's a great place to be - especially if its month after month. For six months I had that - and that's when I decided to test "cessation". For 5 months following cessation same result - until now. Still noise, I'm told - but we'll see. Next month will be a good indicator of whether I just experienced a bump in the road.

 

Trey has a good commentary/ summary on PCR testing and its vagaries, misconceptions and such. Perhaps Trey can point to where this has been written up in the past. I will be meeting the Pathologist who signs my PCR reports next test. I look forward to actually visiting the lab where these tests are done and actually seeing how the test is conducted.

[rcase13]

It seems like my lab just does things differently. Anything .01% or less but still detectable is always reported as .01%. They are on the IS standard and can detect down to 5 logs so not sure why they do things like this.