13 replies to this topic

[Mayra]

Back in December  when I was first diagnosed the lab scale indicated that I was at 3% based ion their lab scale not international . Well they just called with the results and now the lab uses international.  They told me I was at 6%.  The lab did not list a comparison to the old scores.  I'm so depressed and confused.  Does this mean that the medicine is not working if I'm at 6% and I started with 3% on their scale?   Please help!

[Ray99]

International scale starts at 100% based on the average.  This means that your PCR goes from 100% to 6% since December.  That is a very good response.

[Mayra]

I just got a call from my Dr. and it turns out that the lab ran the test the old way but failed to report it on the lab result sheet. 

New scores:

                 Lab Standard.              International

12/12                3%.                           Not Done

2/13                  .37%.                             6.29 %

So that would indicate that under the lab standard I had a one log reduction right?

So why is the international scale percentage so much higher?

I will celebrate the little victories. This is a good thing right?  It means the meds are working!!!

Thanks for everyone's support and encouragement!!

Mayra

[Ray99]

You are correct.  You have approximately one log reduction in two months using either standards (3% to 0.37% or 100% to 6%).  That is a fantastic response.  It is time to celebrate a little.

[Trey]

There are two types of log reduction measurements, individual and averaged.  Your individual log reduction since diagnosis is about 1 log.  Your International Scale (an averaged log reduction) is more than that.  The reason is likely that you started with a lower leukemic count than "average".  These PCR log reduction measurements are a bit of fuzzy science, so they are not worthy of over-thinking them.  You are making good progress. 

[GerryL]

Hi Mayra

This might help with the international scale http://cmlsociety.or...Session-BMS.pdf

Quantifying Molecular Response

Log Reduction               International Scale               Response

0                                      100%                                    Baseline

1                                       10%                                     CHR

2                                        1%                                      CCyR

>3                                   <0.1%                                   MMR

>4or4.5 or 5.0               <0.01%                                 CMR

 

Log Reduction                  International Scale                   Response                           Response Time Frame

0                                        100%                                         Baseline                              Pts. Status at Dx

1                                          10%                                         CHR                                     3 months

2                                             1%                                        CCyR                                  12 months

?3                                         ?0.1%                                    MMR                                    18 months

>4 or 4.5 or 5.0                   ?0.01%                                  CMR                                     ??????

[Mayra]

Gerry, thanks for that link!

So would it be safe to say that I'm at CCYR or is it CHR? Or you can't tell because the first test was done with lab scale and not international.

   So happy tonight! Feeling blessed that the meds are working!!

Mayra

[Barb@Anderson]

Gerry L, in reading all these numbers and scales, I am getting concerned.  Last july at 14 months my lab was point 3 and in Novenber it had gone to 5.0 and in Feb it was 5.6.  Does this mean that my Gleevec has stopped working?  My oncologist mentiond changing meds but I thought if I upped my dosage on Gleevec that it would go back down.  Now after seeing this, I'm inclined to think I was wrong and he was right in his suggestion.  Now I'm taking 200 mg Gleevec 4 days and 400 mg 3 days.  I don't feel like I did a couple months ago.  Now I am so tired, I can barely get up and fix me somthing to eat.   Last Fall I was helping my brother remodel my grandparents house and painting and had energy.  Am I reading more into this than I should or should I contact my dr and request to be changed?  It's really scaring me now. 

[jjg]

There seems to be a number of leading hematologists who are now recommending 2nd generation TKIs as front line treatment (when available, which obviously wasn't the case for all of us). So I wouldn't hang back on switching, particularly as it seems gleevec isn't doing a great job on your leukemia but it is doing a nasty job on your quality of life. I was on an increased dose of gleevec for a while, higher than what you are on but relatively speaking a similar % increase. I had decent energy on 600mg but increasing to 800mg was a life changer and not in a good way. It took about 2 weeks before the higher dose kicked my butt.

[GerryL]

Hi Mayra,

I didn't get a baseline with my initial diagnosis, for some reason both my BMBs failed to give a PCR level, so don't be too concerned about not getting that info. It also helped that my doc told me when I reached each stage - I think trying to work out log reductions in the initial stages would have done my head in. LOL

You're at 6.29% on the International scale which means you have achieved CHR and are on your way to CCyR at 3 months. A good reason to celebrate.

[GerryL]

Hi Barb,

If it was me I'd change to a 2nd generation TKI straight away.

[Trey]

Barb,

You have previously reported that you are on half-dose due to side effects.  That is the reason your PCR is not dropping.  You need to take more drug to see your PCR regain a downward path, or else change to another drug. 

http://community.lls.org/thread/19185

[Barb@Anderson]

Thanks Trey, you are a wealth of knowledge for those of us who are not inclined to understand the Cml therapy.  I am going to give it a couple of weeks doing he dosage he prescribed and if I don't feel any better by that time, I am calling him to change to another drug.  In the meantime while waiting to be approved for the patient assistance on a new drug, I will have to continue the Gleevec since I have it on and and cannot afford to pay a copay for the new drug until I have assistance.  Thanks to you and all the others with the helpful advise..  Before the recent change in the PCR, I had trusted my dr to make right decision about my CML but now I am reading and studying everything I can get about the drugs and what to expect at different intervals.  It has been an eye opener for me and that's a fact.  thanks again, Barb 

[GerryL]

Hi Barb,

My current doc told me when during one of our earlier discussions about lowering Gleevec dosages that you need to keep hitting it hard. I eventually did get a dosage reduction, but that was only after I had a quick response to Gleevec and had been PCRU/CMR for over a year.

Keep reading (though make sure it is current info) and asking questions, it does help to make you feel a bit more in control of things.