2 replies to this topic

[JoshLee]

Hey Everyone,

        I am in a little dilemma here. I work in Florida and play in an orchestra for a living, but I only work here about 8 months out of the year. The rest of the time, I spend in Wisconsin where I grew up. Because I am a resident of Wisconsin I still get treated there. So every three months, I fly home for testing and I get my CBC's done at Mt. Sinai here in Miami. I have an audition coming up in the middle of April and I am scheduled to go home in a week to have my 15 month PCR test done. I don't want to fly home and interrupt my preparation process, so do you all think it would be okay if I waited another month and a half to get my PCR done? I am supposed to have it done on March 21st, but would like to push it back to the second week in May. My PCR history is a bit confusing. At 6 months I had a 1.1 log reduction and then I had a stable pcr at 9 months and then I had a BMB showing that I was CCyR at 11 months and that the rest of my marrow was functioning properly. I had another flat PCR at this time. Since I reached CCyR, my onc. doesn't seem to frazzled by the PCRs and is kind of chalking it up to an inaccuracy of the test and the fact that I had a pretty high disease burden at dx. Do I know if these are valid reasons for a stable PCR? No? However, I did email Dr. Drucker and he told me that given my excellent cytogenetic response and a stable PCR I am in good shape. I don't want these tests to control my life, BUT I don't want to play with fire either. I love being alive and want to keep it that way. What do you think? Trey? Any others that I have had PCRs 4 months apart? Also, CBC's have been solid. I had one done a week ago and it was exactly the same as the one before....give or take a few platelets. Thanks for all your help. -Josh

[CallMeLucky]

I would say it is fine - if you are really concerned and want some peace of mind you could ask your Dr in Wisconsin to authorize a FISH test for you and do it through a local blood draw in FL with a Qwest lab or something like that.  The FISH does not need to be done at the same lab, it will either be positive for x amount of cells or it won't.  If the FISH is still negative then you are keeping in CCyR and know that are in good shape.

For the long term - you should discuss with your doctor the ability to get your blood drawn locally and either Fedex'd to the lab they use, or make the move to a national lab like Qwest.  You can't compare PCR results from two different labs to determine a change in status, but no one says you can't ever switch labs.  You just have to accept that you would be starting a new trend line.

[Trey]

Given your history, waiting another month for the PCR is not a big deal.  But Lucky had some good ideas, if you wanted to pursue those instead.