Just got back from Onc and received ambiguous news on my latest test results. Trying to keep my head clear but really frustrated.
Since I moved to 50mg of Sprycel I have been doing monthly PCR. After last result I decided to stop calling for results, I figured I would just see Dr in a month and if anything happened they would call me (note for future reference - they won't). When Dr came in I was told blood counts were good, we discussed side effects, which have been manageable although certainly still there. I asked about PCR and told "still negative". As I was leaving I asked for a copy of the test results at front desk and they printed and gave me results from March, I explained that I wanted results from April. They initially told me there weren't any but kept looking. After about 10 minutes they found them and handed them to me, the first line says
Test Results: POSITIVE: BCR-ABL1 transcripts were detected.
It then went on to report a number of BCR-ABL1 ratio: 0.036%!
I asked to see the doctor again. He apologized and said he had not seen this report that he saw the results in the folder from March that showed negative. He read the report and said there were a few things I needed to understand. He said this was not from the same lab the last few reports were from. He said they switched to their own lab and we are now back to non-IS results. The notes on the report state that Based on an initial comparison with IS results this result should be "around 0.01% IS or lower - or over 4 log reduction. Because of differences in lab results this should not be considered an increase in BCR-ABL"
I know my post will get censored if use bad language but I am so (fill in the blank) frustrated right now.
I hate this (fill in the blank) PCR test.
So now I have to sit here and wonder if anything has changed at all or not. Is 50mg of Sprycel not effective or am I where I always was but this test is more sensitive? Could it be a false positive? I hate not having IS comparison, they seemed to do a rough estimate but before I was IS negative now I'm supposedly "around" IS .01% If I compare these numbers to my old lab results from a different lab that were non-IS it looks like I have relapsed. I am not going to let myself go there given the notations and the fact I know you can't compare, but I hate this damn test. Now I need to wait two weeks to get the results of today's draw and see if the number goes up down or side ways. Dr said he is not going to change anything yet, I should stay at 50mg and wait and see. Grrrr I want to smash something right now.
To make my stress level even more intense they also drew blood for my PSA today. It has been 6 months since the last one and if this test result comes back elevated then good chance I have prostate cancer and have to go for biopsy. Waiting on these test results is going to make me insane.
I am so sick of being sick.
Oh yeah and after Dr appt I got back in my car and my car stereo died. The slight enjoyment I get from listening to the radio as a distraction while I'm in my car is gone.
"Reality continues to ruin my life"