I was reminded this morning of my cancerversary by my CML buddy, Wanda. I had actually forgotten all about it, as I often do. Not to say that CML has disappeared from my life, it hasn't. In fact, last night my wife and I were working on our annual trip to Portland to meet with Dr. Druker.
The recent months caused a slight scare. I received my PCR test from Dana-Farber about 6 weeks ago. To my surprise, my numbers had increased about 10-fold. When you are used to dealing with logs and PCR test, 10-fold is a large jump. It was the highest number I had received in about 8 years. Needless to say, I was quite concerned and called my oncologist at Dana-Farber. He let me know that the laboratory had made some adjustments to their scaling and not to worry. He said he was receiving many similar calls.
Not thrilled with this answer, I contacted Diana at OHSU, who works with Dr. Druker. She said I could have my blood tested through their lab for comparison. Diana shipped me a kit and I sent off my blood. Last week, the results came back and were as low as they had ever been. Major Molecular Remission (MMR) still. Repeat in three months.
Why had the score changed so drastically at Dana? Apparently, until recently, the PCR test was not standardized. That is the reason that CML patients have to keep going back to the same lab, otherwise, they would have different results. Fortunately, over the past few years, there has been a standardization that has taken place using and international scale. Dana-Farber had switched to this several years ago, but apparently made another adjustment recently. For those of you who go to Dana-Farber for bloodwork, just be aware of this change and do not be so alarmed.
In reflecting on my 12 years, it is really hard to fathom this amount of time. I feel like I am a different person in many ways. Three Olympics have passed during that time. My kids are getting older and life moves forward.
While CML will always be present and a part of my life, it is wonderful that it no longer occupies a large section of my thoughts.
The recent months caused a slight scare. I received my PCR test from Dana-Farber about 6 weeks ago. To my surprise, my numbers had increased about 10-fold. When you are used to dealing with logs and PCR test, 10-fold is a large jump. It was the highest number I had received in about 8 years. Needless to say, I was quite concerned and called my oncologist at Dana-Farber. He let me know that the laboratory had made some adjustments to their scaling and not to worry. He said he was receiving many similar calls.
Not thrilled with this answer, I contacted Diana at OHSU, who works with Dr. Druker. She said I could have my blood tested through their lab for comparison. Diana shipped me a kit and I sent off my blood. Last week, the results came back and were as low as they had ever been. Major Molecular Remission (MMR) still. Repeat in three months.
Why had the score changed so drastically at Dana? Apparently, until recently, the PCR test was not standardized. That is the reason that CML patients have to keep going back to the same lab, otherwise, they would have different results. Fortunately, over the past few years, there has been a standardization that has taken place using and international scale. Dana-Farber had switched to this several years ago, but apparently made another adjustment recently. For those of you who go to Dana-Farber for bloodwork, just be aware of this change and do not be so alarmed.
In reflecting on my 12 years, it is really hard to fathom this amount of time. I feel like I am a different person in many ways. Three Olympics have passed during that time. My kids are getting older and life moves forward.
While CML will always be present and a part of my life, it is wonderful that it no longer occupies a large section of my thoughts.
