Oncology (General Cancer)/Chronic Myelogenous Leukemia
QUESTION: Hello Dr. Higby, In Sept of 2011 I was diagnosed with CML. At the time, my leukocytes were at 100,000 and my myelocytes showed up on my CBC, which I understand are not supposed to happen unless one has leukemia. Yesterday, I was going through my files and sorting out years of medical records. I came across a blood test from 2008 that was very similar in numbers as the one that led to my CML diagnosis. It had 70,000 leukocytes and the myelocytes were showing up in the CBC just like the one from 2011. The doctor I saw at the time, was for a one time visit at an urgent care. I didn't return to him, nor did he follow up on the results. In retrospect, it would seem an oversight. But, that doesn't matter now. There are other blood tests that were done after the one in 2008 which didn't have the myelocytes and the leukocytes were normal. For several years, though I had very low lymphocytes which has always been attributed to my autoimmune conditions, sjogrens and erosiver oral lichen planus for which I often received prednisone. Between 2008 I had severe bone pain attributed to osteoarthritis and results of an internal hemipelvectomy from 40 years ago. I also had some pretty bad night sweats attributed to needing hormones due to complete hysterectomy. I was weak and exhausted a great deal of the time. I simply thought it was old age catching up on me. I'm 67. Since my CML has been treated and now regressed, those symptoms are gone. My question is this: Is it possible that I had CML in 2008 and it reversed itself before returning in 2011?
ANSWER: It is certainly possible that you had CML long before it was diagnosed, and the fact that your symptoms have gotten better adds to that possibility. One of the reasons we don't know much about the "prehistory" of CML in patients is that most of the time it is detected in people who have otherwise been healthy and have had no reason to get routine blood counts. Your story is unusual, but not unheard of. In fact, in the olden days before some of the modern treatments, the most we could hope from treatment was to keep the white blood cell count from rising to dangerous levels. We didn't really make much impact on survival. So some patients who were diagnosed were actually not treated, and during the first few months to years of observation, some did show rises and falls in their white blood cell counts. However, spontaneous "cures" did not seem to happen; usually the disease eventually progressed. From the olden days we also know that CML did occasionally respond to immunologic stimuli; A Dr. G. Sokal, in fact spent much of his career trying to control CML by immunologic means, with some success. Now, of course, we have remarkable treatments that seem to cure patients.
I might also point out that while many of your symptoms might have been CML related, some may have been due to your underlying other medical problems.
Lastly, I urge you to write a letter to the director of the clinic where you had a white cell count done in 2008, pointing out your subsequent history and requesting that he/she look into improving follow up for lab tests that were so out of the normal range. You will be doing other people (and the clinic) a favor.
---------- FOLLOW-UP ----------
QUESTION: Thank you, Dr. Higby, for thorough explanation! Another question please: During severe episodes of immune disorders, I received Imuran, which darn near killed me. I don't have the TPMT gene. Then, afterwards had 3 grams daily of Cellcept for two years, which totally cleared up immune problems and made me feel human again. I wonder if they might have contributed toward the possibility of my having the Leukemia. I read some about Dr. Sokal & his work with immunotherapy. Interestingly, I had the BCG vaccine in 1971 (from Dr. Graham, Buffalo, NY) to see if it would arrest my chondrosarcoma. It slowed it from yearly recurrence to every 4 years, then mets actually stopped growing. I understand it is possible BCG contributed to my immune problems.
I actually worked with Dr. Sokal many years ago, and I went through Roswell Park for my fellowship, stayed on several years as a faculty member. It is possible for BCG to have contributed to your immune problems. Hyperstimulation of the immune system seems to be behind several immune diseases. We have a new drug used to treat melanoma which actually works by inhibiting the cells which are responsible for turning off the immune system when it gets too vigorous; the side effects of this drug are disorders like lupus, rheumatoid arthritis, etc. Immuran is a drug which might have caused your CML and may have affected your immune system. It acts on the DNA of cells, and anything that does that can be "mutagenic" That being said, we haven't had any direct evidence that the specific chromosome rearrangement in CML is the consequence of something like immuran. That may be because of the hundreds of millions of possible genetic defects caused by something like this, most are not "consequential" -- that is, the cell dies; and those that are probably cause much more common problems like myelodysplasia. So it's possible that immuran may have played a role, but you'd have a hard time convincing a jury of that. We just don't have scientific evidence.