In honor of September being Blood Cancer Awareness Month, I'm sharing my story of living with leukemia. The WHOLE story.
Part 3
When last we saw this intrepid blogger, she wan in the office of an oncologist, having just been informed she tested positive for Philadelphia + Chronic Mylogenous (or Myeloid) Leukemia.
And I was scared and angry. At that point, mostly scared. I started crying, not full out sobs and wailing, but tears and sniffs, anyway.
Most people aren't comfortable with other people's tears. Not even medical professionals who's job sometimes involves giving people bad news or helping them cope with it. My doctor, however, took my and and said, "There's no reason to be scared. It's very treatable." And we scheduled me for a bone marrow biopsy to confirm the blood test results. I was given a booklet from the Leukemia Lymphoma Society and sent on my way.
I'm the kind of person who knows a little about a lot of things. So it was a challenge to read and understand what was going on with my rebellious blood cells.
There are two basic types of leukemia, acute and chronic. Acute, of course, progresses quickly. I've talked to people who felt sick for a few weeks and got to the doctor just in time to be treated. Even a few more days delay would have been fatal. Chronic takes it's time. It can still progress to the fatal level but does so more lowly.
CML, though a rare form of cancer, is most common in the elderly, but can occur at any age. At this time there are about 23,500 people living with CML. Only about 2.9 percent of that are children or youth. In my age range, only about 2 in 100,00 people have it.
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| Thanks to the National Cancer Institute |
I'll spare you the details about the five different types of blood cells. Suffice it to say, they all come from stem cells. What happens with Ph+CML is chromosomes in the stem cells, for some reason still unverified, go whacko. Pieces break off the bottoms of the 9 and 22 and translocate. The little bit left of 22 and the little bit of 9 that attached to it is called the Philadelphia Chromosome because it was discovered by researchers at the U of Penn in Philly. This is the cause of CML.
So the resulting new little mess directs the production of a mutant protein that causes an abnormal amount of white cells to be made. When left undetected and untreated over time, the mutant white cells don't mature enough to do their job and don't die off normally, leaving an overabundance of useless cells that crowd out healthy red cells.
Treatment for this kind of leukemia used to involve all the horrors of chemotherapy, and for people in advanced phases or those undergoing bone marrow or stem cell transplants, it still does. I, however, am LUCKY.
Lucky because in the early part of the last decade, a new therapy was approved that targets the production of the mutant protein with relatively minor side affects. I responded well and early and was declared to be in remission less than 9 months later. I have a good prognosis of surviving long enough for something else to kill me in my advancing age.
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| From Cancersymptomspage.com |
My treatment, Gleevec, is the first generation and was considered the magic bullet. Two slightly more advanced drugs have been developed, Tasigna and Sprycel. Each has side effects that are mostly manageable and often go away completely. Each have possible serious side effects as treatment continues. The general consensus among oncologists is for the patient to remain in treatment as long as possible. When stopping treatment after remission there is a 50/50 chance of the cancer returning in a more aggressive form.
Even though I'm not "cured," I've come to be satisfied with where I am. A bone marrow or stem cell transplant might cure me for good, but since I'm older and have other medical conditions, the rigor of chemo and totally destroying my immune system after I'm in remission might be deadly.
I was also lucky I had very good insurance at the time of diagnosis. Gleevec is over $6000 a month! Now I have access to a patient advocacy program that provides Gleevec for me at a minimal monthly cost.
If you would like more information about CML or any other type of blood cancer, the
Leukemia Lymphoma Society is the best place to go.
Tomorrow: How do I live with this? Am I still angry and scared?
By his good grace, I knew that when I was diagnosed. And even though I had my human doubts, I also had a new sense of well-being, that whatever happened would be okay. I didn't want to die--most people my age don't!--because at the same time I was discovering my writing gift and was excited by the possibilities. And I had lost a bunch of weight--over a hundred pounds all told from my highest. I had hope.
