I had a very high Sokol score, and almost 4.5 years later, I am still alive and have had a good response to dasatinib (another TKI). Like Trey said, I am not sure how reliable the Sokol is any more. It makes me think of how doctors analyzed bumps on patients heads long ago to diagnose illness. According to the Sokol score, I should be dead by now, but I am very much alive. Except the pressure of knowing I have this monster in my blood, my life is pretty much normal now.
I had no symptoms, but couldn't keep weight on for years. I saw 3 different doctors (numerous times) and none of them, in 2 years time, could find anything wrong with me. Since I am female, I was criticized for liking to be pencil thin and having an eating disorder. I had some abdominal discomfort before my yearly checkup one year. It turned out I had an enlarged spleen and liver and a WBC 180,000. So, the 3 doctors I had been running to for 2 years, failed me (an internist who specializes in preventive medicine, a gastroenterologist--I thought I had stomach cancer because it runs on my mother's side--and an OB/GYN). So, I very much understand your dismay. I had always been very healthy with excellent health habits. Either this disease is very hard to diagnose, or it is so rare, especially in your age group, (and mine still), doctors do not think of looking until it practically spits in their face, (meaning, doctors don't normally look until the disease shows itself without doubt). Thank goodness your CML is still CP.
I am very sorry to hear it took so long for you to be diagnosed. We put so much trust in our doctors. You will now enter a world where you will often see the fallibility of medical science, but there are also great successes, like TKIs. Just got to keep perspective as you gain a bit more knowledge about a subject you never thought you would ever learn (blood cancer). It is likely you will respond well to drug therapy and will continue on with your life much like you did before. Except with the knowledge of CML, there may be more emotional challenges than physical.
I am happy to hear you have few side effects. Please post about how you are doing and if you have any questions. This LLS board is full of kind and extremely knowledgeable people and some have been here for years. You have come to the best place.
I wish you an excellent response and quick healing, and of course, a long life.
Tedsey
P.S. My diagnosis and labs were done by a bunch of monkeys during a national holiday (except one hematology "fellow" was excellent, but was bumped by his superior who wasn't superior). I was locked into an oncology ward for a whole week (because of a flu epidemic) and was torn from my nursing baby and given a ton of useless tests and medication and given a grave prognosis by the lead oncologist. I won't go into the mistakes that were made during diagnosis and the incompetence following subsequent visits. It will just make me depressed. If I ever have to relive that, I know I will be in hell. But there are more people like we who doctors or pathology initially failed. Just make sure to find a good doctor you can trust and feel good with. It will be a long relationship. Nevertheless, what really counts is now and how you are doing now.
