I was diagnosed in later September and started Tasigna 600mg. Early side effects included headache, fatigue, cough, various GI issues, elevated glucose, bilirubin and ALT - none of these was serious and all have resolved except glucose (hovering around 115) and GI, although this latter issue is much better than it was. Worse initial issue was skin cancer - see my post Skin Cancer - 7 and counting in 4 months. In late February/early March, I had a horrible bout of mouth ulcers, followed by swollen salivary glands, followed by less severe ulcers, followed by a second episode of swollen salivary glands, then another round of even less severe ulcers, a third and so far final episode of swollen salivary glands. No more ulcers, but continuing dry mouth which seems to be very slowly improving. Even has a neck CT scan to rule out salivary stones or a tumor which was negative. So even though my oncologist at Mayo Clinic isn't convinced this was caused by the medicine, I certainly am.
Now for the good news - my leukemia responded very quickly to the Tasigna. I was MMR in 3 months and .006% IS on March 10. The March 10 PCR was prompted by me approaching my oncologist about reducing my dose to see if that would help reduce the incidence of new skin lesions. He said absolutely no way and I said it was the only option that I would consider because I was not ready to switch medicine yet. So he reluctantly agreed and tested me immediately on March 10 and then again on April 5, when PCR showed <.003% IS, so somewhere between 4.5 and 5.0 log or about as close to undetectable as you can get while still being positive. Since the dose reduction, GI issues have improved even more, mouth issues have improved and continue to do so, and most importantly, incidence of new skin lesions has dropped significantly (also likely contributing to this is an improving immune system and a daily regimen of 1000 mg of Niacinamide).
I believe that we are all different - some people need more TKI and others less to achieve and maintain MMR and beyond. I believe I am one of those who needs less and desperately want to try further dose reduction and do not at all mind more close monitoring. I would like to go from daily dose of 450 mg now to 400mg, then 350 mg, then 300mg, then 200mg, then 150mg over the next 2 years or so. Unfortunatley, my oncologist is old school and says that further dose reduction is not possible until there is at least five years of clinical data from dose reduction trials like DESTINY. He would allow me to stop if I meet the STOP trial criteria (3 years of therapy and 2 years of PCRU). While I would love to be able to stop someday, I think it makes much more sense to gradually reduce in an effort to find the threshold level of medicine that keeps me below MMR while minimizing short and long term side effects.
I feel so strongly about further dose reduction now or soon that I have a consultation with Baptist MD Anderson here in Jacksonville FL on May 3rd to see if they are more open to this than my Mayo oncologist. We will see what happens. Dr. Cortes, who heads up MD Anderson's CML program in Houston Texas is a big believer in threshold level dose and regularly starts many of his patients on less than full dose and then either increases or decreases based on response. I think this approach is the new frontier in CML treatment and one that is logical and safe if properly monitored.
The world of CML is full of patients and progressive oncologists who are trying dose reduction and it is working for many. The forums at
are full of these types of stories, so take a look. Good luck whatever you decide. It is your disease and your body and your life.