Yes Colleen. My hematologist/oncologist, Dr. Monte Martin (associated with Norton Cancer Center,) told me to go off the meds for 3 days which I did. On the fourth day I was supposed to go back to the 600 mg twice a day. However, during those 3 days my unbearable itchy scalp and back and red blotches of different sizes and types all over my body were rapidly disappearing ( I had managed things for 2 1/2 months but everything kept getting worse even though I was trying Benadryl and other anti-itch things the nurse was recommending.) The day I was supposed to call his nurse back and report how things were going was on the Friday before Labor Day - they are closed on Fridays so I couldn't report until the day after Labor Day.
In the meantime I couldn't stand the thought of things getting worse again so for those 4 days when I couldn't report, I took just 1/2 the dose - one 150 mg capsule in the morning and one in the evening. I reported back on Tuesday after Labor Day. The nurse said she would tell the doctor and get back with me which she did 2 days later. She said she told him and only got raised eyebrows. I asked her to ask him to be more specific and that I was going to continue to take 1/2 the prescribed dose until he said yes or no. He said ok until he sees me at my regular office visit Sept 26.
During the past 18 days of 1/2 dose I'm able to manage the itching and my skin is still improving. I have more energy and feel better than I've felt since before the diagnosis. I know it will take several month of blood work to see if the 1/2 dose is working.
On the Facebook worldwide CML chat site I posed the question of how many had their dose cut in half by their doctor due to unbearable or dangerous side effects and how that was going. Within 4 hours I had received over 75 responses - all from women, all saying yes, all saying either the disease had gone into MMR within a year or their numbers were rapidly improving and they were feeling much better. The moderator stopped the comments that same day even though they were still coming in.
I have long believed doctors are overdosing women. A 200 lb man and a 125 lb, 81 year old lady (me) should not be taking the same dosages. That's just common sense thinking to me.
So there is my epistle and my thinking and my personal 9 month journey so far! Oh, the first part of my journey I was on Sprycel for 5 months - 100 mg once a day. After 3 rounds of pleural effusion he took me off Sprycel, gave me a month rest and I then began the Tasigna.
Sincerely, Judy