Posted 21 July 2014 - 05:21 PM
Did your doc not have a preference? I would like to think mine would have told me what he preferred. I would think 3 mos wont make a great difference, so I might be inclined to wait... but then again seeing the numbers going up has to be a bit upsetting.
You and your son both have CML? - what kind of odds are those! Im not sure I believe there isnt any environmental cause that is going on with this crappy disease. And they swear its no hereditary, too. Ugh. Just keep taking the pills and keep believing. Not much else we can do.
My doc said I could switch, but I had just got 3 months supply of Gleevec, So we are waiting for my 3 month check-up in August 22. I won't refill it this time till I see doc
Within a 6 month period 4 of us got diagnosed with CML, within 5 houses of my son and me. I do live in a heavy manufacturing city. Diesel engines, mufflers, crankshafts etc. But in 2008 we had a major flood, no telling what got into the river that day for chemicals.
My sister, 1200 miles away, had high platelets, was put on hydroxareah and alpurinal [sp], 8 yrs ago. She still takes the hydrox. Her doc said it could go into CML. Is it hereditary?
Well we have it and living with it every day.
1 2012 CML detected Started Gleevec 400 mg
In nov 2014 my pcr started to rise by Feb I stopped Gleevec and went onto
2 2015 Tasigna 600 mg/day
I have been PCRU for 2 years and stopped Tasigna 4 7 2017
5 8 2017 results 0.008
5 30 2017 results 0.028
6 30 2017 results 0.3, I have restarted the Tasigna because it went above 0.1
11 2011 CML detected Started Gleevec 400 mg
He went 2 1/2 years on gleevec and lost PCRU
Started Sprycel went PCRU for 2 years and stopped the Sprycel, went back for 3 month checkup and PCR was 8.0
He went back onto Sprycel and now is PCRU again
3 16 2017 results 0.008
6 1 2017 results 0.002