Posted 16 November 2013 - 07:41 PM
Ben sorry for the late response. I work full time and this week has been toooooo busy!! I don't deal with the stress too well. Some days are better than others. I am the mother of a 13 year old and a 15 year old, and my husband's work schedule is worse than mine. Everyone tells me to rest. Sure. This past week I worked until 6 pm one night, and 8 pm two other nights. I still managed to get kids to basketball and manage the house. We are too young to just stop. My oncologist also says I am his youngest patient. So I am not sure if they even know what to do with me at times. My parents have even encouraged me to quit work, but then I remind them the actual cost of oral chemo and how important insurance is. I try to hold it together for my kids and husband but it has been rough at times. Sometimes you just have to sit and cry for a moment. My husband has not handled this well at all. He has lost 30 pounds and not slept much in the past year. I have not spent near enough time understanding all the terminology or researching or asking enough questions or reading this board. I know this is probably not the answer you were hoping for but it is the unfortunate truth :-)
We have taken our children to Disney a few times and it was great. You should do it!! We had a blast each time.
I had the dreadful headache with Sprycel but it went away after a week. I have not had a second BMB and I really never want to have another one. But if I do I will be OUT!!!!
I know we are close in age, Dx and treatment so please keep in touch. I know there is a way you can email me directly if you would like but I do not know how to tell you to do that.
Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)