I have not posted much in recent months but have been following all the posts. I just wanted to take a moment to say my waiting game begins again......... Just had my bloodwork done for my next appt. My last 2 PCRs have shown increases so please say a prayer that my numbers have started to go down again. I am currently at 21 months since dx and feeling very nervous about my progress. The last few weeks I have been feeling really tired - more so than normal. My Gleevec rash is back with a vengenance. I am hoping the fatigue is due to Gleevec doing what it needs to in order to bring my numbers down. Either that or maybe I just need iron again. After my last appt when the onc told me the PCR number was up again (not a full log from its lowest point ever) I told him I thought I needed a drug switch and a mutation test. He said that since it wasn't a full log yet it was to early to tell if it was Gleevec resistance and the guidelines didn't call for a mutation test yet. He said after this round of blood work if the numbers increased again he would consider a drug switch. I am fully preparing myself to demand a mutation test and a drug switch if my numbers go up again. Am I right to make that demand? Anyway, please say some prayers for me - I am trying to remain positive and not get too stressed but my numbers have been climbing since July.
dx 3/09 G400 since