Thank you everyone for responding. Feels less like you are on an isolated island... there are no support groups in my area... so, I do appreciate your emails with encouragement and support.
I was glad to hear there are other medications. I gather this is a long journey... to figure out which drug and at what level... not one that can be answered quickly. I find the side effects difficult to deal with as I continue to work. Not sure if it is possible to work while all of this is being figured out. Do most people continue working? Richard, diagnosed in 2003 and there are still mountains? I guess I am expecting to much to soon. Beth, My hematologist specialist didn't put me on the 100mg I was on at the beginning because of the first toxicity. I have been on 20 mg which doesn't seem to be much but, I can't believe my body doesn't even like the 20 mg... I just learned today I am back into the toxicity and cytopenias. I have side effects to Diasanatib I didn't have on the Gleevec as well. I found the 100 mg gave me insomnia, medically induced depression and rash... I only have the rash at 20mg. But, seem to have a lot of bone pain lately. I am giving you all a big hug and thank you for your emails as it is nice to know there are people who understand much more than I do (being such a newbie). I look forward to hearing from all and learning from you. I hope all of you are doing well in your own journey :) Ididn't know that 1and 8 meant life.. will post this in front of me for inspiration! Cheers, Mar On Thursday, December 12, 2013 8:25:25 PM UTC-8, Richard H wrote: > > Welcome to this group. Almost every one has had problems adjusting to the > meds. Try your best to remain positive as that seems to help most of us. > We are here to listen and in return we give back what we have learned to > get over this little hill at this moment. I was diagnosed in 2003 and the > mountain I have to climb is still on the horizon. > > Richard H. > > On Thursday, December 12, 2013 8:42:51 AM UTC-6, Mar wrote: >> >> Hi, I am new to the group. I was diagnosed January 10 2013. Since then I >> have been on Gleevec, failed (due to toxicity twice) and was switched to >> Dasatinib which I have toxicity to as well and had to stop taking the >> medication. Each time I have had the toxicity my blood levels are so low >> that it takes 4-5 weeks for them (neutrophils, platelets and wbc's) to go >> back to even the lower range of normal. Thus, I have not yet had any >> cytogenic or molecular recovery.. if anything, my last result was going >> backward. I have another appointment on December 19th to see if there is >> any recovery at all... I am keeping my fingers crossed. It has been quite >> the roller coaster... I am not sure if others have had the same type of >> roller coaster in the first year. >> >> I just ran into this group tonight and I appreciated reading others >> emails about their recovery... thank- you.. Hope to be able to post one of >> my own recovery stories one of these days. >> >> Mar >> > -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out.
