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inremission (11/06/09)
P.S. I am just now going back to work as a family and marriage therapist. I also have a background in accounting and thought I might go back to that field because I like it, but things just started to fall into place for the other. I hope you have found a job and know that everything will work out. There are people on the other site I mentioned who are 14 to 30 years out with CML. Take care!
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inremission (11/06/09)
Thanks for your kind message. My husband is a jewel. And what a !!!!!!!!!!!!!! your former husband is. I am so sorry, yes what a blow! I hope something good has come out of that for you. Wow - really hard to believe! I'll keep you in my prayers! There's a really good CML site - you can scroll down on this one to a previous conversation called "Sprycel" and get the link to Jerry's site. If you don't find it let me know and I will look it up. I hope you are well. Warmly, Kim
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PerryI (11/05/09)
That's a good result--it's about a one log reduction! Actually, I don't get BMBs anymore at this point because I've got a complete cytogenic response; all they do for me too is the PCR with peripheral blood.
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inremission (08/28/09)
Hi-
Sorry to hear of your diagnosis. It is scary and I've also discovered that CML is a manageable condition. I was diagnosed exactly 1 year ago. You'll learn as you go along --- there's a lot of information out there. You will probably get some very specific answers from some of the group members. I'm going to try to give you the basics in a nutshell.
The tests that I know of are: WBC, FISH, PCR, and Bone marrow test and aspiriation. They had to have done a bone marrow test in the beginning to make the diagnosis. I've heard that it can be common for people to go on and off Gleevec in the beginning while the bone marrow is healing and healthy cells are given the chance to mature again. My onc is a CML specialist and he does a bone marrow test every 6 months for the first two years. I had a PCR test at the 6 month mark and the 1 year mark. I also had a FISH test and bone marrow test at the 1 year mark. (my previous onc didn't do a 6 month bone marrow test). It has taken me time to understand the various tests. The levels of remission are hemotologic, cytogenic and molecular, in that order. You want to reach a cytogenic remission within the first year. That is why the 6 month bone marrow test is important because it's the only way to really tell what's going on with your numbers. My doc told me that had he done a 6 month test, and my numbers weren't lining up with the statistics that indicate low relapse percentage, he would have increased my Gleevec or changed my medication. So be sure to have an oncologist who understands this. It is my understanding that only a few reach a complete molecular remission, but cytogenic is good too, and people who reach that within the first 2 years have a normal life expectancy. 30+ years. Look it up online: CML cytogenic remission vs. molecular remission. Take really good care of yourself. I rested a lot and didn't push myself to do anything for several months. I had lots of side efffects from the Gleevec. Most of them are gone now and I have learned to accept Gleevec. My life has pretty much gotten back to normal except that I have to be more careful because I tend to get sick more easily. In many ways, my life is better since CML because I'm grateful for every day. Check out the leukemia and lymphoma society website -- there's lots of info. I wish you well -- you will be ok. One day at a time. My prayers are with you.
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