Livia, It sounds to me like you have things under control. It's good that you have access to a CML specialist at Johns Hopkins! He will be able to look at your records and give you a much better understanding of your disease. Be sure to ask questions!
When you get your test records you can look in the "Database" section of this groups web site at the "Blood counts" data to compare your results with the results of others in this group. Let us know what you find out, we will keep you in our thoughts and prayers! Richard Troxel --- In [email protected], livia klescova <[EMAIL PROTECTED]> wrote: > Finally I went to the medical records and asked them to send me all of my test results I have in my file. So I will know more about my WBC, RBC, platelets etc. I will make some chart, because if I would like to have a consultation with some doctor or maybe in my native coutnry I need to know it:) Not that I do not care, but I was just trying to forget I have CML and I did not want to see my results. I have my blood work done every 10 days. I see my oncologist (not a specialist) once in a three months. Also there is one doctor in Johns Hopkins who is always willing to answer my questions and see me, so I am going to meet him for the third time in September. He is a cml specialist, he is the one who can answer all my questions and has a lot of knowledge abt research and what is new. > I am thinking about changing my insurance. The other one will be more expensive but will provide me with a cml specialist. I will pay more for Gleevec and insurance, but this insurance doesn't pay for the transplant with my own cells. I am not sure if my present insurance pays for the both types of transplant, I need to find out. > My oncologist doesn't phone me and explain me my test results. There are many things I do not understand, but there is a CML yahoo group, and I found out three other support groups where I can always ask, so it is good. > Love, > Livia > > Richard <[EMAIL PROTECTED]> wrote: > Liv, > > I assume that you have regular blood testing done. If everything is > OK your white blood cell counts should remain in the low to normal > range. Many people on Gleevec maintain counts that are below normal. > If your counts go above normal significantly I'm sure your doctor > will talk to you about what to do. > > You should be seeing a CML specialist or a doctor who will take the > time to keep up with the latest news about CML. I see my CML > specialist every four to six weeks. She reviews my blood tests every > two weeks and phones me with the results each time. > > Richard Troxel > > --- In [email protected], livia klescova <[EMAIL PROTECTED]> wrote: > > > > thanks Richard, > > i found the yahoo group very important for my life over here. i'm > glad to hear that my english is good, at least getting better. this > is also a way how to improve it. my primary oncologist is not a cml > specialist, but somehow God sent me one doctor who is a cml > specialist and he wants to see me once in a while : ) his wife's > family is from slovakia. i was asking him to give me som > consultations if he can. he is so busy, but he never said no and so > far it works with my insurance company. > > back to my relapse question, there is no way i can check on myself > that there is something wrong with me, so maybe i am getting > resistatnt? it seems very pesimistic, but i am just trying to be > careful and find out if there is some warning signal telling me to > be "careful". > > have a good day. > > liv > > > > Richard <[EMAIL PROTECTED]> wrote: > > Hi, > > > > The chances of a relapse are not big, but it is possible. Blood > > testing on a regular basis is important as well as having a bone > > marrow biopsy every six months or so. This is really the only way > to > > tell how you are progressing. I hope that your doctor is following > > you closely! If you do show signs of relapse there are things that > > the doctors can try and there are some clinical trials for people > who > > do not respond to IM (Imatinib Mesylate). > > > > Your English is much better than any of my non-English languages. I > > read and speak some German and some French, but not very well. Have > > you tried Google.com? They offer translation services for most web > > pages and email (I think). There is also babelfish.com to help you > > with any troublesome words or phrases! > > > > You are in a good group, these people care, I am glad to see you > > speaking up and asking questions. > > > > Richard Troxel > > California, USA Male Age 61 dx 2/2003 PCRU 9/2004 > > > > > > > > --- In [email protected], livia klescova <[EMAIL PROTECTED]> wrote: > > > Most of the time I am reading all the posts, since it is very > > difficult for me to express in English what I feel, what I found > out. > > Many times I have a problem to understand whole context and most of > > the time I am lazy to use a dictionary : ) > > > I am wondering, how can I find out that I am getting resistant to > > Gleevec? Is it something what only blood test can show? Also I read > > that some people relapsed to the blast stage. So is it possible > that > > if I was dx in a chronic stage that I can relapse to a blast stage? > > Will I know about it? If yes, how? > > > Thank you, Livia > > > > > > > > > __________________________________________________ > > > Do You Yahoo!? > > > Tired of spam? Yahoo! Mail has the best spam protection around > > > http://mail.yahoo.com > > > > > > > > > > New! Sign up for local CML support group meetings in your local > community at http://cml.meetup.com > > > > Apply for Commercial Real Estate loans online and submit your deal > to dozens of hungry lenders in just minutes. Loan programs for all > types of business and commercial real estate. 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