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:
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
> >
> >
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