Wbc 231

[Guest guest]

Dear Eva,

I'm not sure I get your letter right, as it was connected to another

message. Did you say your WBC is 231 and can't get meds for 3 weeks. My dear

Eva, you should be on Hydrea until you can see a specialist and get your new

meds, whatever that will be. Can't you call the doctor and ask him to give you a

prescription. Being without any meds for 3 weeks after diagnosis would be very

scary for me. Please do inquire about it for your own satisfaction. Where do

you live that you have to wait that long to see a specialist. It would seem to

me they would get you in ASAP. You have to be your own advocate, if you are

alone most of the time. Sometimes you have to make a little noise to get

attention. I'm glad you found us so soon, Eva, and I hope you will stay in

touch. I'm very sorry you got the diagnosis, but it is not the end of the

world. I think we could have worse things than CML, because it is so treatable

today. So what if we have to take medicine the rest of our lives, don't other

people who have chronic disease? Keep track of your reports, ask for copies and

store them in a notebook. Write down the questions you need to ask.

Read about Andres Schorr and his survival with CML. http://tinyurl.com/36bbrt

Here are questions you can ask your doctor:

a.. What treatment choices do I have?

b.. Which treatment do you recommend, and why?

c.. What side effects are there to the treatments that you recommend?

d.. What can I do to help reduce the side effects I may have from treatment?

e.. What are the chances that my leukemia will come back once I am in

remission?

Here is the entire website if you want to learn the basics about CML. It is

very informative for the newly diagnosed patient.

http://www.antigenics.com/diseases/cml.html

If you live in the US, here is a good site to learn about clinical trials.

http://www.clinicaltrials.gov/ct2/results?term=CML+clinical+trials

Let us know if you have needs, Eva,

Lottie