newly diagnosed - learning about CLL - Jean

April 28, 2010

It’s

impossible for anyone to explain anything without knowing your numbers. Do

ask the doctor to explain the results to you and where the % is shown, etc. Ask

him, too, what he thinks the urgency is. The standard used for

determining need for treatment is called staging, which you can find explained

on the web in various places, including Chris’s website: http://cllcanada.ca. There are

explanations for the various treatments such as Rituxan there, too. You

may want to look at such explanations before you see him tomorrow. Are

you experiencing uncomfortable symptoms? Is your absolute lymphocyte count

climbing so fast that it’s doubling in less than 6 months?

The

doctor should be able to tell you why he thinks you need treatment now. From

what some patients report, some doctors tend to advise treatment before others

do. If you tell this list what your situation is (numbers, symptoms,

etc.), you should hear from some other people who may have been in a similar

situation as to what their experiences were. Yours will probably never be

exactly the same – we’re all different – but it’ll help

give you an idea of what the range of experiences can be.

When

we’re first diagnosed, it’s easy to feel overwhelmed. There’s

a lot to learn, and when a doctor advises treatment right away, it can feel

even more pressured. Just remember that you don’t have to grasp

everything at the beginning. There’ll be time in the weeks and

months (and years) to come to acquire a better understanding and knowledge.

Take a deep breath; read up a little before you go, if you can; write your questions

down so you can take them with you; and take someone with you to the appointment,

if possible. Here are some other sites you might like to take a look at:

(This site is based in Great Britain, and FBC = CBC, I believe.)

Best

wishes,

Karni

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