New to CLL

[Guest guest]

Hi everyone. I am new to the group, and new to CLL. I was

diagnosed about a month ago. I have been reading the threads

and I have to admit, most are way over my head. I have

gotten some good ideas from your conversations, though.

I met my oncologist and had tons of test done. I am stage 0

and all my tests are coming back perfect. I meet with her

again next month. I asked her for a copy of all my results

so when I am reading something, I can look and see where I

fall. She said she will have that for me on my next visit.

As a newbie, what types of things should I be asking her? Is

there anything that you are glad you did when you were first

diagnosed? Or anything that you wished you had done?

Mod's note from - Here's a helpful, recent response

to a similar question:

/message/16184

[Guest guest]

Crystal,

I would tell your doctor you would like the test results NOW

so you can do some research and have questions for her on

your next visit. These are YOUR results and under HIPAA

law, you are entitled to them. I would ask her when you can

come by to pick up copies. Or better yet, tell her you will

be by next Monday for your copies. With CLL you will want

to become " the boss " , albeit as gracefully as you can.

You will get many posts and suggestions, I'm sure. For

starters, I would recommend two sites managed by

Venkat. That is where I started my CLL journey. One is

" view only " with no log in or viewer discussion .. that is

http://www.CLLTOPICS.org/ At her second site, current

medical articles are presented by her and viewers can log in

to ask questions and view the questions of others. This is

http://updates.clltopics.org/

Again, others will give you a huge list of resources. I'm

only sharing where I initially went to get my " CLL 101 " .

After some years, many of us earn our advanced degree in

CLL, while for some that is not necessary as they have an

indolent path that never needs treatment.

Hoping you are the latter. But it's good to educate

yourself (and perhaps your doctor), just in case you are

like me. And, we ARE all incredibly different with this

disease. But that said, there can be similar experiences

and that is why this group is so valuable.

All the best

Lynn