Re: Hi my new group

[Guest guest]

Hi Bette,

I am relatively new too. Joined the group in June when I was

first diagnosed. This is a great board with so many

knowledgeable people who will guide you as you navigate this

complicated blood cancer.

Being a newbie I can suggest the following web sites that

helped me considerably in addition to this one:

cllforum.com This is another message board.

clltopics.com This is an informational source with a first

rate moderator/director who will answer your questions

directly as well as posting valuable information.

You are already a " survivor " so we can also learn a lot from

you.

Best wishes,

Q

[Guest guest]

Hi Betty - this group you're on is excellent. The

primary focus is frequent and interesting dialogue on

medical/scientific info relating to CLL. Here are some

additional suggestions.

1) study & learn some of the basics about CLL -

http://www.clltopics.org and

http://cllcanada.ca/2010/index.htm

are excellent sources for CLL information

2) find a CLL expert doc that will work with you, your local

PCP & your local hematologist/oncologist. See the following

online resources to help find a CLL expert doctor close to

where you live

http://cll.acor.org/DRdoctors.html

http://www.cllfoundation.org/drdirectory.aspx

3) find a local hematologist/oncologist willing to work with

your CLL expert doc - your primary care physician (PCP) can

probably help with this

4) have you had the following blood tests - FISH

analysis, Flow Cytometry, IvGH analysis, ZAP-70. If yes, get

copies and go to

http://www.clltopics.org/PI/PrognosisatDiagnosis.htm to

learn what these tests mean.

5) organize your team with 1, 2, 3 above - then be

pro-active and take good care of yourself

Here are some additional resources-

lymphoma.org/booklets http://tinyurl.com/3hxg3rf - They have

a booklet that is very good - " The Red Book " . You can order

free copies or read it online http://tinyurl.com/42x78za

An excellent resource - CLL Topics is at

http://www.clltopics.org/PI/PrognosisatDiagnosis.htm and the

article updates are at http://updates.clltopics.org/

Note: if you register for the updates@ clltopics.org you can

then read and post to the comments section that's after each

new article. Again, it's a lot of interesting information.

Some of the notable posters here are Dr. Hamblin, from

CLL Canada, and a few doctors (general practice) who

themselves have CLL.

ACOR has a discussion group that is also more medically

oriented. http://cll.acor.org/help.htm

http://www.cllforum.com is a discussion forum devoted to CLL

(more general in nature – and has list of resources and

links for CLL info)

An outstanding resource - Dwyer started the

invaluable http://cllcanada.ca/2010/index.htm - again more

scientifically/medically oriented. is one of the best

researchers and nicest people I have encountered on the

lists. This is not a discussion group - it's a source of up

to date information about all things related to CLL. Chris

is also active on this discussion group.

For me being pro-active and learning all I could about CLL

helped me to accept and deal with my situation. Knowing what

to watch out for and how to take care of my CLL put my CLL

in perspective. I'm in watch & wait (w/w) mode but with CLL

one needs to be diligent, have frequent blood testing and

monitoring by your hematologist/oncologist to monitor the

disease.

I find it really helps me to make every possible effort to

stay mentally, emotionally & spiritually fit. Enjoy life,

spend time with family and loved ones. And good friends are

priceless.

Good luck - Patti