On or off topic

[Guest guest]

Folks - coming back and browsing through the postings I find that we seem

frequently to have abandoned our original purpose, as listed below:

" This is a group soliciting postings of general and serious medical interest to

patients with CLL or SLL. We look for and discuss information of an educational

and medically informative nature, and encourage postings from individuals with

medical issues and problems relating to CLL or SLL. "

I believe that, with the help of the doctors on our group and with a well

informed patient body, we have become a leading group in the dissemination of

CLL medical information.

We should try to stay on-topic and stay away from politics, alternate medicine,

being a " support group " .....There are groups that deal with many various aspects

and do a great job of it (CLL Forum is an example). Our scope is intended to be

more focused.

We will be looking a little harder at postings, discouraging the " off-topic "

stuff, and returning the group to the high level of medical excellence that it

was intended to be and that it became.

Thank you,

[Guest guest]

Thank, much appreciated.

From: <jb50192@...>

Subject: On or off topic

Date: Sunday, March 20, 2011, 1:49 PM

 

Folks - coming back and browsing through the postings I find that we seem

frequently to have abandoned our original purpose, as listed below:

" This is a group soliciting postings of general and serious medical interest to

patients with CLL or SLL. We look for and discuss information of an educational

and medically informative nature, and encourage postings from individuals with

medical issues and problems relating to CLL or SLL. "

I believe that, with the help of the doctors on our group and with a well

informed patient body, we have become a leading group in the dissemination of

CLL medical information.

We should try to stay on-topic and stay away from politics, alternate medicine,

being a " support group " .....There are groups that deal with many various aspects

and do a great job of it (CLL Forum is an example). Our scope is intended to be

more focused.

We will be looking a little harder at postings, discouraging the " off-topic "

stuff, and returning the group to the high level of medical excellence that it

was intended to be and that it became.

Thank you,

[Guest guest]

As a CLL patient who will be undergoing first treatment this

summer, I've been learning SO MUCH from this group --

especially about clinical trials, new drugs and

combinations, and treatment side effects like shingles. If

some of this information must now be limited to " support

groups " (CLL Forum was mentioned), could someone please give

me a URL for any groups of this type. I want to read any

and all discussions that pertain to my illness and its

management, including alternate medicine.

Thanks in advance.

[Guest guest]

The URL is:

http://cllforum.com/

Also, the Christian Friends of CLL is a good place to go:

http://www.cllcfriends.com/index.php

[Guest guest]

I don't think you will find the information you are looking for

missing because of 's note. Posts were getting into politics,

especially about the FDA, rather than addressing the kinds of things

you mentioned. Obviously everyone is concerned about getting new and

better treatments through the FDA process, as it affects all of us,

but is asking that that type of discussion take place elsewhere -

perhaps the ACOR group designed to deal with politics.

Alan got two groups that I like very much. Both of them have serious

medical information shared by fellow patients (Dr. Hamblin answers

questions on CLL Christian Friends) as well as more social aspects -

game sections, shared " bragging rights " and photos of babies growing

up, vacation pictures, spiritual sections, areas for just venting,

etc.

Another two are

the ACOR group - CLL@... - also more medically oriented,

but with a bit more back patting which isn't against. He just

asks that we do that off list.

CLL Canada - CLLcanada.ca. Lots of good information here, also. I'm

not as familiar with the group, but believe it is also primarily

medically based. Dwyer, who started the group is an amazing

researcher, so you will find information on the latest research here.

also posts important research to the and ACOR groups.

I believe that the ACOR group also has a site for discussing politics

specifically. Can someone add the information about that site? I'm not

familiar with it.

CLL Topics has a wealth of information. Just don't let yourself become

overwhelmed. Read the things that pertain to where you are now dealing

with CLL. I tried reading and understanding everything there when I

was first diagnosed and quickly realized I was way over my head with a

lot of the information, even though does an amazing job of

explaining things in understandable terms. The site also has a

downloadable form for charting your labs. I believe has also

started a discussion group. Again, is there someone involved with that

group who can fill in the blanks?

A great resource in print is the Lymphoma Research Foundation's new

booklet on CLL

(lymphoma.org/booklets). You can order copies - more than one if you

want to give them to family, other doctors, whatever - or read the

booklet on line. Again, don't get bogged down in the more advanced

information that doesn't apply to your particular CLL. A lot of the

information about treatments is changing daily, with some exciting new

things coming along.

That makes a pretty good list of groups I would trust. Just searching

the internet can lead you to a lot of old and/or incorrect

information. According to what I first read I should have been dead

three or more years ago. I'm healthier now than I have been in

probably 20 years. Happy reading!

Pat

[Guest guest]

Another good resource is the Leukemia and Lymphoma Society (LLS).

They also have a nice informational booklet and have online support

groups. Check out lls.org.