Ellen

[Guest guest]

Hi Ellen, I'm glad I could help in some small way. I wish I could do more.

I sometimes have lower right abdominal pain and wonder if it is associated with my back problems. There isn't much else it could be since I had a complete hysterectory.

I am so glad that you are doing so well. Joan

Hey Joan,Thanks for posting the information about the procedure. I didn't knowwhat it is either. I am doing well, almost five months post op from my surgery. I had adisk taken out, fused from L4 to S1 with cages, rods, and screws.Also, had bone taken off of the right ileac crest. The worst problem Ihave now is the muscles in the area where they had to separate them todo the surgery are very irritated from the physical activity I can donow. Also, the muscles in my legs, have tightened up. I do have sometight muscles in my back as well. We are working on it all in PT whichI get to do in the swimming pool there. They told me that the rightside of my pelvis likes to tilt forward and we are working onstrengthening the muscles so that it stays in place.I know that surgery is not for everyone, but am very glad with theresults that I have gotten. Even if the muscle pain doesn't go away,I'm still happy that I had it done. I found a great practice thatspinal surgery is all they do.Anyway, I hope you all have a great weekend. Time to go process peaches. Ellen

[Guest guest]

I have posted directly to folks. I do post important info re conventional

tx.. Plus I shared info about 11q. I have seen many irrelevant

posts not attributable to me (example: "hi everyone. Hope you

have a good day"). I'm sorry that some folks don't like my posts,

but I'm comfortable with the group as I'm learning more about cll.

Perhaps I'll make all my posts to individuals.

Ellen

jb50192@... wrote:

Ellen

- let me be blunt - I have received dozens of complaints about you: You

post to the group when you should be posting to individuals, you post unimportant

information and ask unanswerable questions, you insist on posting about

alternative medicine, and counter our simple rules in any number of ways. Numerous

people have left the group specifically because of you, and the tenor of

the group has changed because of you. You

add very little, you create meaningless controversy, and annoy many. I'm

sorry to be posting this publicly, but I want the group to know that I

am taking my last message (see below, if you missed it) seriously. Please

consider this a warning. You might find another group where you would be

more comfortable. 8/29

- Dear Friends - first a bit of history. This group was created about

6-7 years ago when Venkat chose to close her discussion group, CLL

Topics, probably because she was as frustrated as I am now, and just focus

on her research and web site. There was and still is ACOR, a fine group,

but I wanted there to be our medically very serious group, and tried to

follow through with CLL/SLL. The group grew to a membership of over 600,

Dr. Furman joined us as medical advisor, and we now also enjoy the presence

of Dr. Hamblin. But

you know what? We are losing more people than we are gaining. The reason

is a total loss of discipline and great misuse of the group. I have worked

hard at this for years, and sincerely hope that this is my last e-mail

on the issue. 1.

If you have something not terribly important medically to say to one person,

please send the e-mail to them directly. 2.

Please erase all but the last, or most significant, e-mail from

your replies and comments, so that we do not have a train of many e-mails

on each response. 3.

Do not post useless references to articles that you may have read.

Make sure they are pertinent, and explain so in your e-mail. 4.

Have the good sense to know when to stop beating a dead horse. For

example, no one at this time is in a position to determine whether or not

Fludarabine is good or not for every patient. 5.

Stop looking for meaningless and not available statistics. 6.

Do post significant experiences that you have had with a particular

treatment. 7.

Do, by all means, post medical questions that trouble you. 8.

For very frequent posters, you know who you are, do practice restraint. 9.

There is a site for alternative medicine. Please go there to discuss

it. 10.

All the other things we have been asking for all along. Another

problem has been the varying level of discussion of the group. We have

old timers who know everything and can discuss science as well as a hematologist.

And we have folks who just got diagnosed, and do not even know the acronyms

we use. They're scared and unsubscribe. We're going to try something new.

We're going to start a second group, CLL/SLL/LIGHT. The purpose will be

to welcome folks who are relative newbies, and wish to understand the fundamentals.

(Those folks should also look at our associated web site, www.cllinfogroup.org).

I will let you know when CLL/SLL/LIGHT is available. You can join either

or both. Folks,

I ask for your collaboration. I cannot do this without your help. If the

group continues to be swamped with unimportant e-mails, we'll die. After

many years of trying to put together something meaningful for people suffering

with CLL, I do not want to see that happen. If folks want to go "in your

face" on this, I shall be obliged to cut them off for the good and medical

benefit of the group. Thank

you so much for listening,