Working thru our differences., Gordon, JH, Pete, IG, Chonette, everyone........

[Guest guest]

Dear All,

As a member/reader here only, I want to thank everyone involved in this latest

scenario for overlooking any and all of our combined enthusiastic

'overreactions. especially mine. I get very excited about all these various

medical situations, treatments, protocols and I have an almost immediate anger

that develops when information is withheld or doors are closed or anything is

reserved or secret or limited to only those with a title. I am constantly

asking WHY? and what does that mean? That is what I find here with all of us

and I would truly hate to see that combined energy " to know " being inhibited in

any way within our group.

The other thing I find exciting and comforting at the same time is the this

groups ability as usual to work things out among ourselves even when is

gone. We seem to be a very uninhibited and expressive group as groups go with

a need to bring our points out. Along with that type and kind of enthusiasm

comes a " highly charged emotional connection " that push's us all individually

and seems to drives our need for information and our need to communicate. I

truly appreciate that overriding theme on this forum, the main reason I get

involved here. There is a sense of honesty and truth that comes with that

emotion and I am finding that we all seem to want to be united in our common

fight " rather than waste our time getting mad at each other or fighting with

each other " .

For example how could I or you be personally mad at anyone who posts here? How

could they be mad at us personally? Not for a moment, why? " it is all about

the information and the process only! We usually don't know anyone here

personally and even if we did, I'm sure each of us is a very good person and may

have a dog or cat that loves us and our mothers would swear by us anywhere and

we all have people who not only love us but like us a lot. So, naturally we get

emotional and upset or bothered by medical differences and contrasting

information in our common fight, that always happens. But the comforting part,

is that as usual we seem to find some quick resolution between ourselves.

I agree it is important to Note what IG and Gordon said:

IG:

" ........that people not check their brains out when they read some of the

stuff posted here. It's that simple. My notes

have always been pointed in that direction. I don't impugn the motives of

anyone who wants to share stuff. But everything, and I mean everything, should

be run through an individual's critical filter,....... "

Gordon:

" .........The discussions over the past month have been very informative and

helpful. I see no reason for anyone to take offense. This is a great board for

people like me who have CLL and are looking for information. It is understood

that no one is a doctor, so the information helps me to prepare and ask

questions of my Onc. and to do more search on the web....... "

I especially want to thank Chonette for her being so open and putting her

personal information there for all to see and much of her investigation. Also,

many thanks to Pete for his kind remarks on the board this morning...... I will

list some of them here:

Chonette: - Quote from Dr. Hamblin:

" ............I have seen several patients whose lifespan was unaffected by their

CLL

who had enough chlorambucil to produce a PR on several occasions, but suffered

no inconvenience from it.Because clinical trials take so long to complete we

tend

to use surrogate end points like response rate and progression free survival. In

CLL these can be misleading. Despite having superior response rates and

progression free survival times, no single trial or combination of trials has

demonstrated that fludarabine gives a longer overall survival than

chlorambucil (Leukeran)....... "

Pete

" .........I was diagnosed in January 2002, I've tried my best to stay positive,

upbeat, and full of encouragement. But, we all know that this is hard to do all

of the time " . ........... " I will certainly stay with the group since my

knowledge of CLL/SLL has improved 110 % percent.......... "

That's the best part Pete, that your staying with the group and are learning

here. I learn every day here, as when IG pointed out the new discovery of " Cell

Proliferation " . Then I went to 's Web site and read all about it. I

can't say strongly enough how important I think it is for everyone here to read

the CLL Topics Web site information from beginning to end. It's a lot of

reading and you can start with your own special areas of need, but the

information gathered there by has led the charge and opened everyone's

eyes for well over a year now. Dr.'s information as well as Dr. Hamblin's

list of posts should be required reading for everyone who has CLL. Most of the

answers are there from both of them.

However here, thanks to , we get to talk about all our own personal

experiences and we get to share our reading and our investigations and " most

important all the new information coming out and especially with our particular

medical situations, what " might or might not be the best way to go with our

treatment. When every doctor you go to has a different protocol that they

advise and use for the same cases, that alone should show you how important your

own input is in making those treatment decisions. By talking here, we get to

help each other with information that is important to making those treatment

decisions. Chonette is a good example, she was trapped so to speak in England

where she couldn't get Rituxan, so she received information here and other

places about Chlorambucil and against all the odds, she has found a temporary

remission of sorts and has bought valuable time. She weighed the dangers of

Chlorambucil against all the other drugs being offered and she made a choice and

it worked for her. has said that is the main point of this site. To help

us all with our knowledge of CLL and therefore with making those important

decisions with our treatment protocols.

Thanks for everyone for my involvement here and I now have to go take care of

Dad, we are going down to see the doctor about his ITP. He has received his 4

Rituxan infusions and his platelets were still reading 17 yesterday. So now we

have to consider the next step. Either IgG or IVIG (if there is a difference?)

or Anti-D..? But Anti-D does usually cause loss of Hgb....so thats out as Dad

takes Aranesp every two weeks now to keep his Hgb up to par. So perhaps we have

to consider Prednisone, but I'm worried about the negative effects that

Prednisone will have on an 85 yr old mans immune system, that's about all he has

left is a good immune system, now operating on low WBC and low Neuts.....but

still acceptable. Prednisone may cause that to go too low.

I am certain that I will probably have to arrange a meeting with s Dr. the

man who had the Web interview recently, I forget his name at the moment.

Anyway, that's the way it is today Thurs Mar. 17th, 2005.

My kindest regards to all, Kurt

Re: IG - Chlorambucil/Lukeran

You misunderstand the intention of my remarks.