Re: New on here---

[Guest guest]

Hello - welcome to the group, a bunch of well informed optimists......

Let us have your name, city and ZIP so that we can enroll you in CIG (CLL

Information Group)

First of all, do not worry. Many people with CLL or SLL (it is basically the

same disease, one shows up more in the blood, the other a bit more in lymph

and lymph nodes) can live forever and die of natural causes.

A few comments: Up till a few years ago " watch and wait " was all the rage.

Nowadays, some doctors like to do some prognostic testing, to try to determine

genetically what your chances are. Then they may decide to continue with

W & W, or do some treating. Much of this depends on which cancer center you

associate yourself with. Don't know where you live, but, for example, MD

in Houston tend to be a bit more aggressive.....

Combinations of Fludarabine, Cytoxan, and Rituxan have been used in all

different ways. Others on this group swear by Chlorambucil and (or not) Rituxan.

And others think other things. You should get yourself into competent hands,

first of all.......

Genreally speaking, the later you start mucking up your system, the better.

Let us know what you found out in your tests, there is a lot of experience

on this page.

[Guest guest]

Hello everyone,

I feel so fortunate to have found you all. There is so much I want to say but

it has been a long day and I need to settle down. I tend to get very excited

when I have good news and today--it was good.

My bloodwork continues to be normal with some things going up which I want to

go up!! The only " abnomal " reading(and it has been there most of the time) is

the % imbalance between the lymphocytes and the granules. That is the

indication of the lymphoma in the bone marrow. I still have no swollen lymph

nodes and am feeling wonderful. Do not see him again for 6 months, Will not

have catscans this year and from a long conversation with him mentioning several

doctors(the one in Jerusalem, Betty) and Dr. Byrd at Cancer Center in

Columbus, Oh(he just talked to him on Friday), I am reassurred about being with

a doctor who is on the cutting edge and deals with and knows doctors on the

cutting edge. Learned more about the difference(there is alittle)with sll/cll.

There is one treatment he did mention which they do for cll but is not helpful

for sll. Can't remember it and isn't important right now. Have read alot of

info on both but there is so much more on cll. He did

encourage me to study all of that and most of it is applicable to my situation.

Just alittle more info tonight so you can know me better.

Swollen lymph node found in a mammiogram in summer 2002 right after we moved

from Dayton to Cincinnati. Biopsy under general anesthesia on Aug.16 of that

year---with dx done right then. Following week with my new friend--the

oncologist--had bone marrow biopsy---small involvement on both sides---thus

stage IV..

Byrd at OSU is doing aggressive clinical trials---one of those hoping to find

a cure, but, as you said , I am not messing with this body right now but

hoping and praying for a cure--for everyone someday and living my life with more

embracing of the moment that pre-diagnosis. Have had no treatment so far and

hope it stays that way for years.

Anyone using Green Barley? I do not eat red meat----except when I can't

resist a taste of pot roast and the prime rib we had at Christmas. Yes--I

normally stay away from sugar but in celebration today--I had a bar of dark

chocolate!! :-) I am very much into studying alternative/complementary methods

and can supply a website for anyone who is interested that has been set-up by a

dear man in his 80's who was supposed to die in his 70's because of lymphoma.

He is a former engineer(so he is no dummy out there on the fringes)who has

compiled much info on what is out there in alternative land. Self-medicated

with green barley and is cancer free. He is the father of a friend of mine so

this is legit. That being said we are each unique beings and our bodies respond

differently to everything.

Getting off now and praying for those who especially seem to need it today.

, my address etc.

Baker

2506 Moundview Dr.

Cincinnati, OH 45212.

jb50192@... wrote:

Hello - welcome to the group, a bunch of well informed optimists......

Let us have your name, city and ZIP so that we can enroll you in CIG (CLL

Information Group)

First of all, do not worry. Many people with CLL or SLL (it is basically the

same disease, one shows up more in the blood, the other a bit more in lymph

and lymph nodes) can live forever and die of natural causes.

A few comments: Up till a few years ago " watch and wait " was all the rage.

Nowadays, some doctors like to do some prognostic testing, to try to determine

genetically what your chances are. Then they may decide to continue with

W & W, or do some treating. Much of this depends on which cancer center you

associate yourself with. Don't know where you live, but, for example, MD

in Houston tend to be a bit more aggressive.....

Combinations of Fludarabine, Cytoxan, and Rituxan have been used in all

different ways. Others on this group swear by Chlorambucil and (or not) Rituxan.

And others think other things. You should get yourself into competent hands,

first of all.......

Genreally speaking, the later you start mucking up your system, the better.

Let us know what you found out in your tests, there is a lot of experience

on this page.

[Guest guest]

oh i remembered his chemo... fludarabine and cytoxan, gets a follow up shot

of neulasta

[Guest guest]

Excellent news, . Glad you are with that doctor - he sounds great. I,

personally, would be interested in the alternative approach. I am eating flax

oil and low-fat cottage cheese on oatmeal most mornings (Mrs. Budwig's

approach), and I do have green tea lozenges that I use most days. I figure

anything that can't hurt and might help is worth a try! Glad to hear your new

as I get ready for my checkup in Houston tomorrow. Blessings.

Re: New on here---

Hello everyone,

I feel so fortunate to have found you all. There is so much I want to say but

it has been a long day and I need to settle down. I tend to get very excited

when I have good news and today--it was good.

My bloodwork continues to be normal with some things going up which I want to

go up!! The only " abnomal " reading(and it has been there most of the time) is

the % imbalance between the lymphocytes and the granules. That is the

indication of the lymphoma in the bone marrow. I still have no swollen lymph

nodes and am feeling wonderful. Do not see him again for 6 months, Will not

have catscans this year and from a long conversation with him mentioning several

doctors(the one in Jerusalem, Betty) and Dr Byrd at Cancer Center in

Columbus, Oh(he just talked to him on Friday), I am reassurred about being with

a doctor who is on the cutting edge and deals with and knows doctors on the

cutting edge. Learned more about the difference(there is alittle)with sll/cll.

There is one treatment he did mention which they do for cll but is not helpful

for sll. Can't remember it and isn't important right now. Have read alot of

info on both but there is so much more on cll. He did

encourage me to study all of that and most of it is applicable to my situation.

Just alittle more info tonight so you can know me better.

Swollen lymph node found in a mammiogram in summer 2002 right after we moved

from Dayton to Cincinnati. Biopsy under general anesthesia on Aug.16 of that

year---with dx done right then. Following week with my new friend--the

oncologist--had bone marrow biopsy---small involvement on both sides---thus

stage IV..

Byrd at OSU is doing aggressive clinical trials---one of those hoping to find

a cure, but, as you said , I am not messing with this body right now but

hoping and praying for a cure--for everyone someday and living my life with more

embracing of the moment that pre-diagnosis. Have had no treatment so far and

hope it stays that way for years.

Anyone using Green Barley? I do not eat red meat----except when I can't

resist a taste of pot roast and the prime rib we had at Christmas. Yes--I

normally stay away from sugar but in celebration today--I had a bar of dark

chocolate!! :-) I am very much into studying alternative/complementary methods

and can supply a website for anyone who is interested that has been set-up by a

dear man in his 80's who was supposed to die in his 70's because of lymphoma.

He is a former engineer(so he is no dummy out there on the fringes)who has

compiled much info on what is out there in alternative land. Self-medicated

with green barley and is cancer free. He is the father of a friend of mine so

this is legit. That being said we are each unique beings and our bodies respond

differently to everything

Getting off now and praying for those who especially seem to need it today.

, my address etc.

Baker

2506 Moundview Dr.

Cincinnati, OH 45212.

jb50192@... wrote:

Hello - welcome to the group, a bunch of well informed optimists.....

Let us have your name, city and ZIP so that we can enroll you in CIG (CLL

Information Group)

First of all, do not worry. Many people with CLL or SLL (it is basically the

same disease, one shows up more in the blood, the other a bit more in lymph

and lymph nodes) can live forever and die of natural causes.

A few comments: Up till a few years ago " watch and wait " was all the rage

Nowadays, some doctors like to do some prognostic testing, to try to determine

genetically what your chances are. Then they may decide to continue with

W & W, or do some treating. Much of this depends on which cancer center you

associate yourself with. Don't know where you live, but, for example, MD

in Houston tend to be a bit more aggressive.....

Combinations of Fludarabine, Cytoxan, and Rituxan have been used in all

different ways. Others on this group swear by Chlorambucil and (or not) Rituxan.

And others think other things. You should get yourself into competent hands,

first of all.......

Genreally speaking, the later you start mucking up your system, the better.

Let us know what you found out in your tests, there is a lot of experience

on this page.

[Guest guest]

Thanks for the info, . If you're with Byrd, you can't do much better.

Must not get too crazy about nodes. There is a fellow I meet every year at

the Lymphoma Research Found. educational seminar (you should go this fall), who

has a huge one under his chin, looks a bit like a goiter. Hasn't changed in

years, just a cosmetic issue. Node size by itself does not make you a candidate

for aggressive TX.

You seem to be leaning toward SLL. The ratio of lymphocyte % to granulocyte

is important. Ideally, you want the gran % to be about twice as high as the

lymph %, rule of thumb. But again, what counts there is the rate of change. If

it

has not changed in a long time, no need to get crazy. How is your white count

doing? Doubling time on that is also a good indicator....

[Guest guest]

, Thanks for the info. The pronostic testing is something I have not heard

about and will talk to him about it in July at next appointment. If I were in

Texas area, I would certainly go to MD but---I'm not.

Any furthur info will be appreciated. I will keep reading the mails in this

group.

Blessings,

Baker <lbakerishere@...> wrote:

Hello everyone,

I feel so fortunate to have found you all. There is so much I want to say but

it has been a long day and I need to settle down. I tend to get very excited

when I have good news and today--it was good.

My bloodwork continues to be normal with some things going up which I want to

go up!! The only " abnomal " reading(and it has been there most of the time) is

the % imbalance between the lymphocytes and the granules. That is the

indication of the lymphoma in the bone marrow. I still have no swollen lymph

nodes and am feeling wonderful. Do not see him again for 6 months, Will not

have catscans this year and from a long conversation with him mentioning several

doctors(the one in Jerusalem, Betty) and Dr. Byrd at Cancer Center in

Columbus, Oh(he just talked to him on Friday), I am reassurred about being with

a doctor who is on the cutting edge and deals with and knows doctors on the

cutting edge. Learned more about the difference(there is alittle)with sll/cll.

There is one treatment he did mention which they do for cll but is not helpful

for sll. Can't remember it and isn't important right now. Have read alot of

info on both but there is so much more on cll. He did

encourage me to study all of that and most of it is applicable to my situation.

Just alittle more info tonight so you can know me better.

Swollen lymph node found in a mammiogram in summer 2002 right after we moved

from Dayton to Cincinnati. Biopsy under general anesthesia on Aug.16 of that

year---with dx done right then. Following week with my new friend--the

oncologist--had bone marrow biopsy---small involvement on both sides---thus

stage IV..

Byrd at OSU is doing aggressive clinical trials---one of those hoping to find

a cure, but, as you said , I am not messing with this body right now but

hoping and praying for a cure--for everyone someday and living my life with more

embracing of the moment that pre-diagnosis. Have had no treatment so far and

hope it stays that way for years.

Anyone using Green Barley? I do not eat red meat----except when I can't

resist a taste of pot roast and the prime rib we had at Christmas. Yes--I

normally stay away from sugar but in celebration today--I had a bar of dark

chocolate!! :-) I am very much into studying alternative/complementary methods

and can supply a website for anyone who is interested that has been set-up by a

dear man in his 80's who was supposed to die in his 70's because of lymphoma.

He is a former engineer(so he is no dummy out there on the fringes)who has

compiled much info on what is out there in alternative land. Self-medicated

with green barley and is cancer free. He is the father of a friend of mine so

this is legit. That being said we are each unique beings and our bodies respond

differently to everything.

Getting off now and praying for those who especially seem to need it today.

, my address etc.

Baker

2506 Moundview Dr.

Cincinnati, OH 45212.

jb50192@... wrote:

Hello - welcome to the group, a bunch of well informed optimists......

Let us have your name, city and ZIP so that we can enroll you in CIG (CLL

Information Group)

First of all, do not worry. Many people with CLL or SLL (it is basically the

same disease, one shows up more in the blood, the other a bit more in lymph

and lymph nodes) can live forever and die of natural causes.

A few comments: Up till a few years ago " watch and wait " was all the rage.

Nowadays, some doctors like to do some prognostic testing, to try to determine

genetically what your chances are. Then they may decide to continue with

W & W, or do some treating. Much of this depends on which cancer center you

associate yourself with. Don't know where you live, but, for example, MD

in Houston tend to be a bit more aggressive.....

Combinations of Fludarabine, Cytoxan, and Rituxan have been used in all

different ways. Others on this group swear by Chlorambucil and (or not) Rituxan.

And others think other things. You should get yourself into competent hands,

first of all.......

Genreally speaking, the later you start mucking up your system, the better.

Let us know what you found out in your tests, there is a lot of experience

on this page.

[Guest guest]

Hi ,

Didn't make myself clear. I am not with Byrd but my doctor just talked to him

on Friday. I have not had any treatment so I am not eligible for Byrd's trials

even if I wanted to be. All of my blood stats are within normal range. My

doctor explained the % imbalance of granules and lymphocytes yesterday because I

wanted to know why the lymph % was flagged even though the amounts were normal.

Thanks for explaining what the ratio should be. My lym. 52.9%. Gran.-41.7%.

It has been that way ---within 5-6 points--all the time so I am holding steady.

WBC 6.7 K/ul. It stays steady.

Yes-I am doing very well and am just going to " stay healthy " in the other

areas of my health as my doctor encouraged me too.. There are no swollen nodes

anywhere. The only one ever found swollen was removed from armpit for biopsy

8/02. Then the bone marrow biospy which showed sll in the marrow. Just trying

to gather information for future reference.

My doctor, Essell, said that Byrd is intent on finding a cure and so his

trials are aggressive. They have hope for the future.

Where is that seminar you mentioned?

Really appeciate all the help you give to so many on this site--as well as

myself. Hope you are feeling well tonight.

jb50192@... wrote:

Thanks for the info, . If you're with Byrd, you can't do much better.

Must not get too crazy about nodes. There is a fellow I meet every year at

the Lymphoma Research Found. educational seminar (you should go this fall), who

has a huge one under his chin, looks a bit like a goiter. Hasn't changed in

years, just a cosmetic issue. Node size by itself does not make you a candidate

for aggressive TX.

You seem to be leaning toward SLL. The ratio of lymphocyte % to granulocyte

is important. Ideally, you want the gran % to be about twice as high as the

lymph %, rule of thumb. But again, what counts there is the rate of change. If

it

has not changed in a long time, no need to get crazy. How is your white count

doing? Doubling time on that is also a good indicator....

[Guest guest]

Dear ,

Welcome, your right this is a very good place to be if you want the truth and

good advice on direction with SLL or CLL. I will be brief which for me is rare,

follow the advice you may have been given all ready or have read on this site

recently. " Go immediately and get the full round of tests provided by Quest

labs exclusively for SLL/CLL. They can be found on CLL Topics website.

http://www.clltopics.org/PI/PrognosticandMonitoringTestPackages.htm

Show this list to your doctor and have him order them all immediately. That is

the only way you will ever know what you have, exactly what kind you have and

how much of it you have and what to do about it. Everything else you do is so

much BS. until you get that done.

Welcome to hard truth and reality. Truly Welcome.

Kurt

-------------- Original message ----------------------

From: Baker <lbakerishere@...>

[Guest guest]

Kurt,

Thanks!! I am doing as you suggested.

thel.g@... wrote:

Dear ,

Welcome, your right this is a very good place to be if you want the truth and

good advice on direction with SLL or CLL. I will be brief which for me is rare,

follow the advice you may have been given all ready or have read on this site

recently. " Go immediately and get the full round of tests provided by Quest

labs exclusively for SLL/CLL. They can be found on CLL Topics website.

http://www.clltopics.org/PI/PrognosticandMonitoringTestPackages.htm

Show this list to your doctor and have him order them all immediately. That is

the only way you will ever know what you have, exactly what kind you have and

how much of it you have and what to do about it. Everything else you do is so

much BS. until you get that done.

Welcome to hard truth and reality. Truly Welcome.

Kurt

-------------- Original message ----------------------

From: Baker <lbakerishere@...>

[Guest guest]

- sorry, got confused, but if he's in touch with Byrd, that's good tot.

I had not heard of Byrd being particularly aggressive, as a matter of fact I

know a number of people whom he sent home saying " no TX " . But he is one of the

foremost SLL/CLL guys in the country. He gave the CLL lecture at the 2005

seminar, by the way.

The seminar I refer to is put on every fall by the Lymphoma Research

Foundation, in my opinion a top organization. (I'll have some more to say about

that,

I hope, before the end of the month.)

They are always in a different city, last year Atlanta, the year before, San

Francisco. I heard rumors that Chicago is next. It is well worth attending.

There are some problems: They cram too much stuff into two days, it's almost

impossible to follow it all. So one has to pick one's sessions carefully.

Last year I was very pleased because due to pressure from us (CIG - The CLL

Information Group, I already have you signed up) they put on an EXTRA session

for SLL/CLL. And we had a good patient turnout.

Those percentages don't sound bad, especially if your stable. Sounds to me

like you've got a nice, quiet time ahead.

Best of luck,

[Guest guest]

,

Thanks for the info. I think my dr. aggressive statement might have been in

reference to the clinical trials Byrd is trying--but I don't really know.

Thanks for the input, for signing me up etc. I am hoping and praying for that

quiet time ahead but if not, will face it when it comes and inhale life right

now. :-)

Again, thanks!

- sorry, got confused, but if he's in touch with Byrd, that's good tot.

I had not heard of Byrd being particularly aggressive, as a matter of fact I

know a number of people whom he sent home saying " no TX " . But he is one of the

foremost SLL/CLL guys in the country. He gave the CLL lecture at the 2005

seminar, by the way.

The seminar I refer to is put on every fall by the Lymphoma Research

Foundation, in my opinion a top organization. (I'll have some more to say about

that,

I hope, before the end of the month.)

They are always in a different city, last year Atlanta, the year before, San

Francisco. I heard rumors that Chicago is next. It is well worth attending.

There are some problems: They cram too much stuff into two days, it's almost

impossible to follow it all. So one has to pick one's sessions carefully.

Last year I was very pleased because due to pressure from us (CIG - The CLL

Information Group, I already have you signed up) they put on an EXTRA session

for SLL/CLL. And we had a good patient turnout.

Those percentages don't sound bad, especially if your stable. Sounds to me

like you've got a nice, quiet time ahead.

Best of luck,