Re: just found out that I have Cll

May 10, 2006

Dear , I think you will find CLL is not much of a

problem for you. My brother lived 17 very active years

with it, dying at 77. I know others who have lived

between 20 and 30 years with it and are still going

strong, Even though I have stage 4 SLL and Stage 1

CLL, I feel great, exercise daily at the gym, and

continue all my activities. I was diagnosed in 2004

and still have had no treatments, and my blood levels

remain normal, although I have lots of enlarged

lymphnodes in my belly. That's why I'm stage 4 SLL.

Tomorrow I'm going in to the hospital for knee

replacement surgery, but I'll look to hear how you are

doing when I get back to my computer. You may want to

use other support groups too: cll@...

There is also a website called CLL Forum that is a

support group, and CLL Topics is a website that is

full of information. Carolyn,, age 77.

--- LINDA WARNER <warner@...> wrote:

> Hello, I just found out in March of this year that I

> have Cll. I had what I thought to be cyst removed

> from my neck and it turned out to be lymph nodes.

> When my surgeon told me what the path report showed

> I was in shock and could not hold back the tears.

> That very day I saw a oncologist and he tried to

> explain that cll isI a slow growing cancer and that

> many persons die of old age or something else will

> kill them before cll will. He ordered a CT scan of

> my lymph nodes and a bone marrow biopsy was done

> (fun,fun). He referred me to Dr Keating at the MD

> Cancer Center in Houston. My husband and I

> just got back about a week and a half ago. I just

> wanted to talk with someone with CLL. Dr Keating

> had 14 vials of blood drawn and told me that he

> thinks I will live a long life. He said at the

> beginning stages all they do for now is treat the

> symptoms. He put me on Ritalin to help give me more

> enery but it kept me up at night so I discontinued

> taking it. I am also in a clinical study to where I

> drink " heavy water " . I will drink this water for 6

> weeks and have my blood drawn 4 or 5 times. The

> heavy water marks my cells to let researches see how

> many of my cells die and how many are born. I do

> not know anyone else that has cll and would love to

> talk with someone. I cant wait to see who will

> reply so I can relate to someone and how they are

> feeling at this time. Thanks for listing!

>

> [Non-text portions of this message have been

> removed]

>

May 10, 2006

,

I am sorry you joined the CLL group, but since you had no choice, welcome. Your

seeing Dr. Keating is the 100% correct thing to do. He or one of his fellow

Consortium members are at the cutting edge of treatment and research of CLL. My

wife, dx 1991 tx 2002, sees Dr. Kipps in San Diego, another Consortium member,

and he acts as the commanding general of her fight with a local hem/onc

following her and helping with treatment if necessary.

You are in the best of hands and have a good chance for top notch results.

Good health and good luck,

Dan Hill

just found out that I have Cll

Hello, I just found out in March of this year that I have Cll. I had what I

thought to be cyst removed from my neck and it turned out to be lymph nodes.

When my surgeon told me what the path report showed I was in shock and could not

hold back the tears. That very day I saw a oncologist and he tried to explain

that cll isI a slow growing cancer and that many persons die of old age or

something else will kill them before cll will. He ordered a CT scan of my lymph

nodes and a bone marrow biopsy was done (fun,fun). He referred me to Dr Keating

at the MD Cancer Center in Houston. My husband and I just got back

about a week and a half ago. I just wanted to talk with someone with CLL. Dr

Keating had 14 vials of blood drawn and told me that he thinks I will live a

long life. He said at the beginning stages all they do for now is treat the

symptoms. He put me on Ritalin to help give me more enery but it kept ! me up

at night so I discontinued taking it. I am also in a clinical study to where I

drink " heavy water " . I will drink this water for 6 weeks and have my blood

drawn 4 or 5 times. The heavy water marks my cells to let researches see how

many of my cells die and how many are born. I do not know anyone else that has

cll and would love to talk with someone. I cant wait to see who will reply so I

can relate to someone and how they are feeling at this time. Thanks for

listing!

May 10, 2006

Hello Carolyn

Thanks so much for writing me back. Its so good to talk with others who

understand. I hope your knee replacement goes well. I will be going back

to my oncologist next week and will ask if there is any support groups in my

area. Thanks for the encouragement and take care of that knee.

Re: just found out that I have Cll

> Dear , I think you will find CLL is not much of a

> problem for you. My brother lived 17 very active years

> with it, dying at 77. I know others who have lived

> between 20 and 30 years with it and are still going

> strong, Even though I have stage 4 SLL and Stage 1

> CLL, I feel great, exercise daily at the gym, and

> continue all my activities. I was diagnosed in 2004

> and still have had no treatments, and my blood levels

> remain normal, although I have lots of enlarged

> lymphnodes in my belly. That's why I'm stage 4 SLL.

> Tomorrow I'm going in to the hospital for knee

> replacement surgery, but I'll look to hear how you are

> doing when I get back to my computer. You may want to

> use other support groups too: cll@...

> There is also a website called CLL Forum that is a

> support group, and CLL Topics is a website that is

> full of information. Carolyn,, age 77.

> --- LINDA WARNER <warner@...> wrote:

>

>> Hello, I just found out in March of this year that I

>> have Cll. I had what I thought to be cyst removed

>> from my neck and it turned out to be lymph nodes.

>> When my surgeon told me what the path report showed

>> I was in shock and could not hold back the tears.

>> That very day I saw a oncologist and he tried to

>> explain that cll isI a slow growing cancer and that

>> many persons die of old age or something else will

>> kill them before cll will. He ordered a CT scan of

>> my lymph nodes and a bone marrow biopsy was done

>> (fun,fun). He referred me to Dr Keating at the MD

>> Cancer Center in Houston. My husband and I

>> just got back about a week and a half ago. I just

>> wanted to talk with someone with CLL. Dr Keating

>> had 14 vials of blood drawn and told me that he

>> thinks I will live a long life. He said at the

>> beginning stages all they do for now is treat the

>> symptoms. He put me on Ritalin to help give me more

>> enery but it kept me up at night so I discontinued

>> taking it. I am also in a clinical study to where I

>> drink " heavy water " . I will drink this water for 6

>> weeks and have my blood drawn 4 or 5 times. The

>> heavy water marks my cells to let researches see how

>> many of my cells die and how many are born. I do

>> not know anyone else that has cll and would love to

>> talk with someone. I cant wait to see who will

>> reply so I can relate to someone and how they are

>> feeling at this time. Thanks for listing!

>>

>> [Non-text portions of this message have been

>> removed]

>>

May 10, 2006

Dan

Thank you so much for writting me. It sounds like your wife is in good

hands. Is she in the early stages or has the CLl got any worse since she

was diagnosed in 1991. I have so many questions and will try and find a

support group in my area. Give my reguards to your wife and thanks again.

just found out that I have Cll

>

> Hello, I just found out in March of this year that I have Cll. I had

> what I thought to be cyst removed from my neck and it turned out to be

> lymph nodes. When my surgeon told me what the path report showed I was in

> shock and could not hold back the tears. That very day I saw a oncologist

> and he tried to explain that cll isI a slow growing cancer and that many

> persons die of old age or something else will kill them before cll will.

> He ordered a CT scan of my lymph nodes and a bone marrow biopsy was done

> (fun,fun). He referred me to Dr Keating at the MD Cancer Center

> in Houston. My husband and I just got back about a week and a half ago.

> I just wanted to talk with someone with CLL. Dr Keating had 14 vials of

> blood drawn and told me that he thinks I will live a long life. He said

> at the beginning stages all they do for now is treat the symptoms. He put

> me on Ritalin to help give me more enery but it kept ! me up at night so I

> discontinued taking it. I am also in a clinical study to where I drink

> " heavy water " . I will drink this water for 6 weeks and have my blood

> drawn 4 or 5 times. The heavy water marks my cells to let researches see

> how many of my cells die and how many are born. I do not know anyone else

> that has cll and would love to talk with someone. I cant wait to see who

> will reply so I can relate to someone and how they are feeling at this

> time. Thanks for listing!

>

May 10, 2006

Hi ,

Our stories sound similiar in a way. I went to my doctor because I

felt a lump under my chin near my throat. While he referred me to a

specialist, he also ran a CBC which showed a slightly elevated WBC.

He ran the test again the following week and it was just slightly

higher. In the meantime, the specialist removed what he thought was

a cyst only to find out that it was a lymph node. The pathology

report said CLL and my doctor also said the same thing. That was in

July, 2004. I recently went to MDA because my white count has

suddenly started going up fast and my hem/onc thought another

opinion was needed. I have lymph nodes all over that are swollen.

Otherwise I feel fine - no other symptoms. The doctor at MDA thinks

that I may need treatment by the end of the year. I'm hoping not.

It's strange to welcome someone to the group, but I'm glad that you

found us as support is important. Keep in touch and write often.

You will find that this group, CLL Forum and the discussion board at

the Lymphoma and Leukemia Society has many members who will be able

to keep you well informed.

Chris

May 11, 2006

: I was diagnosed with CLL, stage 0 in March also, so I know

what you are going through. I am going to Dr. Byrd, a member of the

consortium others have told you about. I am only 44, and if I

understand correctly, CLL is rare in people under 45. Most people

live a long time with no problems. The best thing is to take care

of yourself and live to the fullest.

>

> Hello, I just found out in March of this year that I have Cll. I

had what I thought to be cyst removed from my neck and it turned

out to be lymph nodes. When my surgeon told me what the path report

showed I was in shock and could not hold back the tears. That very

day I saw a oncologist and he tried to explain that cll isI a slow

growing cancer and that many persons die of old age or something

else will kill them before cll will. He ordered a CT scan of my

lymph nodes and a bone marrow biopsy was done (fun,fun). He

referred me to Dr Keating at the MD Cancer Center in

Houston. My husband and I just got back about a week and a half

ago. I just wanted to talk with someone with CLL. Dr Keating had

14 vials of blood drawn and told me that he thinks I will live a

long life. He said at the beginning stages all they do for now is

treat the symptoms. He put me on Ritalin to help give me more enery

but it kept me up at night so I discontinued taking it. I am also

in a clinical study to where I drink " heavy water " . I will drink

this water for 6 weeks and have my blood drawn 4 or 5 times. The

heavy water marks my cells to let researches see how many of my

cells die and how many are born. I do not know anyone else that has

cll and would love to talk with someone. I cant wait to see who

will reply so I can relate to someone and how they are feeling at

this time. Thanks for listing!

>

May 12, 2006

I am sorry you have been diagnosed with CLL, but I hope those of us that are

older can be of help and support to you.

I was diagnosed at 57, but again one does not know how long the condition

has been as no everybody has routine test and check ups. I am now 61 and

having a normal life.

I know people have lived with CLL for 20 years and others a lot longer. So I

feel it is the luck of the draw, some people have other chronic conditions

and we to deal with its own problems, we have CLL.

There is a lot of information there for us to see and have the correct test

to help our future decisions.

Please feel free to post and ask questions, there are a very good bunch of

knowledgeable people in this group.

regards

Chonette (UK)

dx 10-02

Nutritional and detox approach for several month.

2005 bone marrow failing starting 2 mg. Chlorambucil 11 weeks over the year.

01-2006 - Low doses chlorambucil (6 mg. a day) 14 days on 14 days off in

combination with Rituximab once a month for 4 months.

Hb and platelets still low WBC normal, feeling well all over.

Will have another 2 infusions (end May and end June)

Message 1

From: " M_Hauenstein " m_hauenstein@...

Date: Thu May 11, 2006 4:48pm(PDT)

Subject: Re: just found out that I have Cll

: I was diagnosed with CLL, stage 0 in March also, so I know

what you are going through. I am going to Dr. Byrd, a member of the

consortium others have told you about. I am only 44, and if I

understand correctly, CLL is rare in people under 45. Most people

live a long time with no problems. The best thing is to take care

of yourself and live to the fullest.

May 13, 2006

Hello, I received a fax from Chonette. Thanks for writting. You mentioned

that you are involved in a nutritional & detox program. A friend of mine is

encouraging me to call a nutritionist and talking with me about detoxing my

body of any impurties. Can you tell me what you are doing in this reguard.

Thanks

Re: just found out that I have Cll

>

> : I was diagnosed with CLL, stage 0 in March also, so I know

> what you are going through. I am going to Dr. Byrd, a member of the

> consortium others have told you about. I am only 44, and if I

> understand correctly, CLL is rare in people under 45. Most people

> live a long time with no problems. The best thing is to take care

> of yourself and live to the fullest.

>

May 13, 2006

Thank you for writting. I too am in my 40's (just turned 48 in Feb) It

good to talk with someone in the early stages. Are the oncologist just

watching you too?

Re: just found out that I have Cll

> : I was diagnosed with CLL, stage 0 in March also, so I know

> what you are going through. I am going to Dr. Byrd, a member of the

> consortium others have told you about. I am only 44, and if I

> understand correctly, CLL is rare in people under 45. Most people

> live a long time with no problems. The best thing is to take care

> of yourself and live to the fullest.

>

>>

>> Hello, I just found out in March of this year that I have Cll. I

> had what I thought to be cyst removed from my neck and it turned

> out to be lymph nodes. When my surgeon told me what the path report

> showed I was in shock and could not hold back the tears. That very

> day I saw a oncologist and he tried to explain that cll isI a slow

> growing cancer and that many persons die of old age or something

> else will kill them before cll will. He ordered a CT scan of my

> lymph nodes and a bone marrow biopsy was done (fun,fun). He

> referred me to Dr Keating at the MD Cancer Center in

> Houston. My husband and I just got back about a week and a half

> ago. I just wanted to talk with someone with CLL. Dr Keating had

> 14 vials of blood drawn and told me that he thinks I will live a

> long life. He said at the beginning stages all they do for now is

> treat the symptoms. He put me on Ritalin to help give me more enery

> but it kept me up at night so I discontinued taking it. I am also

> in a clinical study to where I drink " heavy water " . I will drink

> this water for 6 weeks and have my blood drawn 4 or 5 times. The

> heavy water marks my cells to let researches see how many of my

> cells die and how many are born. I do not know anyone else that has

> cll and would love to talk with someone. I cant wait to see who

> will reply so I can relate to someone and how they are feeling at

> this time. Thanks for listing!

>>

May 14, 2006

So far. I go back to Dr. Byrd on the 22nd. From what I understand,

he has done what is called a FISH test to see what my prognosis

might be. The Flow cytometry test just confirmed the diagnosis of

CLL.

> >>

> >> Hello, I just found out in March of this year that I have Cll.

I

> > had what I thought to be cyst removed from my neck and it turned

> > out to be lymph nodes. When my surgeon told me what the path

report

> > showed I was in shock and could not hold back the tears. That

very

> > day I saw a oncologist and he tried to explain that cll isI a

slow

> > growing cancer and that many persons die of old age or something

> > else will kill them before cll will. He ordered a CT scan of my

> > lymph nodes and a bone marrow biopsy was done (fun,fun). He

> > referred me to Dr Keating at the MD Cancer Center in

> > Houston. My husband and I just got back about a week and a half

> > ago. I just wanted to talk with someone with CLL. Dr Keating

had

> > 14 vials of blood drawn and told me that he thinks I will live a

> > long life. He said at the beginning stages all they do for now

is

> > treat the symptoms. He put me on Ritalin to help give me more

enery

> > but it kept me up at night so I discontinued taking it. I am

also

> > in a clinical study to where I drink " heavy water " . I will drink

> > this water for 6 weeks and have my blood drawn 4 or 5 times. The

> > heavy water marks my cells to let researches see how many of my

> > cells die and how many are born. I do not know anyone else that

has

> > cll and would love to talk with someone. I cant wait to see who

> > will reply so I can relate to someone and how they are feeling at

> > this time. Thanks for listing!

> >>

May 20, 2006

Hi .

I'm just catching up on my email after returning from MD .

My CLL diagnosis came in 1999, and I've been w & w with no treatment.

I'm now 66 years old & I wonder whether my fatigue is age or CLL --

no other symptoms. Tho some of my lymph nodes were slightly

enlarged in 1999, they have not grown since then.

I hope this encourages you.

I went to MD this week to enter their CLL vaccine clinical trial.

Since I'm expecting to wait 8 months before receiving my first

vaccination, it'll be many months before any results are known.

It will be interesting to learn of the results of your clinical trial.

Best wishes,

wayne

LINDA WARNER <warner@...> wrote: