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Finished:

I am confused about your FYI on a BMT. Basically the BMT is a stem cell

transplant. They remove the stem cells from the donor and transfuse them into

the reciepent. Very undramatic. There is still GVHD even with a full matched

donor. I have crossed into the dark side. I have decided to go with the BMT or

stem cell transplant, whichever you prefer to call it.

Gleevec is not my gold, as I have told you before. I am grateful for all the

people that are succeeding with it. I wish it had held longer for me.

I have a matched donor and I am going for this. I am worn down by side

effects and working full time. If I don't cure this, the drugs they are

experimenting on me with are going to kill me. I am like you I, I have multiple

health issues also. I also work full time and dealing with this is becoming

crazy with endless hurdles. Before I have major organ damage from being an

experiment, I am going for the cure. The only cure known for this disease.

I wish you well, and hope your " gold " holds you forever. I would like to be

there to see my daughter Haley graduate from high school in two years. My

other daughter Morgen will be graduating from college around the same time. I

plan to be there to celebrate with them both. The way treatment is going for

me, I think I am making a wise choice,

Good luck all.

T Stone

IAintFinishedYet <kttweety@...> wrote:

Hey Group: FYI~~my 2 cents

After being given 2-5 months morbid mortality in November 2003. . .

After going through HELL and being labeled " Queen of the Side Effects " . . .

After being told that CML is no longer a terminal disease, now its a Chronic

Disease with a newly diagnosed person having a 25 year median mortality. . .

After being told that Gleevec is a maintenance medication. . .

After being told that AMS & BMS are not either/or medications for Gleevec; they

are for survivors who have became intolerant or failed Gleevec therapy. . .

After knowing survivors die from a BMT; who were otherwise surviving on Gleevec

because GVHD is a KILLER. . .or living the Gleevec life again.

After being told that CML is a Chronic Disease, much like Diabetes, for which

there's no CURE. . .

After being told that CML is a Chronic Disease, much like Diabetes, for which

there's no CURE. . .

After reaching my maximum response, I know that my demise will be from one of my

other 20 fatal/terminal/chronic diseases. . .all of which I call Chronic

Illnesses. . .

I named CML~~ my 'bug'. . .

I named Gleevec~~ my 'gold' . . .

I named Plavix/Heart Disease~~my 'platinum'

I named Pain Medications/Orthopedic Diseases~~my 'silver'

After knowing in my heart that the CURE isn't the BMT. . .it will come from

SCT~~Stem Cell Transplant. I heard that our President is vetoing the bill again.

We need to appeal to our Senators so that they over-ride him. That way the

research and development into SCT can forge ahead.

In the meantime; I say Thanx God, Dr. Drucker~~Father of Gleevec, Dr.

Talpaz~~Father of CML (doing SC research at UMCCC, the only facility in the US),

Zavie, , , Anjana, , Skip, etc., for being there for me when I

had a question or concern; and I take my 'gold' because. . .

" I AM A SURVIVOR. . .I AIN'T FINISHED YET " ! ! !

HAPPY NEW YEAR. . .I have ALL in my prayers.

" K "

" I AIN'T FINISHED YET " !!!

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I am adding my $.02 to Therese's post and K's post.

From medterms.com

> Definition of Stem cell

>

>

>

> Stem cell: One of the human body's master cells, with the ability

> to grow into any one of the body's more than 200 cell types.

>

> All stem cells are unspecialized (undifferentiated) cells that are

> characteristically of the same family type (lineage). They retain

> the ability to divide throughout life and give rise to cells that

> can become highly specialized and take the place of cells that die

> or are lost.

>

> Stem cells contribute to the body's ability to renew and repair its

> tissues. Unlike mature cells, which are permanently committed to

> their fate, stem cells can both renew themselves as well as create

> new cells of whatever tissue they belong to (and other tissues).

>

> Bone marrow stem cells, for example, are the most primitive cells

> in the marrow. From them all the various types of blood cells are

> descended. Bone marrow stem-cell transfusions (or transplants) were

> originally given to replace various types of blood cells.

So bone marrow cells are stem cells. Bone marrow is made up of

" adult " stem cells. I am thinking that you might be referring to

embryonic stem cells, which are not " adult " stem cells and MAY be

more flexible in what they do than bone marrow cells. This may be the

future of curing many diseases/conditions but we will never find out

if funding isn't put into this research (my opinion). My thought is

that there will still be GVH & rejection concerns no matter what kind

of cells are used, but embryonic/immature stem cells may produce less

" rejection " . The process right now is that the " old " stem cells are

killed off using chemo and (perhaps) radiation. You still have to get

rid of the leukemia. I don't know that this process would change if

you use embryonic/immature cells.

Good luck to both of you no matter what road you choose to travel.

Therese, feel free to email me privately or visit this site:

http://www.caringbridge.org/wi/tomneddo

My son went through an MUD BMT 5/05/05 in Minneapolis.

Barb Neddo

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Barb:

Thank you for your interptation. I appreicate it. I also will have a MUD.

How is your son doing after transplant? Do you feel that it was worth the risk

taken? Take care and best wishes.

Therese

Barb Neddo <barb.neddo@...> wrote:

I am adding my $.02 to Therese's post and K's post.

From medterms.com

> Definition of Stem cell

>

>

>

> Stem cell: One of the human body's master cells, with the ability

> to grow into any one of the body's more than 200 cell types.

>

> All stem cells are unspecialized (undifferentiated) cells that are

> characteristically of the same family type (lineage). They retain

> the ability to divide throughout life and give rise to cells that

> can become highly specialized and take the place of cells that die

> or are lost.

>

> Stem cells contribute to the body's ability to renew and repair its

> tissues. Unlike mature cells, which are permanently committed to

> their fate, stem cells can both renew themselves as well as create

> new cells of whatever tissue they belong to (and other tissues).

>

> Bone marrow stem cells, for example, are the most primitive cells

> in the marrow. From them all the various types of blood cells are

> descended. Bone marrow stem-cell transfusions (or transplants) were

> originally given to replace various types of blood cells.

So bone marrow cells are stem cells. Bone marrow is made up of

" adult " stem cells. I am thinking that you might be referring to

embryonic stem cells, which are not " adult " stem cells and MAY be

more flexible in what they do than bone marrow cells. This may be the

future of curing many diseases/conditions but we will never find out

if funding isn't put into this research (my opinion). My thought is

that there will still be GVH & rejection concerns no matter what kind

of cells are used, but embryonic/immature stem cells may produce less

" rejection " . The process right now is that the " old " stem cells are

killed off using chemo and (perhaps) radiation. You still have to get

rid of the leukemia. I don't know that this process would change if

you use embryonic/immature cells.

Good luck to both of you no matter what road you choose to travel.

Therese, feel free to email me privately or visit this site:

http://www.caringbridge.org/wi/tomneddo

My son went through an MUD BMT 5/05/05 in Minneapolis.

Barb Neddo

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Hi Therese,

Please reconsider. If your goal in life is to see your daughters graduate in

two years from now then I would suggest that you research the morbidity and

mortality rates of a BMT. Compare the BMT statistics to any of the CML

medications and the resulting answer is a no brainer. Also, be prepared to

be off work for a lengthy period of time.

Zavie

Zavie (age 68)

67 Shoreham Avenue

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

PCRU 5/02 at RVH

2.8 log reduction Sep/05

3.0 log reduction Jan/06

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

Re: [ ] CML is a disease

Finished:

I am confused about your FYI on a BMT. Basically the BMT is a stem cell

transplant. They remove the stem cells from the donor and transfuse them

into the reciepent. Very undramatic. There is still GVHD even with a full

matched donor. I have crossed into the dark side. I have decided to go

with the BMT or stem cell transplant, whichever you prefer to call it.

Gleevec is not my gold, as I have told you before. I am grateful for all

the people that are succeeding with it. I wish it had held longer for me.

I have a matched donor and I am going for this. I am worn down by side

effects and working full time. If I don't cure this, the drugs they are

experimenting on me with are going to kill me. I am like you I, I have

multiple health issues also. I also work full time and dealing with this is

becoming crazy with endless hurdles. Before I have major organ damage from

being an experiment, I am going for the cure. The only cure known for this

disease.

I wish you well, and hope your " gold " holds you forever. I would like to

be there to see my daughter Haley graduate from high school in two years.

My other daughter Morgen will be graduating from college around the same

time. I plan to be there to celebrate with them both. The way treatment is

going for me, I think I am making a wise choice,

Good luck all.

T Stone

IAintFinishedYet <kttweety@...> wrote:

Hey Group: FYI~~my 2 cents

After being given 2-5 months morbid mortality in November 2003. . .

After going through HELL and being labeled " Queen of the Side Effects " . . .

After being told that CML is no longer a terminal disease, now its a Chronic

Disease with a newly diagnosed person having a 25 year median mortality. . .

After being told that Gleevec is a maintenance medication. . .

After being told that AMS & BMS are not either/or medications for Gleevec;

they are for survivors who have became intolerant or failed Gleevec therapy.

.. .

After knowing survivors die from a BMT; who were otherwise surviving on

Gleevec because GVHD is a KILLER. . .or living the Gleevec life again.

After being told that CML is a Chronic Disease, much like Diabetes, for

which there's no CURE. . .

After being told that CML is a Chronic Disease, much like Diabetes, for

which there's no CURE. . .

After reaching my maximum response, I know that my demise will be from one

of my other 20 fatal/terminal/chronic diseases. . .all of which I call

Chronic Illnesses. . .

I named CML~~ my 'bug'. . .

I named Gleevec~~ my 'gold' . . .

I named Plavix/Heart Disease~~my 'platinum'

I named Pain Medications/Orthopedic Diseases~~my 'silver'

After knowing in my heart that the CURE isn't the BMT. . .it will come from

SCT~~Stem Cell Transplant. I heard that our President is vetoing the bill

again. We need to appeal to our Senators so that they over-ride him. That

way the research and development into SCT can forge ahead.

In the meantime; I say Thanx God, Dr. Drucker~~Father of Gleevec, Dr.

Talpaz~~Father of CML (doing SC research at UMCCC, the only facility in the

US), Zavie, , , Anjana, , Skip, etc., for being there for me

when I had a question or concern; and I take my 'gold' because. . .

" I AM A SURVIVOR. . .I AIN'T FINISHED YET " ! ! !

HAPPY NEW YEAR. . .I have ALL in my prayers.

" K "

" I AIN'T FINISHED YET " !!!

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