Re: CML again in one family

[Guest guest]

Therese:

I have also been told that CML is not a genetic disease, but brought

upon by environmental or industrial exposure to various chemicals.

There are loosely related theories that tie the disease to a immune

deficiency related issues like Epstein-Barr Virus that weaken your

immune system and the exposure to chemicals like Benzene or others

cause more severe damage in your weakened state. I am not sure

how much these theories have been explored, I have just been told

about them in various clinics and appointments, as well as certain

papers that have been published or that I have read over the years.

Having said all that, I have seen multiple family members get the

same type of cancer if they are all exposed to the same thing, but these

cases were not related to CML. Most of these were related to lung

cancer, brain tumors or something along those lines. I have not heard

of multiple family members CML and I would think you would have to

look at the types of exposures that you had in common. In these cases

the most likely exposures were related to water, soil or industrial types

of exposure in the same geographic area (for instance a local swimming

hole where families would go and swim, not knowing that industrial

chemicals were being flushed into the water from a plant upstream.)

This is very interesting and I am hoping that you do some research and

investigation and see what and where the common threads may be.

Matt

Florida

In a message dated 10/3/2009 10:15:54 A.M. Eastern Daylight Time,

kidme2003@... writes:

Hey Everyone:

I was diaignosed in 05, that is when I joined the group. My story with

CML is coming out very good on the other side. I had a BMT in 07 and

currently I am CML and GVHD free and back at work. I am truly fortunate to be

coming out the other side of this process.

I have a question to present to the group. My Dad called this week, he

has been diaignosed with CML and is starting treatment with Gleevec. Has

anyone heard of Families with numerous family members with CML? I was told as

I was being treated this is an enviromental disease, not genetic. I am

just wondering if this has happened with anyone else being treated.

Due to the vast knowledge I have from this group and my experiences, it

was nice to tell him that CML is not a death sentence. Thank you all for

your help. I have given him and his wife this site for information and

support. I look forward to responses.

Therese

[Non-text portions of this message have been removed]

[Guest guest]

WOW! NO, I NEVER HEARD OF ANOTHER FAMILY GETTING CML.  TALK BEING UNLUCKY AND

LUCKY AT THE SAME TIME.  UNLUCKY FOR YOU BOTH TO HAVE CML AND LUCKY FOR HIM HE

HAS YOU TO HELP HIM THROUGH THIS FIRST HAND AND LUCKY FOR YOU BOTH TO HAVE THIS

SITE TO HELP YOU BOTH.  GOOD LUCK TO YOUR DAD, AND BLESSINGS TO BOTH OF YOU,

BOBBY

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995

Interferon/9 weeks/hydroxyurea/5 years

02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 -

Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840  -   Zavie's Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 trial/U of

Michigan

01/09/ - PCR 5.69

02/13/09 - XL228 trial ended due to side effects

o4/13/09 - Ariad Trial U of Michigan

09/09/09 - PCR 0.017

04/13/09 - Ariad trial at U. of Michigan

09/09/09 - PCR 0.017

04/13/09 - Ariad trial, U. of Michigan

09/08/09 - PCR 0.017

From: Therese Stone <kidme2003@...>

Subject: [ ] CML again in one family

Date: Saturday, October 3, 2009, 10:15 AM

 

Hey Everyone:

 

I was diaignosed in 05, that is when I joined the group.  My story with CML is

coming out very good on the other side.  I had a BMT in 07 and currently I am

CML and GVHD free and back at work. I am truly fortunate to be coming out the

other side of this process.

 

I have a question to present to the group.  My Dad called this week, he has been

diaignosed with CML and is starting treatment with Gleevec.  Has anyone heard of

Families with numerous family members with CML?  I was told as I was being

treated this is an enviromental disease, not genetic.  I am just wondering if

this has happened with anyone else being treated.

 

Due to the vast knowledge I have from this group and my experiences, it was nice

to tell him that CML is not a death sentence.  Thank you all for your help.  I

have given him and his wife this site for information and support.  I look

forward to responses.

 

Therese

[Guest guest]

Yes, I have friends -- twin sisters -- who have CML and whose other siblings

(but not all) and parents did too. They grew up next to a large farm and blame

the exposure to pesticides, which were bomblasted regularly from the air and

formed clouds over their land. An older sibling who was born after they moved

away never contracted the disease.

From: kidme2003@...

Date: Sat, 3 Oct 2009 07:15:15 -0700

Subject: [ ] CML again in one family

Hey Everyone:

I was diaignosed in 05, that is when I joined the group. My story with CML is

coming out very good on the other side. I had a BMT in 07 and currently I am

CML and GVHD free and back at work. I am truly fortunate to be coming out the

other side of this process.

I have a question to present to the group. My Dad called this week, he has been

diaignosed with CML and is starting treatment with Gleevec. Has anyone heard of

Families with numerous family members with CML? I was told as I was being

treated this is an enviromental disease, not genetic. I am just wondering if

this has happened with anyone else being treated.

Due to the vast knowledge I have from this group and my experiences, it was nice

to tell him that CML is not a death sentence. Thank you all for your help. I

have given him and his wife this site for information and support. I look

forward to responses.

Therese

[Guest guest]

Therese,

I have CML and have spoken with a woman who now lives in Quatamala who is 51

and has CML, her mother died of CML many many years ago way before Gleevec.

This is the only person I have talked to that has had a family member with

CML also. My onc. insures me that it isn't genetic though.

Chuck

On Sat, Oct 3, 2009 at 10:15 AM, Therese Stone <kidme2003@...> wrote:

>

>

> Hey Everyone:

>

> I was diaignosed in 05, that is when I joined the group. My story with CML

> is coming out very good on the other side. I had a BMT in 07 and currently

> I am CML and GVHD free and back at work. I am truly fortunate to be coming

> out the other side of this process.

>

> I have a question to present to the group. My Dad called this week, he has

> been diaignosed with CML and is starting treatment with Gleevec. Has anyone

> heard of Families with numerous family members with CML? I was told as I

> was being treated this is an enviromental disease, not genetic. I am just

> wondering if this has happened with anyone else being treated.

>

> Due to the vast knowledge I have from this group and my experiences, it was

> nice to tell him that CML is not a death sentence. Thank you all for your

> help. I have given him and his wife this site for information and support.

> I look forward to responses.

>

> Therese

>

>

[Guest guest]

Hey Matt:

 

I know this sounds terrible, but I haven't had much to do with my father in the

last 20 years or so.  We have a bit of a disfunctional family, my mom left all

of us when we were small children (10 kids).  The last words I knew of her was

her cause of death was Luekemia.  I don't know what type she had.

 

My father has had alot of exposure to caustic chemicals as he has worked most of

his adult life around industrial batteries.  I used to go into work with him and

was around them as a kid.  I work as an aircraft mechanic and had some extreme

toulene exposure in 2003.  I have always presumed that is where my CML came

from. 

 

 I am finding this situation very ironic and strange.  It is hard to be brought

back into the world of CML through my fathers diaignosis.  Just when I was

thinking I had escaped this, it is back again.  Sometimes I think about it and

realize I am just numb with processing it.  He has ongoing health issues and is

older.  A bone marrow transplant is out of the question, it would kill him. 

Besides there is a process to be followed with our course of treatment.  Gleevec

is a great first tier drug, and has had alot of success.

 

I couldn't tell him taking Gleevec would be easy.  I had to deal with some

severe reactions during the period I was taking it.  I was almost glad when it

stopped working and I reached for other options.  Although knowing what I know

now I wouldn't recommend a BMT quickly to anyone.  It is definetely a last teir

course of treatment.  To be used when all else is failing.  Thanks for

listening.

 

Therese

From: mtmaynor@... <mtmaynor@...>

Subject: Re: [ ] CML again in one family

Date: Saturday, October 3, 2009, 12:34 PM

 

Therese:

I have also been told that CML is not a genetic disease, but brought

upon by environmental or industrial exposure to various chemicals.

There are loosely related theories that tie the disease to a immune

deficiency related issues like Epstein-Barr Virus that weaken your

immune system and the exposure to chemicals like Benzene or others

cause more severe damage in your weakened state. I am not sure

how much these theories have been explored, I have just been told

about them in various clinics and appointments, as well as certain

papers that have been published or that I have read over the years.

Having said all that, I have seen multiple family members get the

same type of cancer if they are all exposed to the same thing, but these

cases were not related to CML. Most of these were related to lung

cancer, brain tumors or something along those lines. I have not heard

of multiple family members CML and I would think you would have to

look at the types of exposures that you had in common. In these cases

the most likely exposures were related to water, soil or industrial types

of exposure in the same geographic area (for instance a local swimming

hole where families would go and swim, not knowing that industrial

chemicals were being flushed into the water from a plant upstream.)

This is very interesting and I am hoping that you do some research and

investigation and see what and where the common threads may be.

Matt

Florida

In a message dated 10/3/2009 10:15:54 A.M. Eastern Daylight Time,

kidme2003 (DOT) com writes:

Hey Everyone:

I was diaignosed in 05, that is when I joined the group. My story with

CML is coming out very good on the other side. I had a BMT in 07 and

currently I am CML and GVHD free and back at work. I am truly fortunate to be

coming out the other side of this process.

I have a question to present to the group. My Dad called this week, he

has been diaignosed with CML and is starting treatment with Gleevec. Has

anyone heard of Families with numerous family members with CML? I was told as

I was being treated this is an enviromental disease, not genetic. I am

just wondering if this has happened with anyone else being treated.

Due to the vast knowledge I have from this group and my experiences, it

was nice to tell him that CML is not a death sentence. Thank you all for

your help. I have given him and his wife this site for information and

support. I look forward to responses.

Therese

[Guest guest]

Hey a:

 

I hope my dad and his wife come onto this site and can see that survivors like

yourself are getting on with their lives.  You are such a fighter and an

insparation for us all to keep on keeping on.  I have really learned through my

personal fight to live one day at a time and take in the good in life. 

 

 Tomorrow is my birthday, I am 51, and a 5 year plus survivor of CML and a two

year survivor of a BMT.  I am not going to work, I called off. My daughter and I

will be riding bikes in Central Park, NY then crossing the Brooklyn Bridge for a

real slice of New York pizza.  This is one of the few birthdays I am really

looking forward to.  It feels more like a celebration of life than ever before.

 

Stay strong and thank you for sharing your courage.

 

Therese 

From: Therese Stone <kidme2003 (DOT) com>

Subject: [ ] CML again in one family

groups (DOT) com

Date: Saturday, October 3, 2009, 10:15 AM

 

Hey Everyone:

 

I was diaignosed in 05, that is when I joined the group.  My story with CML is

coming out very good on the other side.  I had a BMT in 07 and currently I am

CML and GVHD free and back at work. I am truly fortunate to be coming out the

other side of this process.

 

I have a question to present to the group.  My Dad called this week, he has been

diaignosed with CML and is starting treatment with Gleevec.  Has anyone heard of

Families with numerous family members with CML?  I was told as I was being

treated this is an enviromental disease, not genetic.  I am just wondering if

this has happened with anyone else being treated.

 

Due to the vast knowledge I have from this group and my experiences, it was nice

to tell him that CML is not a death sentence.  Thank you all for your help.  I

have given him and his wife this site for information and support.  I look

forward to responses.

 

Therese

[Guest guest]

> I have a question to present to the group.  My Dad called this week, he has

been diaignosed with CML and is starting treatment with Gleevec.  Has anyone

heard of Families with numerous family members with CML?  I was told as I was

being treated this is an enviromental disease, not genetic.  I am just wondering

if this has happened with anyone else being treated.

______________________

Hi Therese,

I know of another person who's father had CML and did not live long, I think he

was diagnosed in advanced disease. Years later she was dx with CML and she is a

survivor who had been on Gleevec and now maybe Sprycel. She used to post on

several lists, now occasionally Jerry's site. Her name is Dianne DeC...(keeping

her somewhat anonymous).

I think there have been some others also who have family members with CML. The

disease is not clearly genetic because it happens so infrequently....and also

family members do share the same environment for long periods of years.

C.

[Guest guest]

I was told this was not genetic but what does the environment mean!!!????

Blessings,

JO-Dee

From: hey00nanc <ncogan@...>

Subject: [ ] Re: CML again in one family

Date: Sunday, October 4, 2009, 5:32 PM

 

> I have a question to present to the group.  My Dad called this week, he has

been diaignosed with CML and is starting treatment with Gleevec.  Has anyone

heard of Families with numerous family members with CML?  I was told as I was

being treated this is an enviromental disease, not genetic.  I am just wondering

if this has happened with anyone else being treated.

____________ _________ _

Hi Therese,

I know of another person who's father had CML and did not live long, I think he

was diagnosed in advanced disease. Years later she was dx with CML and she is a

survivor who had been on Gleevec and now maybe Sprycel. She used to post on

several lists, now occasionally Jerry's site. Her name is Dianne DeC...(keeping

her somewhat anonymous).

I think there have been some others also who have family members with CML. The

disease is not clearly genetic because it happens so infrequently. ...and also

family members do share the same environment for long periods of years.

C.

[Guest guest]

>

> I was told this was not genetic but what does the environment mean!!!????

>

> Blessings,

>

> JO-Dee

___________________

Hi JO-Dee,

Environmental things that can lead to cancers include being exposed to lots of

pesticides, possibly benezene at work, problems with drinking water, toxic

ground, etc. Sometimes they discover clusters of people being diagnosed with the

same or similar cancers in a geographic location and it is something about the

location that has lead to the cancers (but not in all people)....that's the

environmental component.

To Ruth M.- I think it is generally accepted that there are some families that

are cancer prone. It is possible that the small genetic pre-dispositions have

not been discovered yet. Your family seems to have way beyond the statistical

cancer incidence that you would expect. Sounds like the present generation is

doing well with the new treatments and being cancer warriors.

There are also books written on the 'cancer prone personality'. This mostly has

to do with how the person deals with stress and if stress hormones are always

elevated....but this could lead to many health problems, including heart disease

which is still the biggest killer in the US.

C.

[Guest guest]

I have numerous cases in my family all on one side, in each generation since my

Great Granddad. I have also been told it is not genetic, but I tend to think

that they just don't know that it is yet. The only difference with me is that I

am the only female. Everyone else has been male. Anyway like I said I think

there is a genetic something or other in there. But I'm not a researcher.

Amy B.

>

> Hey Everyone:

>  

> I was diaignosed in 05, that is when I joined the group.  My story with CML is

coming out very good on the other side.  I had a BMT in 07 and currently I am

CML and GVHD free and back at work. I am truly fortunate to be coming out the

other side of this process.

>  

> I have a question to present to the group.  My Dad called this week, he has

been diaignosed with CML and is starting treatment with Gleevec.  Has anyone

heard of Families with numerous family members with CML?  I was told as I was

being treated this is an enviromental disease, not genetic.  I am just wondering

if this has happened with anyone else being treated.

>  

> Due to the vast knowledge I have from this group and my experiences, it was

nice to tell him that CML is not a death sentence.  Thank you all for your

help.  I have given him and his wife this site for information and support.  I

look forward to responses.

>  

> Therese

>

>

>

>

>