RE: annoying questions about cml

[Guest guest]

Wow, I dont post much but this chain really got me thinking. I have told

all my friends and family. I find that when I am struggling with side

efforts or just need an ear to listen to me vent, I find that there is always a

concerned friend there to help me. I CAN;T imagine struggling with this

alone....It would be a dark and eerie place. There has been countless times

be it while throwing up, too sick to get out of bed or off the sofa,

sitting by my side while getting hydration or just running me to the store to be

with me when the fatigue is kicking my butt that I have counted on friends

and family to do what they really want to do.....Be at my side to help in

some small way. I can't imagine going this alone. This is cancer, it is

never complete remission in which we can stop taking daily chemotherapy, It

plays havoc on our body on a dialy basis, maybe some worse then others. I

would be pissed if a family member kept something like this a secret. I

would like they really didn't trust me to be there for them. Just my

opinion, but I would think people would want to be there to support me, as I

would them.

Happy Holidays everyone!

CML 5/13/05

Gleevec 600-800mg until 8/07

Spyrcel 100mg since 9/07

PCRU

Wife and mommy to 3 (14,10,8)

In a message dated 12/22/2009 10:52:51 A.M. Central Standard Time,

traceyincanada@... writes:

I agree with you Bobby. If I found out that someone I cared about was

keeping a secret this big from me, I'd be devastated and wouldn't be able to

trust that person ever again.

When I share my story with people they always tell me how inspiring it is.

How humbling it is to know that you are an inspiration to someone else!

Tracey

>

> From: Sharon Teichera <onthewtr@..o>

> Subject: RE: [ ] annoying questions about cml

> _@..._ (mailto: )

> Date: Tuesday, December 22, 2009, 10:25 AM

>

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> Â

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>

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>

>

> I agree.

>

>

>

> I don't tell anyone either. Really, only my family and a few close

friends

>

> know. But other then that I keep it to myself. No one would even

suspect.

>

>

>

> Sharon

>

>

>

> _____

>

>

>

> From: groups (DOT) com [mailto:@ From: groups (DOT) com

>

> nchandoaol (DOT) com

>

> Sent: Tuesday, December 22, 2009 6:09 AM

>

> groups (DOT) com

>

> Subject: [ ] annoying questions about cml

>

>

>

> It is confusing to explain that we are not really in remission, or we

are

>

> not really on chemo. Why take all the time? I just don't tell anyone

>

> about my cml. That way I don't have to explain anything! I have only

told a

>

> couple of people and that's the way I like it. I'm glad to have forums

like

>

> this one if I have a need to discuss it with someone.

>

> in NY

>

>

>

>

[Guest guest]

I agree.

I don't tell anyone either. Really, only my family and a few close friends

know. But other then that I keep it to myself. No one would even suspect.

Sharon

_____

From: [mailto: ] On Behalf Of

nchando@...

Sent: Tuesday, December 22, 2009 6:09 AM

Subject: [ ] annoying questions about cml

It is confusing to explain that we are not really in remission, or we are

not really on chemo. Why take all the time? I just don't tell anyone

about my cml. That way I don't have to explain anything! I have only told a

couple of people and that's the way I like it. I'm glad to have forums like

this one if I have a need to discuss it with someone.

in NY

[Guest guest]

I must be  some kind of freak.  From day ONE I told my 6 children I have CML,

it is not a secret, I don't care who knows it, I don't care who wants to talk

about it.  In the open, that's how I like things to be.  And we ARE on chemo,

only in pill form. The fact that Medicare does not treat it like chemo because

it is a pill does not change the fact that it is chemo.

And everyone I know, and everyone the kids know, know I am in a trial and have

been in 5 others, and they all seem to want to know as much about it as

possible. If I had to live my life as a secret, and never let the cat out of the

bag, and not talk about it I think I would have not made it this far, and it's

almost 15 years!  But, to each his own, whatever floats your boat.  Enjoy the

holidays everyone , this will be my 14th Xmas with cml, hooray!!

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

o2/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

#840 Zavie's Zero Club

From: Sharon Teichera <onthewtr@...>

Subject: RE: [ ] annoying questions about cml

Date: Tuesday, December 22, 2009, 10:25 AM

 

I agree.

I don't tell anyone either. Really, only my family and a few close friends

know. But other then that I keep it to myself. No one would even suspect.

Sharon

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

nchandoaol (DOT) com

Sent: Tuesday, December 22, 2009 6:09 AM

groups (DOT) com

Subject: [ ] annoying questions about cml

It is confusing to explain that we are not really in remission, or we are

not really on chemo. Why take all the time? I just don't tell anyone

about my cml. That way I don't have to explain anything! I have only told a

couple of people and that's the way I like it. I'm glad to have forums like

this one if I have a need to discuss it with someone.

in NY

[Guest guest]

I agree with you Bobby. If I found out that someone I cared about was keeping a

secret this big from me, I'd be devastated and wouldn't be able to trust that

person ever again.

When I share my story with people they always tell me how inspiring it is. How

humbling it is to know that you are an inspiration to someone else!

Tracey

>

> From: Sharon Teichera <onthewtr@...>

> Subject: RE: [ ] annoying questions about cml

>

> Date: Tuesday, December 22, 2009, 10:25 AM

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

>

>

>

>

> I agree.

>

>

>

> I don't tell anyone either. Really, only my family and a few close friends

>

> know. But other then that I keep it to myself. No one would even suspect.

>

>

>

> Sharon

>

>

>

> _____

>

>

>

> From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

>

> nchandoaol (DOT) com

>

> Sent: Tuesday, December 22, 2009 6:09 AM

>

> groups (DOT) com

>

> Subject: [ ] annoying questions about cml

>

>

>

> It is confusing to explain that we are not really in remission, or we are

>

> not really on chemo. Why take all the time? I just don't tell anyone

>

> about my cml. That way I don't have to explain anything! I have only told a

>

> couple of people and that's the way I like it. I'm glad to have forums like

>

> this one if I have a need to discuss it with someone.

>

> in NY

>

>

>

>

[Guest guest]

Well, I'll join you on the freak boat then.

Actually, I don't mind telling people that I am on an oral chemo pill...

different side effects is usually my short answer.

But, one of the reasons I like to tell people is because... well, I LOOK

normal. I know people that I talk to generally go away with a lesson

that: you can't always judge a person by how they look. You never really

know what is going on in someone's life at a specific time. Sit down at the

mall one day and look at all the people going through there. Many of those

people are dealing with things we just cannot see. I think it has opened my

eyes for my husband- usually. Someone- who looks healthy - will be walking

slow or driving crazy or just not paying attention walking out of the

store... but we don't know what they are thinking. Death of a loved one,

sickness, sadness - even fear, anxiety and sometimes excitement.. all of

those are things you just cannot see, especially if a person does not want

you to know. And, honestly, that is what I think about when I tell someone I

have luekemia. Because that is the first thing they'd say - you don't look

sick.

Tammy

_____

From: ROBERTA DOYLE [mailto:rcd1929@...]

Sent: Tuesday, December 22, 2009 11:19 AM

Subject: RE: [ ] annoying questions about cml

I must be some kind of freak. From day ONE I told my 6 children I have

CML, it is not a secret, I don't care who knows it, I don't care who wants

to talk about it. In the open, that's how I like things to be. And we ARE

on chemo, only in pill form. The fact that Medicare does not treat it like

chemo because it is a pill does not change the fact that it is chemo.

And everyone I know, and everyone the kids know, know I am in a trial and

have been in 5 others, and they all seem to want to know as much about it as

possible. If I had to live my life as a secret, and never let the cat out of

the bag, and not talk about it I think I would have not made it this far,

and it's almost 15 years! But, to each his own, whatever floats your boat.

Enjoy the holidays everyone , this will be my 14th Xmas with cml, hooray!!

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

o2/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

#840 Zavie's Zero Club

From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net>

net>

Subject: RE: [ ] annoying questions about cml

groups (DOT) <mailto:%40> com

Date: Tuesday, December 22, 2009, 10:25 AM

I agree.

I don't tell anyone either. Really, only my family and a few close friends

know. But other then that I keep it to myself. No one would even suspect.

Sharon

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

nchandoaol (DOT) com

Sent: Tuesday, December 22, 2009 6:09 AM

groups (DOT) com

Subject: [ ] annoying questions about cml

It is confusing to explain that we are not really in remission, or we are

not really on chemo. Why take all the time? I just don't tell anyone

about my cml. That way I don't have to explain anything! I have only told a

couple of people and that's the way I like it. I'm glad to have forums like

this one if I have a need to discuss it with someone.

in NY

[Guest guest]

I did not mean I live my life a secret!

Bobby

Everyone I know knows!!! I just don't broadcast it or make it the first

topic of conversation when meeting anyone.

I did not mean that I hide it. I did say my family and friends know-who

else needs to know???

Sharon

_____

From: [mailto: ] On Behalf Of

ROBERTA DOYLE

Sent: Tuesday, December 22, 2009 8:19 AM

Subject: RE: [ ] annoying questions about cml

I must be some kind of freak. From day ONE I told my 6 children I have

CML, it is not a secret, I don't care who knows it, I don't care who wants

to talk about it. In the open, that's how I like things to be. And we ARE

on chemo, only in pill form. The fact that Medicare does not treat it like

chemo because it is a pill does not change the fact that it is chemo.

And everyone I know, and everyone the kids know, know I am in a trial and

have been in 5 others, and they all seem to want to know as much about it as

possible. If I had to live my life as a secret, and never let the cat out of

the bag, and not talk about it I think I would have not made it this far,

and it's almost 15 years! But, to each his own, whatever floats your boat.

Enjoy the holidays everyone , this will be my 14th Xmas with cml, hooray!!

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

o2/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

#840 Zavie's Zero Club

From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net>

net>

Subject: RE: [ ] annoying questions about cml

groups (DOT) <mailto:%40> com

Date: Tuesday, December 22, 2009, 10:25 AM

I agree.

I don't tell anyone either. Really, only my family and a few close friends

know. But other then that I keep it to myself. No one would even suspect.

Sharon

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

nchandoaol (DOT) com

Sent: Tuesday, December 22, 2009 6:09 AM

groups (DOT) com

Subject: [ ] annoying questions about cml

It is confusing to explain that we are not really in remission, or we are

not really on chemo. Why take all the time? I just don't tell anyone

about my cml. That way I don't have to explain anything! I have only told a

couple of people and that's the way I like it. I'm glad to have forums like

this one if I have a need to discuss it with someone.

in NY

[Guest guest]

Hi Bobby:  I totally agree with you.  Its no secret, and  my whole family and

all my friends know.  I try to answer questions they might have.  A lot of

people do not understand that we are not cured, and will be on a Chemo treatment

for the rest of our lives.

     I count my years of CML by Christmases.  I was diagnosed on Christmas

in 1998, and this makes 11 years for me.  I Thank God Everyday for where I

am.  I also Wish Everyone a Very Happy Holiday Too.

From: Sharon Teichera <onthewtrdiscobay (DOT) net>

Subject: RE: [ ] annoying questions about cml

groups (DOT) com

Date: Tuesday, December 22, 2009, 10:25 AM

 

I agree.

I don't tell anyone either. Really, only my family and a few close friends

know. But other then that I keep it to myself. No one would even suspect.

Sharon

_____

From: groups (DOT) com [mailto:] On Behalf Of

nchandoaol (DOT) com

Sent: Tuesday, December 22, 2009 6:09 AM

groups (DOT) com

Subject: [ ] annoying questions about cml

It is confusing to explain that we are not really in remission, or we are

not really on chemo. Why take all the time? I just don't tell anyone

about my cml. That way I don't have to explain anything! I have only told a

couple of people and that's the way I like it. I'm glad to have forums like

this one if I have a need to discuss it with someone.

in NY

[Guest guest]

I agree that each person has to handle their illness by their individual

personality. I personally am a beliver on the open side. When I had my heart 5

way bypass surgery in 1992 (age 52) I chose to follow my christian upbringing

and asked to be put on prayer chains asking for personal peace and healing. I

suddenly found myself on prayer chains across the united states and many

religions. When I found out in 2003 I had CML I immediately when for the prayer

chains again. It gives me personal comfort to know that I am being prayed for.

As for the questions, they really don't bother me. I occasionally have the

opportunity to explain my leukemia to young doctors that are assigned to my

primary care physicians office for training. My pat answer to " Are you on chemo

treatments?' is yes only in pill form.

To all have a joyous holiday season! To my christian counterparts a very Merry

Christmas?

H.

>

> From: Sharon Teichera <onthewtrdiscobay (DOT) net>

> Subject: RE: [ ] annoying questions about cml

> groups (DOT) com

> Date: Tuesday, December 22, 2009, 10:25 AM

>

>  

>

>

>

> I agree.

>

> I don't tell anyone either. Really, only my family and a few close friends

>

> know. But other then that I keep it to myself. No one would even suspect.

>

> Sharon

>

> _____

>

> From: groups (DOT) com [mailto:] On Behalf Of

>

> nchandoaol (DOT) com

>

> Sent: Tuesday, December 22, 2009 6:09 AM

>

> groups (DOT) com

>

> Subject: [ ] annoying questions about cml

>

> It is confusing to explain that we are not really in remission, or we are

>

> not really on chemo. Why take all the time? I just don't tell anyone

>

> about my cml. That way I don't have to explain anything! I have only told a

>

> couple of people and that's the way I like it. I'm glad to have forums like

>

> this one if I have a need to discuss it with someone.

>

> in NY

>

>

[Guest guest]

Hi Everyone

Merry Christmas

I live an open life - all my family, friends and associates know of my CML.

Not only for their benefit as they care and love me but as a safety first issue

- people

need to know who to contact what to do in an emergency or at times you may need

help and support from side effects.

I CML outed myself in articles and newspapers for attracting funds for Light the

Night.

A little daunting to say the least but once the articles were out and about -

fantastic

response. Became the beacon for all those people whose family, friends, or

friends of friends

who had every type of Leuk known.

And by the way, what an opportunity to have CML -the postives being the

wonderful opportunities

it has given me. Fund Raising, meeting people from all walks of life, making

life long friends,

cementing my goals within my family - and discarding those issues that are not

important.

I have had soup kitchens, created work and employment opportunities - had great

parties for the

community.

I see this condition as a tap on the shoulder - you are not a tourist in this

world - give meaning to it.

I do not obsess with having cancer or with finding a cure - I choose to live

with and not to live my cancer.

It just becomes part of my life. It does not dominate my life or define who I am

as a person.

This forum has wonderful mentors, there is Lottie, Bobby, Zavie, Skip, Tracey

and many other others that

I learn from and take their compassionate spirits with me -

CMLers need advocates and I salute those who are.

My message for people with CML is - if your health management is in place, you

can have a great life and I do.

Cheers

Sue (Aussie)

__________ Information from ESET NOD32 Antivirus, version of virus signature

database 4713 (20091223) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com

[Guest guest]

Hi Bobby,

I love the way you think. I have been open also since day one and never wanted

anyone to feel sorry for me, maybe some days when I need some TLC. haha. 

Have a Merry Christmas. Mine came early - I had two cells out of twelve without

the ph chromosone!! Miracles always exists. Now let's pray Len, Lottie, and

others can have the same Christmas gift.

God's Blessings,

Jackie

From: Sharon Teichera <onthewtrdiscobay (DOT) net>

Subject: RE: [ ] annoying questions about cml

groups (DOT) com

Date: Tuesday, December 22, 2009, 10:25 AM

 

I agree.

I don't tell anyone either. Really, only my family and a few close friends

know. But other then that I keep it to myself. No one would even suspect.

Sharon

_____

From: groups (DOT) com [mailto:] On Behalf Of

nchandoaol (DOT) com

Sent: Tuesday, December 22, 2009 6:09 AM

groups (DOT) com

Subject: [ ] annoying questions about cml

It is confusing to explain that we are not really in remission, or we are

not really on chemo. Why take all the time? I just don't tell anyone

about my cml. That way I don't have to explain anything! I have only told a

couple of people and that's the way I like it. I'm glad to have forums like

this one if I have a need to discuss it with someone.

in NY

[Guest guest]

Hi Jackie, so happy for you too, congratulations.  One day at a time, one cell

at a time, things are sure looking up for us.  A far cry from the Interferon

Days, no?  Have a great Xmas,  Love, Bobby

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

o2/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

#840 Zavie's Zero Club

From: Sharon Teichera <onthewtrdiscobay (DOT) net>

Subject: RE: [ ] annoying questions about cml

groups (DOT) com

Date: Tuesday, December 22, 2009, 10:25 AM

 

I agree.

I don't tell anyone either. Really, only my family and a few close friends

know. But other then that I keep it to myself. No one would even suspect.

Sharon

_____

From: groups (DOT) com [mailto:] On Behalf Of

nchandoaol (DOT) com

Sent: Tuesday, December 22, 2009 6:09 AM

groups (DOT) com

Subject: [ ] annoying questions about cml

It is confusing to explain that we are not really in remission, or we are

not really on chemo. Why take all the time? I just don't tell anyone

about my cml. That way I don't have to explain anything! I have only told a

couple of people and that's the way I like it. I'm glad to have forums like

this one if I have a need to discuss it with someone.

in NY