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Hello:

I may not be computer accessible again for a little while. They just took my

dad to the hospital in the ambulance. He has not been doing very well. I

will feel better with him in the hospital so they can stabilize him. Please

say some prayers. I may be staying at my mom's for a few days.

Jeannette

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So sorry to hear that, Jeannette. I hope that you father will be alright.

Please let us know. We'll be thinking of you.

----- Original Message -----

From: <ednettieolson@...>

< egroups>; <anncan@...>

Sent: Tuesday, December 19, 2000 11:31 AM

Subject: [ ] Re: My dad

> Hello:

>

> I may not be computer accessible again for a little while. They just took

my

> dad to the hospital in the ambulance. He has not been doing very well. I

> will feel better with him in the hospital so they can stabilize him.

Please

> say some prayers. I may be staying at my mom's for a few days.

>

> Jeannette

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Jeannette,

I was so sorry to read about your dad. You and your family are in my

prayers. Let us know how things are going when you can.

Me Mom

----------

> From: ednettieolson@...

> egroups; anncan@...

> Subject: [ ] Re: My dad

> Date: Tuesday, December 19, 2000 12:31 PM

>

> Hello:

>

> I may not be computer accessible again for a little while. They just

took my

> dad to the hospital in the ambulance. He has not been doing very well.

I

> will feel better with him in the hospital so they can stabilize him.

Please

> say some prayers. I may be staying at my mom's for a few days.

>

> Jeannette

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

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Dear Group:

I hope you do not mind my talking about my dad and what we are going through

so much. I am having a hard time dealing with all of this and the

possibility of him dieing. It helps me alot to write about things. I hope I

am not being a whining pain in the neck. Please forgive me if I am. I am

having a rather weepy night here. I want to go to bed now and try to sleep.

Something tells me I will be back though. I even dream about hospitals.

Last night was the same. I was up several times as was the night before. If

only I could find some peace with all this. I feel like I am on such a

roller coaster though. Sorry.

Jeannette

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Pat,

Thank you for your post. I am not sleeping but was glad you wrote me. I

never meant that somebody said something negative. I just feel someone

guilty if dealing with this bothers anybody. Nobody has said anything at all

to make me feel that way. I am just so caught up in the pain of all of this

with my dad. I feel so bad for him, my mother and am very very afraid of

losing him. I know others have been there dealing with the loss of a parent.

I have dealt with the loss of aunts, uncles, friends, grandparents but never

a parent. I feel like a fish out of water gasping for air. Tonight will

pass and tomorrow I will be better. It is when ever he sees his PCP, I get

to feeling so hopeless because his dr. always talks so hopeless. Others have

been on this path before me but now I am there and feeling lost and scared.

So much to deal with......their feelings, your feelings, drs., hospitals,

tests, retests, etc. He is getting so fraile and weary. He was always so

strong and sure. He is happy though. He is at peace so it seems. I should

take comfort in that. Thanks again.

Jeannette

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Jeanette,

We have never limited off topic discussions about issues that are causing

problems for people. We try to keep the posts well marked so that people

who do not care to read them can just delete them. Death is a sensitive

issue for some people and we can respect that my keeping the subject line

clear.

We all find comfort in different things and if people share from their

hearts, you will have a wide variety of thoughts to ponder. It is important

to remember that people on this list are loving and caring, if something

strikes you the wrong way - read it again with the love it is said with.

You know that you can count on this list for love, support and comfort.

Many of us have been in your shoes and it is never easy. Believe me, when

you watch a parent suffer, it is a relief when they are finally at peace.

It may be hard to believe that but watching them in pain, breaks your heart.

I hope that you are sleeping and do not see this until morning. If you are

awake tonight, I hope you are comforted by knowing that we care.

Pat

At 11:10 PM 12/27/2000 -0500, you wrote:

>Dear Group:

>

>I hope you do not mind my talking about my dad and what we are going through

>so much. I am having a hard time dealing with all of this and the

>possibility of him dieing. It helps me alot to write about things. I hope I

>am not being a whining pain in the neck. Please forgive me if I am. I am

>having a rather weepy night here. I want to go to bed now and try to sleep.

>Something tells me I will be back though. I even dream about hospitals.

>Last night was the same. I was up several times as was the night before. If

>only I could find some peace with all this. I feel like I am on such a

>roller coaster though. Sorry.

>

>Jeannette

>

>

>Our websites: http://rheumatoid.arthritis.freehosting.net/

>http://www.rasupport.webprovider.com/

>Change subscription options:

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sorry about you dad jeanette, i can't imagine... my parents are still pretty

young and somewhat healthy. i know it will be very hard for me too, i depend

on my parents alot. please do not worry about us and whine all you want or

need too. thats why we are here.

kathy

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Jeannette,

I agree with what Pat said. We are here if you need us. We all care and do

not mind " listening " about your dad. Those who do can just delete the post.

If you feel you need a break we understand that too. Just remember we are

here and thinking about you. You can e-mail privately if you want too any

time. Take care. Tery - FL

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  • 7 years later...
Guest guest

My dad's health is declining.

In one month his weakness has doubled.

I know we cannot all know the future.

Does anyone have any intuision about my dad?

Will he be around longer than a month? 6 months?

His name is .

Thanks,

Deb

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Guest guest

I'm so sorry Deb. I don't have any intuition on your fathers condition, but I'm praying for you all. Love,Stef>> My dad's health is declining.> In one month his weakness has doubled.> I know we cannot all know the future.> Does anyone have any intuision about my dad?> Will he be around longer than a month? 6 months?> His name is .> Thanks,> Deb>

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Guest guest

>

> My dad's health is declining.

> In one month his weakness has doubled.

> I know we cannot all know the future.

> Does anyone have any intuision about my dad?

> Will he be around longer than a month? 6 months?

> His name is .

> Thanks,

> Deb

>

I AM SORRY TO HEAR ABOUT YOUR FATHER! YET, YOU DO NOT SAY, " WHAT IS

ILLNESS IS. " MY MOTHER WHOM I THOUGHT WOULD LIVE FOREVER AND DIDN'T

WANT TO ACCEPT SHE WOULDN'T !!BACK IN '97 CAME DOWN WITH OAT CELL

CANCER WAS TAKEN HOME IN LESS THAN 90 DAYS. VERY FAST GROWING CANCER

YET, " BLESSE " WITH THE TIME HAD HERE IN LIFE WITH HER. WISH I WOULD

HAVE RELIZED/ACCEPTED SHE WAS LEAVING. I WOULD HAVE DONE MORE INSTEAD

OF WORKING SO MUCH...WE NEVER KNOW THEN, IT TOO, HAS ALOT TO DO WITH

RATHER THE PERSON IS GIVING UP AND ALL, TOO! LOVE,PRAYERS & RESPECT

IN HEART & SPIRIT! A FRIEND DIANE

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  • 1 year later...

This course of treatment sounds logical at this point. Three months between

visits has been normal for me. Are the doing a blood test called an RT-PCR

for him at that time? This is a very sensitive genetics test to detect and

measure the level of the CML in his system. 400mg is a standard dose, I was

at 400 for six years but had to go to 800 when my PCR started showing

positive counts earlier this year.

Watch you dad's complete health picture, don't hesitate to go to the doctor

if he has other issues. It is easy to be too focused on the CML and miss

other important issues.

Troxel

On Tue, Nov 10, 2009 at 9:36 AM, <asynodis@...> wrote:

>

>

> Ok so here we are, i have talked to a few of you via email and now im going

> to post, my dad found out in August he has CML at the age of 84, he was told

> by his doctor that his blood looked good last week and that he does not need

> to see him for 3 months, for me this does not sound right, he was just put

> on Gleevec at the end of Sept was taken off for a week because the side

> effects were to bad, just put back on two weeks ago and is now at 400, if

> anyone has any information on medical care and cml at his age please let me

> know.

> thanks,

>

>

>

>

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If you and your dad are not comfortable, TELL THE DOCTOR!!!!  The first time he

told me no blood draws for a month, I said I wasn't comfortable with that.  We

compromised and I had blood drawn every week and saw the dr. once a month.

If your doctor has a problem with your concerns, find a new one.  Let us know

where you are and I'm sure one of us can hook you up!!!

Your dad's age shouldn't come into play.  He wants to live a long long life and

he should!!!!!

Love and Blessings,

Jo-Dee

From: <asynodis@...>

Subject: [ ] my dad

Date: Tuesday, November 10, 2009, 5:36 PM

 

Ok so here we are, i have talked to a few of you via email and now im

going to post, my dad found out in August he has CML at the age of 84, he was

told by his doctor that his blood looked good last week and that he does not

need to see him for 3 months, for me this does not sound right, he was just put

on Gleevec at the end of Sept was taken off for a week because the side effects

were to bad, just put back on two weeks ago and is now at 400, if anyone has any

information on medical care and cml at his age please let me know.

thanks,

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from what i am understanding they will not be doing that blood test for three

months, his white count went down but his red count has not gone up,  my dad's

over all health is better then most for a 84 yr old man, this is his third bout

with cancer he lost his kidney about 3 yrs ago, other then that the normal aches

and pains, and some heart issues.

>

>

> Ok so here we are, i have talked to a few of you via email and now im going

> to post, my dad found out in August he has CML at the age of 84, he was told

> by his doctor that his blood looked good last week and that he does not need

> to see him for 3 months, for me this does not sound right, he was just put

> on Gleevec at the end of Sept was taken off for a week because the side

> effects were to bad, just put back on two weeks ago and is now at 400, if

> anyone has any information on medical care and cml at his age please let me

> know.

> thanks,

>

>

> 

>

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here is where my problem is, he has to go to the VA hospital, even though he has

Scan the cost to go to the priviate dr with meds is to much for him to afford, i

am going to try and get the doctor to call me back to give me more information.

thank you for your response

From: <asynodis (DOT) com>

Subject: [ ] my dad

groups (DOT) com

Date: Tuesday, November 10, 2009, 5:36 PM

 

Ok so here we are, i have talked to a few of you via email and now im going to

post, my dad found out in August he has CML at the age of 84, he was told by his

doctor that his blood looked good last week and that he does not need to see him

for 3 months, for me this does not sound right, he was just put on Gleevec at

the end of Sept was taken off for a week because the side effects were to bad,

just put back on two weeks ago and is now at 400, if anyone has any information

on medical care and cml at his age please let me know.

thanks,

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I hope you get your info. The next time your dad goes to the VA see if you can

accompany him and make sure you are listed as one that can receive his medical

information. They are strict on protecting the Veterans privacy. If you can

work with the Dr. I think you will find that they will keep you informed so that

he will receive the best care possible. The VA is working hard to become

patient friendly. The KC VA is the front runner and is working hard to pass

this to all the other facallities. I have been talking to my brother in HA and

he finally got all of his records straightened out and he said his first visit

was awesome. He was blown away by the new attitude of being patient friendly

after a lifetime of horror stories.

H.

DXD 2/03

400mg Gleevec 3/03

Gleevec Vacation 7/08 to present

>

> From: <asynodis (DOT) com>

> Subject: [ ] my dad

> groups (DOT) com

> Date: Tuesday, November 10, 2009, 5:36 PM

>

>  

>

> Ok so here we are, i have talked to a few of you via email and now im going to

post, my dad found out in August he has CML at the age of 84, he was told by his

doctor that his blood looked good last week and that he does not need to see him

for 3 months, for me this does not sound right, he was just put on Gleevec at

the end of Sept was taken off for a week because the side effects were to bad,

just put back on two weeks ago and is now at 400, if anyone has any information

on medical care and cml at his age please let me know.

>

> thanks,

>

>

>

>

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i did get to go to one of his appt, the dr was a but abrupt but did finally

answer my question, the last two times he went he did not see this dr but a

standard md, so now im stuck waiting for 3 months, my concern is the fact that

he will not be seen for 4 months and really he has only been on gleevec 400 for

two weeks

From: dickie_64012 <dickie_64012@...>

Subject: Re: [ ] my dad

Date: Wednesday, November 11, 2009, 5:06 AM

 

I hope you get your info. The next time your dad goes to the VA see if you can

accompany him and make sure you are listed as one that can receive his medical

information. They are strict on protecting the Veterans privacy. If you can work

with the Dr. I think you will find that they will keep you informed so that he

will receive the best care possible. The VA is working hard to become patient

friendly. The KC VA is the front runner and is working hard to pass this to all

the other facallities. I have been talking to my brother in HA and he finally

got all of his records straightened out and he said his first visit was awesome.

He was blown away by the new attitude of being patient friendly after a lifetime

of horror stories.

H.

DXD 2/03

400mg Gleevec 3/03

Gleevec Vacation 7/08 to present

>

> From: <asynodis (DOT) com>

> Subject: [ ] my dad

> groups (DOT) com

> Date: Tuesday, November 10, 2009, 5:36 PM

>

>  

>

> Ok so here we are, i have talked to a few of you via email and now im going to

post, my dad found out in August he has CML at the age of 84, he was told by his

doctor that his blood looked good last week and that he does not need to see him

for 3 months, for me this does not sound right, he was just put on Gleevec at

the end of Sept was taken off for a week because the side effects were to bad,

just put back on two weeks ago and is now at 400, if anyone has any information

on medical care and cml at his age please let me know.

>

> thanks,

>

>

>

>

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I'd be uncomfortable with a three-month period between doctor visits. I

would want him to be seen at least once a month, at least for my peace of

mind. When I was first diagnosed in 2005, I was seen once a week for several

weeks, then once a month. Now, nearly five years later, it's two months.

On Tue, Nov 10, 2009 at 9:40 PM, Empero <asynodis@...> wrote:

>

>

> i did get to go to one of his appt, the dr was a but abrupt but did finally

> answer my question, the last two times he went he did not see this dr but a

> standard md, so now im stuck waiting for 3 months, my concern is the fact

> that he will not be seen for 4 months and really he has only been on gleevec

> 400 for two weeks

>

>

>

> From: dickie_64012 <dickie_64012@... <dickie_64012%40>>

>

> Subject: Re: [ ] my dad

> <%40>

> Date: Wednesday, November 11, 2009, 5:06 AM

>

>

>

>

> I hope you get your info. The next time your dad goes to the VA see if you

> can accompany him and make sure you are listed as one that can receive his

> medical information. They are strict on protecting the Veterans privacy. If

> you can work with the Dr. I think you will find that they will keep you

> informed so that he will receive the best care possible. The VA is working

> hard to become patient friendly. The KC VA is the front runner and is

> working hard to pass this to all the other facallities. I have been talking

> to my brother in HA and he finally got all of his records straightened out

> and he said his first visit was awesome. He was blown away by the new

> attitude of being patient friendly after a lifetime of horror stories.

>

> H.

> DXD 2/03

> 400mg Gleevec 3/03

> Gleevec Vacation 7/08 to present

>

>

> >

> > From: <asynodis (DOT) com>

> > Subject: [ ] my dad

> > groups (DOT) com

> > Date: Tuesday, November 10, 2009, 5:36 PM

> >

> > Â

> >

> > Ok so here we are, i have talked to a few of you via email and now im

> going to post, my dad found out in August he has CML at the age of 84, he

> was told by his doctor that his blood looked good last week and that he does

> not need to see him for 3 months, for me this does not sound right, he was

> just put on Gleevec at the end of Sept was taken off for a week because the

> side effects were to bad, just put back on two weeks ago and is now at 400,

> if anyone has any information on medical care and cml at his age please let

> me know.

> >

> > thanks,

> >

> >

> >

> >

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Oh i am, the problem is that his girlfriend went with him and got all excited

thinking the cancer was under control, i told her that with out the proper

testing there was know way to determine that, and with the blood test they were

doing it would not show it, as of now they have not scheduled another bone

marrow test, all though his white count is down his red count has not improved,

which leads me to believe that he should be watched closely.

>

> From: dickie_64012 <dickie_64012@... <dickie_64012%40>>

>

> Subject: Re: [ ] my dad

> <%40>

> Date: Wednesday, November 11, 2009, 5:06 AM

>

>

>

>

> I hope you get your info. The next time your dad goes to the VA see if you

> can accompany him and make sure you are listed as one that can receive his

> medical information. They are strict on protecting the Veterans privacy. If

> you can work with the Dr. I think you will find that they will keep you

> informed so that he will receive the best care possible. The VA is working

> hard to become patient friendly. The KC VA is the front runner and is

> working hard to pass this to all the other facallities. I have been talking

> to my brother in HA and he finally got all of his records straightened out

> and he said his first visit was awesome. He was blown away by the new

> attitude of being patient friendly after a lifetime of horror stories.

>

> H.

> DXD 2/03

> 400mg Gleevec 3/03

> Gleevec Vacation 7/08 to present

>

>

> >

> > From: <asynodis (DOT) com>

> > Subject: [ ] my dad

> > groups (DOT) com

> > Date: Tuesday, November 10, 2009, 5:36 PM

> >

> > Â

> >

> > Ok so here we are, i have talked to a few of you via email and now im

> going to post, my dad found out in August he has CML at the age of 84, he

> was told by his doctor that his blood looked good last week and that he does

> not need to see him for 3 months, for me this does not sound right, he was

> just put on Gleevec at the end of Sept was taken off for a week because the

> side effects were to bad, just put back on two weeks ago and is now at 400,

> if anyone has any information on medical care and cml at his age please let

> me know.

> >

> > thanks,

> >

> >

> >

> >

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>

> i did get to go to one of his appt, the dr was a but abrupt but did finally

answer my question, the last two times he went he did not see this dr but a

standard md, so now im stuck waiting for 3 months, my concern is the fact that

he will not be seen for 4 months and really he has only been on gleevec 400 for

two weeks

________________________

Hi ,

If you Dad has only been on Gleevec for 2 weeks.......YES, he should not be

waiting 4 months to see the doctor again. He should have a simple CBC maybe

every week or two until his blood counts have stabilized (to know that they are

not dropping too low).

Usually the blood test can just be done locally at a lab and the results faxed

to the doctor....also the doctor should give you and your Dad permission to have

a copy of the results each time the test is done (it is a quick test, or the

results could be mailed to you).

They also should do a blood chemistry to make sure the drug is not affecting his

liver and causing the liver enzymes to go up. This should be about every 4-6

weeks in the early stages also.

These are the standard blood tests that the CML specialists do and they monitor

regularly in the beginning. I hope you will have good luck in talking to someone

about getting more frequent blood tests. If your Dad has a local GP, that doctor

can order these blood tests and then fax them to the oncologist at the VA.

C.

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I'm with you!

On Wed, Nov 11, 2009 at 7:18 AM, Empero <asynodis@...> wrote:

>

>

> Oh i am, the problem is that his girlfriend went with him and got all

> excited thinking the cancer was under control, i told her that with out the

> proper testing there was know way to determine that, and with the blood test

> they were doing it would not show it, as of now they have not scheduled

> another bone marrow test, all though his white count is down his red count

> has not improved, which leads me to believe that he should be watched

> closely.

>

>

> >

> > From: dickie_64012 <dickie_64012@...

<dickie_64012%40><dickie_64012%

> 40>>

>

> >

> > Subject: Re: [ ] my dad

> > <%40> <%

> 40>

>

> > Date: Wednesday, November 11, 2009, 5:06 AM

> >

> >

> >

> >

> > I hope you get your info. The next time your dad goes to the VA see if

> you

> > can accompany him and make sure you are listed as one that can receive

> his

> > medical information. They are strict on protecting the Veterans privacy.

> If

> > you can work with the Dr. I think you will find that they will keep you

> > informed so that he will receive the best care possible. The VA is

> working

> > hard to become patient friendly. The KC VA is the front runner and is

> > working hard to pass this to all the other facallities. I have been

> talking

> > to my brother in HA and he finally got all of his records straightened

> out

> > and he said his first visit was awesome. He was blown away by the new

> > attitude of being patient friendly after a lifetime of horror stories.

> >

> > H.

> > DXD 2/03

> > 400mg Gleevec 3/03

> > Gleevec Vacation 7/08 to present

> >

> >

> > >

> > > From: <asynodis (DOT) com>

> > > Subject: [ ] my dad

> > > groups (DOT) com

> > > Date: Tuesday, November 10, 2009, 5:36 PM

> > >

> > > Â

> > >

> > > Ok so here we are, i have talked to a few of you via email and now im

> > going to post, my dad found out in August he has CML at the age of 84, he

> > was told by his doctor that his blood looked good last week and that he

> does

> > not need to see him for 3 months, for me this does not sound right, he

> was

> > just put on Gleevec at the end of Sept was taken off for a week because

> the

> > side effects were to bad, just put back on two weeks ago and is now at

> 400,

> > if anyone has any information on medical care and cml at his age please

> let

> > me know.

> > >

> > > thanks,

> > >

> > >

> > >

> > >

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