Finding IBC'ers who have been NED for 10 years!

It would sure be nice to hear from those oldies-those that
had IBC and are
10 years or fifteen years out.  We relatively nubies sure
need that
inspiration.  I don't know about you all but the farther
out I hear about
someone being, the better I feel about my own survival.
 I have a question for Dr. Virginia.  Do you think Family
Drs and
Oncologists do not recommend clinical trials because they do
not want to
loose the money that will be coming their way in the
treatment process?  I
hate to think that is true-but as I said before- my surgeon
who I love and
my local Oncologist neither encouraged nor did they
discourage me from
participating in a clinical trial. 
 Speaking of which-I go down to NCI in Bethesda tomorrow for
an MRI and a
pulmonary function test-testing my lung capacity-I may have
sarcoidosis-an
after effect of having my immune system compromised when I
had my analogous
stem cell transplant.  Anyhow since I've widened my circle
of friends I will
ask you all to pray for me.  I know it works-that's how I
got this
far...............................Bonnie-Frederick, Md

-----Original Message-----
From: ibc-bouncesibcsupport.org [mailto:ibc-bouncesibcsupport.org] On
Behalf Of Susan Bumgarner
Sent: Sunday, August 20, 2006 7:19 PM
To: 'patti bradfield'; 'Patrick and Bonnie'
Cc: Rosiethomas1138aol.com; ibcibcsupport.org
Subject: RE: [ibc] Re: ibc Digest Vol 32 Issue 30

Yeah, sometimes I think we need to march on the AMA for them
to know how
many of us there are. I'll say to my doctor, "Some
women I have talked to
are taking Tykerb", or whatever, and he's like 'Oh
yeah? Who are these
women?" He isn't that rude, but he gives me the
impression that he doesn't
really think we have a network.

Susan

-----Original Message-----
From: ibc-bouncesibcsupport.org [mailto:ibc-bouncesibcsupport.org] On
Behalf Of patti bradfield
Sent: Sunday, August 20, 2006 11:36 AM
To: Patrick and Bonnie
Cc: ibcibcsupport.org; Rosiethomas1138aol.com
Subject: Re: [ibc] Re: ibc Digest Vol 32 Issue 30

Wonderfully said Bonnie,

I would love to know how many there are that DON"T
have a computer  
who are fighting or who have fought IBC we haven't heard
about.  I  
know for a fact there are 3 women in my area that are 8,9
and 10  
years out that don't use the internet.  And I still have a
problem  
with the word rare, (rare maybe to find a doctor who knows
about IBC)  
but not with the actual numbers.

As an aside, through the centuries women have broken through
 
politics, work place problems etc, and gone on
"together" in force to  
make changes.  There is positive changes when we all stand
up to be  
counted and take life on the chin and move forward.

Thank you for you well put sentiment.

Cheers back atcha

Patti in Redmond, WA



On Aug 19, 2006, at 7:19 PM, Patrick and Bonnie wrote:

I've been listening to stories for 3 months now, since I
joined the  
group-I
just can't seem to find a common link-there just doesn't
seem to be  
one.  I
do know in my case that I always had a pain in my left
breast and it was
always there-all my life.  I think we all have cancer cells
running  
around
in our bodies-caused by heredity and or environment-and
certain things
trigger them.  In my case I think it was mental stress-over
something
utterly stupid-but at the time was important to me.  We have
to stop  
beating
ourselves up over what we did wrong and 'play the hand that
was  
dealt' us.
For one thing when possible we should get into clinical
trials so  
records
will be around on that works and what doesn't.  I'm still
looking for  
women
in the Washington DC, Virginia, Maryland and Pennsylvania
area who  
have had
IBC.  I was in a clinical trial at the National Cancer
Institute in
Bethesda.  In the last 5 years 18 women have gone through my
same  
protocol.
I was 03 to 04.  One followed me.  That is incredibly few
women.  When I
communicate with you all it seems like there are a lot of
us.  I can't
believe how incredibly stupid some of the Drs. have been in
some  
cases. They
have been watching too many House episodes.  Cheers, Bonnie-

Frederick- Md

-----Original Message-----
From: ibc-bouncesibcsupport.org [mailto:ibc-bouncesibcsupport.org] On
Behalf Of Rosiethomas1138aol.com
Sent: Saturday, August 19, 2006 4:03 PM
To: ibcibcsupport.org
Subject: [ibc] Re: ibc Digest Vol 32 Issue 30

Dear All

Sherry (a newbie) mentioned in her posting that she
"wished there was a
place that found all ibc people through doctors offices and
asked every
question
imaginable to find our commonalities."  Somehow I
don't think that's  
going
to
happen, so why can't we do something like that ourselves? 
I think I   
will
start by stating what was going on in my life before ibc and
hope this
helps.
Perhaps everyone can join in, or perhaps we can devise our
own
questionnaire.
  I don't mind collating questions.....

I was 55, a vegetarian, with only one child.  Married.  Not 
working.  
Living

near a busy road. overweight. used deodorant. Suffered from 
 
depression and
anxiety for most of my life.  1 year before ibc showed up 
visited
Psychologist.
Have osteoarthritis.  Disturbed sleep most nights.  Very
sensitive
personality. Very rarely lose my temper. Tend to bottle
things  up. I  
was
insecure. Have
hiatus hernia.  An intolerance to dairy products.  Not very
close family
ties.  Don't like being out in the sun. Didn't take a  lot
of  
medication.
Lacked
confidence in my decisions. Tended tobe pushed around.  Like
to be in
control.
Gets upset easily over things.
Takes piles of vitamins and supplements. Lack of exercise. 
A  
worrier.  A
lot
of breast cancer in the family. Experienced lots of family
deaths as a
child. Strong belief in God.

The reason I am suggesting this is that I have just read a
book by  
Carl O
Simonton and it appears there is a "cancer type"
of person and he  
sets out
how
people who have come from certain backgrounds are more
likely to develop
cancer.

Hope that is useful.   I really do think that it would be
helpful  if  
people

put down stuff about themselves or perhaps we could think of
a bunch  of
questions?

I have been NED since 2003 when my tumour disappeared after
chemo.

Remembering you all in my prayers.

Love Sandra (UK)



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patti bradfield
Redmond, WA
www.phbservices.com




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Hi, Bonnie -

15 years, 5 months, 5 days, 10 hours, 5 minutes as I type
this.

On the subject of non-participation in clinical trials, one
thing I've 
learned is that I need not ascribe things to malevolence
(worying about 
the money) when lack of time or sheer ignorance will do! 


Seriously, I think that many doctors in community oncology
practices 
simply do not have time to keep up every single day with the

developments going on in research.  That's one of the
reasons why I 
think we need to become serious advocates for ourselves,
learn how to do 
the research to help them understand what the latest
information is, 
etc.  That said, it is equally important that we get them to
understand 
that it's their responsibility to evaluate the information
we bring them 
and to try always to be willing to look further if they have
a seriously 
reasonable reason not to do something. 

As an example, the effect on left ventricular ejection
fraction (LVEF), 
which is the heart function mentioned in somebody's email
this weekend, 
by several chemos and Herceptin is pretty well understood. 
What a lot 
of community oncologists don't understand that, for
patients whose 
tumors respond to the chemos and/or Herceptin, when the
heart function 
drops below, usually, 50 percent, substituting a different
chemo or 
laying off the Herceptin for a while allows the heart to
recover so that 
the patient can get more of the chemo(s) or Herceptin down
the road.  
One recent study found that only something like 3-4 percent
of patients 
did not recover sufficiently to be able to get more of the
particular 
treatment.  But, I'd wonder whether community oncologists
have heard 
this particular information yet.

HTH.

virginia
<>\ / Virginia R. Hetrick, here in sunny California
0 Voicemail: 310.471.1766 Email: drjuicegte.net
Oo "There is always hope."
My fave: http:
//www.washington.edu/cambots/camera1_l.gif
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 Hi:
 
I post rather infrequently, but read all the emails.  I had
to respond to your request so I could give all of you hope
and encouragement.  I haven't quite made the 10 year mark
YET, but I was DX Oct. 1997 and finished treatment 11/98.  I
did have HDC/STR and have been NED since '98 (and pray each
day that I stay that way).
 
 
Carol Maines
New Jersey
 
 
-----Original Message-----
From: volovaradelphia.net
To: susanwbcharter.net; p.thewriterverizon.net
Cc: ibcibcsupport.org; Rosiethomas1138aol.com
Sent: Sun, 20 Aug 2006 11:40 PM
Subject: RE: [ibc] Re: Finding IBC'ers who have been NED
for 10 years!


It would sure be nice to hear from those oldies-those that
had IBC and are
10 years or fifteen years out.  We relatively nubies sure
need that
inspiration.  I don't know about you all but the farther
out I hear about
someone being, the better I feel about my own survival.
 I have a question for Dr. Virginia.  Do you think Family
Drs and
Oncologists do not recommend clinical trials because they do
not want to
loose the money that will be coming their way in the
treatment process?  I
hate to think that is true-but as I said before- my surgeon
who I love and
my local Oncologist neither encouraged nor did they
discourage me from
participating in a clinical trial. 
 Speaking of which-I go down to NCI in Bethesda tomorrow for
an MRI and a
pulmonary function test-testing my lung capacity-I may have
sarcoidosis-an
after effect of having my immune system compromised when I
had my analogous
stem cell transplant.  Anyhow since I've widened my circle
of friends I will
ask you all to pray for me.  I know it works-that's how I
got this
far...............................Bonnie-Frederick, Md

-----Original Message-----
From: ibc-bouncesibcsupport.org [mailto:ibc-bouncesibcsupport.org] On
Behalf Of Susan Bumgarner
Sent: Sunday, August 20, 2006 7:19 PM
To: 'patti bradfield'; 'Patrick and Bonnie'
Cc: Rosiethomas1138aol.com; ibcibcsupport.org
Subject: RE: [ibc] Re: ibc Digest Vol 32 Issue 30

Yeah, sometimes I think we need to march on the AMA for them
to know how
many of us there are. I'll say to my doctor, "Some
women I have talked to
are taking Tykerb", or whatever, and he's like 'Oh
yeah? Who are these
women?" He isn't that rude, but he gives me the
impression that he doesn't
really think we have a network.

Susan

-----Original Message-----
From: ibc-bouncesibcsupport.org [mailto:ibc-bouncesibcsupport.org] On
Behalf Of patti bradfield
Sent: Sunday, August 20, 2006 11:36 AM
To: Patrick and Bonnie
Cc: ibcibcsupport.org; Rosiethomas1138aol.com
Subject: Re: [ibc] Re: ibc Digest Vol 32 Issue 30

Wonderfully said Bonnie,

I would love to know how many there are that DON"T
have a computer  
who are fighting or who have fought IBC we haven't heard
about.  I  
know for a fact there are 3 women in my area that are 8,9
and 10  
years out that don't use the internet.  And I still have a
problem  
with the word rare, (rare maybe to find a doctor who knows
about IBC)  
but not with the actual numbers.

As an aside, through the centuries women have broken through
 
politics, work place problems etc, and gone on
"together" in force to  
make changes.  There is positive changes when we all stand
up to be  
counted and take life on the chin and move forward.

Thank you for you well put sentiment.

Cheers back atcha

Patti in Redmond, WA



On Aug 19, 2006, at 7:19 PM, Patrick and Bonnie wrote:

I've been listening to stories for 3 months now, since I
joined the  
group-I
just can't seem to find a common link-there just doesn't
seem to be  
one.  I
do know in my case that I always had a pain in my left
breast and it was
always there-all my life.  I think we all have cancer cells
running  
around
in our bodies-caused by heredity and or environment-and
certain things
trigger them.  In my case I think it was mental stress-over
something
utterly stupid-but at the time was important to me.  We have
to stop  
beating
ourselves up over what we did wrong and 'play the hand that
was  
dealt' us.
For one thing when possible we should get into clinical
trials so  
records
will be around on that works and what doesn't.  I'm still
looking for  
women
in the Washington DC, Virginia, Maryland and Pennsylvania
area who  
have had
IBC.  I was in a clinical trial at the National Cancer
Institute in
Bethesda.  In the last 5 years 18 women have gone through my
same  
protocol.
I was 03 to 04.  One followed me.  That is incredibly few
women.  When I
communicate with you all it seems like there are a lot of
us.  I can't
believe how incredibly stupid some of the Drs. have been in
some  
cases. They
have been watching too many House episodes.  Cheers, Bonnie-

Frederick- Md

-----Original Message-----
From: ibc-bouncesibcsupport.org [mailto:ibc-bouncesibcsupport.org] On
Behalf Of Rosiethomas1138aol.com
Sent: Saturday, August 19, 2006 4:03 PM
To: ibcibcsupport.org
Subject: [ibc] Re: ibc Digest Vol 32 Issue 30

Dear All

Sherry (a newbie) mentioned in her posting that she
"wished there was a
place that found all ibc people through doctors offices and
asked every
question
imaginable to find our commonalities."  Somehow I
don't think that's  
going
to
happen, so why can't we do something like that ourselves? 
I think I   
will
start by stating what was going on in my life before ibc and
hope this
helps.
Perhaps everyone can join in, or perhaps we can devise our
own
questionnaire.
  I don't mind collating questions.....

I was 55, a vegetarian, with only one child.  Married.  Not 
working.  
Living

near a busy road. overweight. used deodorant. Suffered from 
 
depression and
anxiety for most of my life.  1 year before ibc showed up 
visited
Psychologist.
Have osteoarthritis.  Disturbed sleep most nights.  Very
sensitive
personality. Very rarely lose my temper. Tend to bottle
things  up. I  
was
insecure. Have
hiatus hernia.  An intolerance to dairy products.  Not very
close family
ties.  Don't like being out in the sun. Didn't take a  lot
of  
medication.
Lacked
confidence in my decisions. Tended tobe pushed around.  Like
to be in
control.
Gets upset easily over things.
Takes piles of vitamins and supplements. Lack of exercise. 
A  
worrier.  A
lot
of breast cancer in the family. Experienced lots of family
deaths as a
child. Strong belief in God.

The reason I am suggesting this is that I have just read a
book by  
Carl O
Simonton and it appears there is a "cancer type"
of person and he  
sets out
how
people who have come from certain backgrounds are more
likely to develop
cancer.

Hope that is useful.   I really do think that it would be
helpful  if  
people

put down stuff about themselves or perhaps we could think of
a bunch  of
questions?

I have been NED since 2003 when my tumour disappeared after
chemo.

Remembering you all in my prayers.

Love Sandra (UK)



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patti bradfield
Redmond, WA
www.phbservices.com




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