CONGRATULATIONS AMY!!!
Cindy, FL
-----Original Message-----
From: ibc-bounces ibcsupport.org [mailto:ibc-bouncesibcsupport.org] On
Behalf Of ibc-requestibcsupport.org
Sent: Tuesday, January 02, 2007 9:03 PM
To: ibcibcsupport.org
Subject: ibc Digest, Vol 37, Issue 4
Send ibc mailing list submissions to
ibcibcsupport.org
To subscribe or unsubscribe via the World Wide Web, visit
http:/
/www.ibcsupport.org/mailman/listinfo/ibc
or, via email, send a message with subject or body 'help' to
ibc-requestibcsupport.org
You can reach the person managing the list at
ibc-owneribcsupport.org
When replying, please edit your Subject line so it is more
specific
than "Re: Contents of ibc digest..."
Today's Topics:
1. Re: Skin mets and power ports (khughett3940aol.com)
2. RE:IBC and diet (Ruth Coates)
3. RE: power ports (Ruth Coates)
4. 5 year anniversary today. (Amy Pitman)
5. Breast cancer genes (khughett3940aol.com)
6. Re: 5 year anniversary today. (Wendy Nick)
7. Re: 5 year anniversary today (ragu cru)
8. Re: Tykerb/Herceptiln trial - Tykerb/Xeloda (saskia
schoofs)
9. Inflammatory breast cancer: Treatment - MayoClinic.com
(ragu cru)
10. Re: Inflammatory breast cancer: Treatment -
MayoClinic.com (dly)
11. RE: 5 year anniversary today. (Catherine Pearce)
12. Re: tests, scans, markers etc (Susan Guerrieri)
13. RE: 5 year anniversary today. (Gina Sweeney)
14. Re: 5 year anniversary today. (rtsmith81optonline.net)
15. Fwd: [ibc] 100%mortality rate without chemotx
(SusanRNLACaol.com)
16. RE: Merry Christmas Everyone! (Kathy Patton)
17. Re: Inflammatory breast cancer: Treatment -
MayoClinic.com
(Phyllis Johnson)
18. Re: 5 year anniversary today. (JShelly)
19. Re: Tykerb/Herceptiln trial - Tykerb/Xeloda (JShelly)
20. Re: Inflammatory breast cancer: Treatment -
MayoClinic.com
(JShelly)
21. Re: Inflammatory breast cancer: Treatment -
MayoClinic.com
(JShelly)
22. RE: risk of IBC/BC (Fiona Thomson)
23. RE: IBC & diet (Fiona Thomson)
24. Re: 5 year anniversary today. (Carolyn Gallaghan)
25. RE: 5 year anniversary today. (Fiona Thomson)
26. Re: risk of IBC/BC - genetic testing (Judi Beil)
------------------------------------------------------------
----------
Message: 1
Date: Tue, 02 Jan 2007 12:03:46 -0500
From: khughett3940aol.com
Subject: Re: [ibc] Skin mets and power ports
To: gurpreetbirgiyahoo.com, scbeezley54austin.rr.com
Cc: ibcibcsupport.org
Message-ID: <8C8FCA719B43A1C-C84-5252mblk-r35.sysops.aol.com>
Content-Type: text/plain
Dear Rosy,
It's supposed to be more easily accessible...my friend says
it has three
little balls that guide the needle in so you can't mess it
up and it's also
supposed to be able to be used for CT scans with contrast
when they shoot
the dye, so as not to burst the port line. I am getting my
3rd port on
January 15th and will be asking about the differences. Right
now I get
chemo, Herceptin and scan contrast done in the top of my
feet. The CT people
are very good at setting the machine to inject the dye
slower or they
manually inject so as not to cause a problem with my
veins....
Happy New Year to you and your mom,
Krysti - Indy
-----Original Message-----
From: gurpreetbirgiyahoo.com
To: khughett3940aol.com; scbeezley54austin.rr.com
Cc: ibcibcsupport.org
Sent: Tue, 2 Jan 2007 11:08 AM
Subject: Re: [ibc] Skin mets and power ports
I've heard of the mediport, mom has one, but what is a power
port??
Rosy
khughett3940aol.com wrote:
Dear Shirley,
I have an IBC'er friend Jess that just got one of the
"power ports" and she
went to have a scan and had to wait hours for a nurse to
drive somewhere and
go get one of the special needles that works with it for CT
injection!
I don't have skin mets, but my PT works with many bc
Survivors with them.
She always recommends taking a piece of Saran Wrap and
laying it over your
chest and then using a Sharpie and marking the size of the
mets. Then you
can save it and take it out when you need to check on
whether they have
changed and place it back over the chest and see if anything
has gotten
larger or smaller. Hopefully smaller!
I pray the trial is working for you! Hugs, Prayers &
Happy New Year!
Krysti - Indy
____________________________________________________________
____________
Check out the new AOL. Most comprehensive set of free safety
and security
tools, free access to millions of high-quality videos from
across the web,
free AOL Mail and more.
[list software deleted text/html attachment]
--
** List address: ibcibcsupport.org
** Information - subscribe, unsubscribe, archives, etc.:
** http://www.ibcsupport
.org/list/
** Donations: http://www.i
bcsupport.org/donations.html
__________________________________________________
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection
around
http://mail.yahoo.com
____________________________________________________________
____________
Check out the new AOL. Most comprehensive set of free
safety and security
tools, free access to millions of high-quality videos from
across the web,
free AOL Mail and more.
[list software deleted text/html attachment]
------------------------------
Message: 2
Date: Tue, 02 Jan 2007 12:08:03 -0500
From: Ruth Coates <racoatesbtc-bci.com>
Subject: [ibc] RE:IBC and diet
To: ibcibcsupport.org
Message-ID: <459A9173.40807btc-bci.com>
Content-Type: text/plain
Maggie,
I think your Dr and friends are right. Eat what you can
tolerate and
taste and forget about what might be "bad" for you
re: IBC. Everything
you eat is used by your body, which the IBC is part of.
Your body needs
the nutrients to fight the effects of and repair from, the
chemo/radiation or whatever. From what I have read, the
cancer cells
can't organize enough to use nutrients efficiently when
bombarded by
what we're hitting them with. Everything in moderation, of
course.
What part of michigan are you from? I'm from Paw Paw, in SW
MI.
Ruth
[list software deleted text/html attachment]
------------------------------
Message: 3
Date: Tue, 02 Jan 2007 12:16:44 -0500
From: Ruth Coates <racoatesbtc-bci.com>
Subject: [ibc] RE: power ports
To: ibcibcsupport.org
Message-ID: <459A937C.50200btc-bci.com>
Content-Type: text/plain
Hi there,
Power ports are implanted (surgically) ports that have a
stiffer
catheter attached to them that goes in your vein, allowing
power-injection to be done. Regular implanted ports have a
very
flexible catheter attached to them that can't take the high
pressure of
power-injection (sometimes greater than 300 psi) but are
perfectly fine
for regular infusions like chemo and other medications via
an IV pump
(in my hospital anyway). Power ports are also fine for
regular
infusions (you don't need two different ports). Power
-ports are
relatively new, although I heard of them just after I had my
double
lumen port placed in Aug 06 (of course!).
Ruth
[list software deleted text/html attachment]
------------------------------
Message: 4
Date: Tue, 2 Jan 2007 09:19:11 -0800 (PST)
From: Amy Pitman <pitmanrealtyyahoo.com>
Subject: [ibc] 5 year anniversary today.
To: IBC <ibcibcsupport.org>
Message-ID: <501603.24454.qmweb51902.mail.yahoo.com>
Content-Type: text/plain
Hi, Today is my 5 year anniversary from IBC!!!! I am 42
years old and also
have the BRCA2 gene....
I am truly blessed!
Have a great new year.
Amy Pitman
817-247-6692 cell
pitmanrealtyyahoo.com
[list software deleted text/html attachment]
------------------------------
Message: 5
Date: Tue, 02 Jan 2007 12:21:36 -0500
From: khughett3940aol.com
Subject: [ibc] Breast cancer genes
To: drjuicegte.net
Cc: ibcibcsupport.org
Message-ID: <8C8FCA9978CEE78-C84-53B8mblk-r35.sysops.aol.com>
Content-Type: text/plain
Recently there have been some new breast cancer genes
identified, but no
test for them as yet....CHEK2, ATM and BRIP1....information
publshed in
Nature Genetics and here's a CBS article about it:
http://www.cbsnews.com/stories/2006/10/0
9/health/webmd/main2074126.shtml
" The newly discovered mutation, BRIP1, carries about
the same risk as the
already-known CHEK2 and ATM gene mutations. Like the scarier
BRCA mutations,
all of these genes are involved in DNA repair.
Most likely, BRIP1, CHEK2, and ATM mutations only cause
cancer in
combination with each other or with environmental factors,
the researchers
report.
Stay tuned: All of the breast cancer gene mutations found so
far explain
only 25% of inherited breast cancer risk. That means Rahman
and other
geneticists still have a lot of work to do before they can
predict who will
inherit breast cancer and who won't. "
Happy New Year!
Krysti - Indy
____________________________________________________________
____________
Check out the new AOL. Most comprehensive set of free
safety and security
tools, free access to millions of high-quality videos from
across the web,
free AOL Mail and more.
[list software deleted text/html attachment]
------------------------------
Message: 6
Date: Tue, 2 Jan 2007 10:03:19 -0800 (PST)
From: Wendy Nick <alpinewendyyahoo.com>
Subject: Re: [ibc] 5 year anniversary today.
To: Amy Pitman <pitmanrealtyyahoo.com>, IBC
<ibcibcsupport.org>
Message-ID: <669546.86728.qmweb60425.mail.yahoo.com>
Content-Type: text/plain
Hi Amy:
What a great announcement, you give us hope, thank you!
~Wendy in PA
Amy Pitman <pitmanrealtyyahoo.com> wrote: Hi,
Today is my 5 year
anniversary from IBC!!!! I am 42 years old and also have the
BRCA2 gene....
I am truly blessed!
Have a great new year.
Amy Pitman
817-247-6692 cell
pitmanrealtyyahoo.com
[list software deleted text/html attachment]
--
** List address: ibcibcsupport.org
** Information - subscribe, unsubscribe, archives, etc.:
** http://www.ibcsupport
.org/list/
** Donations: http://www.i
bcsupport.org/donations.html
__________________________________________________
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection
around
http://mail.yahoo.com
[list software deleted text/html attachment]
------------------------------
Message: 7
Date: Tue, 2 Jan 2007 10:17:57 -0800
From: "ragu cru" <gonagetucomcast.net>
Subject: Re: [ibc] 5 year anniversary today
To: "ibc" <ibcibcsupport.org>
Message-ID: <006601c72e9a$548a75b0$6401a8c0ragu4kq02sxv0k>
Content-Type: text/plain
Congrats!!!! 5 years WOW!!!!!
Enjoy every moment of your success!!!! We're all
celebrating along with
you!
HUGS!
Deby Clackamas/OR
[list software deleted text/html attachment]
------------------------------
Message: 8
Date: Tue, 02 Jan 2007 19:24:07 +0100
From: saskia schoofs <saskiakasper.be>
Subject: Re: [ibc] Tykerb/Herceptiln trial - Tykerb/Xeloda
To: Shirley & Clare Beezley <scbeezley54austin.rr.com>
Cc: ibcibcsupport.org
Message-ID: <459AA347.4030005kasper.be>
Content-Type: text/plain; charset=ISO-8859-1; format=flowed
Hi Shirley,
I am on Xeloda/Tykerb since the beginning of December. Only,
I am rather
confused, as half a year ago my onc told me that Xeloda
didn't work for
me at all anymore (after about 3 years on the stuff) (I was
on
Xeloda/Herceptin) and that it had no use to take it anymore,
that I just
had to wait for the Tykerb to become available. So I didn't
take
anything for some months. And now I have to take Xeloda with
Tykerb.
I don't understand. Does anyone know if Xeloda could be
active again
because it is combined with another drug? My onc just says I
have to
take it because it is part of the trial and otherwise I
can't be in it.
But as I am troubled by it (hand/foot syndrome), the idea
that I take it
with all its disadvantages (for me, at this moment! It has
worked really
well for more than two years and it saved me, together with
Herceptin)
and no advantage at all is not motivating and I even think
of not taking
my Xeloda anymore and just not tell my onc. Which, I think,
is one step
too far in my tendency (after almost 7 years of taking
everything
without criticism  ) to think
I am a doctor myself
Happy New Year to all!
Saskia in Belgium
dx 3/2000
------------------------------
Message: 9
Date: Tue, 2 Jan 2007 10:30:08 -0800
From: "ragu cru" <gonagetucomcast.net>
Subject: [ibc] Inflammatory breast cancer: Treatment -
MayoClinic.com
To: "ibc" <ibcibcsupport.org>
Message-ID: <000501c72e9c$0804b2d0$6401a8c0ragu4kq02sxv0k>
Content-Type: text/plain
I was just reading up on IBC on the Mayo clinic website and
found some
interesting static's. Someone was asking about the surgery
first survival
rate. It states that "historically" the mortality
rates of surgery first
were 100%. check it out.
Deby/Clackamas, OR
http://www.mayoclinic.com/health/inf
lammatory-breast-cancer/DS00632/DSECTION
=6
[list software deleted text/html attachment]
------------------------------
Message: 10
Date: Tue, 2 Jan 2007 18:51:52 +0000
From: dly <dydresympatico.ca>
Subject: Re: [ibc] Inflammatory breast cancer: Treatment -
MayoClinic.com
To: "ragu cru" <gonagetucomcast.net>
Cc: ibc <ibcibcsupport.org>
Message-ID: <61DAB872-11B3-4303-BF59-69562F50834Bsympatico.ca>
Content-Type: text/plain
After reading the Mayo Clinic entry I just had to provide
the
following feedback to their site!
> Your website has this statement:
> Historically, inflammatory breast cancer was treated by
surgery and
> was associated with a 100 percent mortality rate.
> Please correct this to reflect the timeframe referred
to and also
> express mortality in number of years post surgery when
100% would
> be expected to die. We all die sometime!
dly
dydresympatico.ca
On 2-Jan-07, at 6:30 PM, ragu cru wrote:
> I was just reading up on IBC on the Mayo clinic website
and found
> some interesting static's. Someone was asking about
the surgery
> first survival rate. It states that
"historically" the mortality
> rates of surgery first were 100%. check it out.
>
> Deby/Clackamas, OR
>
> http://www.mayoclinic.com/health/inflammator
y-breast-cancer/DS00632/
> DSECTION=6
> [list software deleted text/html attachment]
>
> --
> ** List address: ibcibcsupport.org
> ** Information - subscribe, unsubscribe, archives,
etc.:
> ** http://www.ibcsupport
.org/list/
> ** Donations: http://www.i
bcsupport.org/donations.html
[list software deleted text/html attachment]
------------------------------
Message: 11
Date: Tue, 02 Jan 2007 19:02:19 +0000
From: "Catherine Pearce" <cathpearce58hotmail.com>
Subject: RE: [ibc] 5 year anniversary today.
To: pitmanrealtyyahoo.com, ibcibcsupport.org
Message-ID: <BAY135-F30BA0000BA1A87E356F2A6DCBA0phx.gbl>
Content-Type: text/plain; format=flowed
You certainly are! Here's to the next 5!
Love
Cath, bond, Uk Sister to Liz who has IBC
>From: Amy Pitman <pitmanrealtyyahoo.com>
>To: IBC <ibcibcsupport.org>
>Subject: [ibc] 5 year anniversary today.
>Date: Tue, 2 Jan 2007 09:19:11 -0800 (PST)
>
>Hi, Today is my 5 year anniversary from IBC!!!! I am 42
years old and also
>have the BRCA2 gene....
>
> I am truly blessed!
>
> Have a great new year.
>
>
> Amy Pitman
>817-247-6692 cell
>pitmanrealtyyahoo.com
>
>
>[list software deleted text/html attachment]
>
>--
>** List address: ibcibcsupport.org
>** Information - subscribe, unsubscribe, archives, etc.:
>** http://www.ibcsupport
.org/list/
>** Donations: http://www.i
bcsupport.org/donations.html
____________________________________________________________
_____
Be the first to hear what's new at MSN - sign up to our free
newsletters!
http://www.msn.co.uk
/newsletters
------------------------------
Message: 12
Date: Tue, 2 Jan 2007 12:26:32 -0800 (PST)
From: Susan Guerrieri <frizzle530yahoo.com>
Subject: Re: [ibc] tests, scans, markers etc
To: Ruth Coates <racoatesbtc-bci.com>, ibcibcsupport.org
Message-ID: <284477.94498.qmweb35412.mail.mud.yahoo.com>
Content-Type: text/plain
Ruth,
I was also diagnosed in June '06, but went directly to
chemo 4 rounds A/C
every 2 weeks and then 4 rounds Taxol every 2 weeks. I then
had mastectomy
with 9 out of 24 nodes positive. A week after mastectomy I
started Femara
and now am halfway through radiation. My oncologist also
doesn't do tumor
markers, PET scans and such. He tells me that tumor markers
are very
inaccurate and therefore misleading. He says that he is
more interested in
how I feel. I asked about bone scans and he said they also
don't show
anything until it is too late. ( Too late meaning incurable,
but treatable).
It still bothers me not to have scans though. I had scans
at the beginning
of my cancer, and only when I complain about a pain..(I had
chronic.chest
pains for while...turned out to be stress, go figure!). I
think the
oncologists are divided on this issue. I have heard other
doctors feeling
this way also, but it seems to me that the big cancer
centers seem to do
many more tests. My
girlfriend left her oncologist and went to Sloan because
her's wasn't
planning on doing mega testing. She's 5 years clear, but
she would have
been either way, right!!?? I think I am going to talk to my
oncologist
about simple mental health!! A clean scan would just make
me feel happy,
even if it isn't necessarily accurate!
Sue
NY
Ruth Coates <racoatesbtc-bci.com> wrote:
Hello all,
I am also a newbie, and RN, and understand much of the
medical
terminology here. In my journey,6/06 I found a sore lump
that went from
a couple centimeters to about 3 inches long over a weekend.
I saw my
regular internist who promptly got me a mamogram which
showed nothing,
and a ultrasound which showed a "structure" about
.9cm in a duct. at
this point I had a small area at the site that was pink. I
had a
lumpectomy in 7/06 (it took that long to coordinate someone
to operate)
which showed DCIS, plus some very disturbing
undifferentiated cells
outside the ducts, which was felt to be IBC, and no clear
margins. My
surgeon (at the time who was very young) said, "it
can't be IBC, you
don't have peu d'orange skin". I took it upon myself to
call my
favorite Oncologist I work with who said " You need
more surgery to try
and get clear margins and a sentinal node for biopsy".
She called my
surgeon and this we did in later 7/06, with the results of
still no
clear margins, more ductal CA and definite diagnosis of IBC,
with 4 out
of 12 nodes positive, 2 of which were grossly positive on
sight.
My oncologist now ordered the scans, CT chest and abdomen(No
chalky
drinks though all IV contrast), Brain scan, and Bone scan.
All these
came out negative for cancer hot spots thank God! This was
8/06. When
she finally had all the results (waiting is indeed hell!)
she told me
"this is a sh---y cancer but you are not doomed!"
I did 4AC rounds over
8 weeks, and 4 taxotere rounds over 12 weeks. My last chemo
was 12/06
just before Christmas. I have had neulasta for white blood
cell boost,
and am on Arinesp now every 3 wks for red blood cell boost.
I had a chemistry blood test in the beginning and Blood
counts to check
levels. I have bilateral mastectomies coming in January,
with radiation
to follow in February 07.
I have never had a PET scan, tumor markers, or any other
tests thus
far. Should I ask for them?
When I asked my onc about "How do we know it
worked?" she said, " If
the cancer doesn't come back, I'll take the credit."
She's
given me
the impression that scans are fine if you have problems to
look for. If
I asked for them she'd do them, however. She is one who
usually
presents at these conferences on Breast cancer, so I know
she's up to
date with the latest.
Well, I just wanted to have my story told and show that
treatments vary
with individuals and Oncologists. I don't like hearing or
reading the
stats because there are too many variables in this mix to
count on any
numbers for our chances. The idea for me is to keep fighting
with
whatever is in my means, and live my life unshackeled from
the fear of
doing the "wrong thing".
I plan on having reconstruction in the fall of 07 (hey how
else could I
get a boob job and a tummy tuck all at once?) and enjoying
each day I have.
Thanks for listening to my long missive!
Ruth
[list software deleted text/html attachment]
--
** List address: ibcibcsupport.org
** Information - subscribe, unsubscribe, archives, etc.:
** http://www.ibcsupport
.org/list/
** Donations: http://www.i
bcsupport.org/donations.html
__________________________________________________
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection
around
http://mail.yahoo.com
[list software deleted text/html attachment]
------------------------------
Message: 13
Date: Tue, 2 Jan 2007 17:00:13 -0500
From: "Gina Sweeney" <sweeneygrochester.rr.com>
Subject: RE: [ibc] 5 year anniversary today.
To: "'Amy Pitman'" <pitmanrealtyyahoo.com>, "'IBC'"
<ibcibcsupport.org>
Message-ID: <200701022200.l02M0Cq1008310ms-smtp-02.nyroc.rr.com>
Content-Type: text/plain; charset="us-ascii"
Way to go Amy! Conrgatulations!
Gina
Brockport, NY
-----Original Message-----
From: ibc-bouncesibcsupport.org [mailto:ibc-bouncesibcsupport.org] On
Behalf Of Amy Pitman
Sent: Tuesday, January 02, 2007 12:19 PM
To: IBC
Subject: [ibc] 5 year anniversary today.
Hi, Today is my 5 year anniversary from IBC!!!! I am 42
years old and also
have the BRCA2 gene....
I am truly blessed!
Have a great new year.
Amy Pitman
817-247-6692 cell
pitmanrealtyyahoo.com
[list software deleted text/html attachment]
--
** List address: ibcibcsupport.org
** Information - subscribe, unsubscribe, archives, etc.:
** http://www.ibcsupport
.org/list/
** Donations: http://www.i
bcsupport.org/donations.html
------------------------------
Message: 14
Date: Tue, 02 Jan 2007 22:39:49 +0000 (GMT)
From: rtsmith81optonline.net
Subject: Re: [ibc] 5 year anniversary today.
To: Amy Pitman <pitmanrealtyyahoo.com>
Cc: IBC <ibcibcsupport.org>
Message-ID: <db2ca2de1f80e.459adf35optonline.net>
Content-Type: text/plain
Good going Amy. Guess the date makes it easy to remember
but on second
thought, none of our girls ever seem to have trouble
remembering that date.
Keep on keepin' on.. Looking forward to many more January 2
announcements
from you.
Rich in NJ.
----- Original Message -----
From: Amy Pitman
Date: Tuesday, January 2, 2007 12:19 pm
Subject: [ibc] 5 year anniversary today.
To: IBC
> Hi, Today is my 5 year anniversary from IBC!!!! I am 42
years
> old and also have the BRCA2 gene....
>
> I am truly blessed!
>
> Have a great new year.
>
>
> Amy Pitman
> 817-247-6692 cell
> pitmanrealtyyahoo.com
>
>
> [list software deleted text/html attachment]
>
> --
> ** List address: ibcibcsupport.org
> ** Information - subscribe, unsubscribe, archives,
etc.:
> ** http://www.ibcsupport
.org/list/
> ** Donations: http://www.i
bcsupport.org/donations.html
>
[list software deleted text/html attachment]
------------------------------
Message: 15
Date: Tue, 2 Jan 2007 18:07:53 EST
From: SusanRNLACaol.com
Subject: Fwd: [ibc] 100%mortality rate without chemotx
To: ibcibcsupport.org
Message-ID: <c4a.b32f4f5.32cc3fc9aol.com>
Content-Type: text/plain
[list software deleted text/html attachment]
------------------------------
Message: 16
Date: Tue, 2 Jan 2007 18:34:20 -0500
From: "Kathy Patton" <kpattonrcn.com>
Subject: RE: [ibc] Merry Christmas Everyone!
To: "'Barbara Herman'" <evan_my_angelmsn.com>, "'ibc support'"
<ibcibcsupport.org>
Message-ID: <000601c72ec6$872ec4e0$09254e41RUSS>
Content-Type: text/plain; charset="us-ascii"
Barbara and Tom,
Merry Christmas and Happy New Year to you too!
Take care...
Kathy Patton from PA
-----Original Message-----
From: ibc-bouncesibcsupport.org [mailto:ibc-bouncesibcsupport.org] On
Behalf Of Barbara Herman
Sent: Monday, December 25, 2006 1:15 PM
To: ibc support
Subject: [ibc] Merry Christmas Everyone!
TOM and Barbara want to wish each and every one of you a
very MERRY
CHRISTMAS!!! And a very Happy New Year!!!
I'm getting my treatments, hanging in there, please keep
those positive
thoughts and prayers coming. I have a long way to go, but I
know I am
going to make it. Tom has been my rock, it's a blessing to
have him in
my life. Thanks to everyone in the group as well for all
your support
and advice. Hope you and yours are well. Take Care.
Love Barbara and Tom.
[list software deleted text/html attachment]
--
** List address: ibcibcsupport.org
** Information - subscribe, unsubscribe, archives, etc.:
** http://www.ibcsupport
.org/list/
** Donations: http://www.i
bcsupport.org/donations.html
------------------------------
Message: 17
Date: Tue, 2 Jan 2007 18:40:40 -0500
From: "Phyllis Johnson" <phyllishjgmail.com>
Subject: Re: [ibc] Inflammatory breast cancer: Treatment -
MayoClinic.com
To: dly <dydresympatico.ca>
Cc: ibc <ibcibcsupport.org>
Message-ID:
<511a7b9e0701021540y30a37f15qdf1098dbb6619135mail.gmail.com>
Content-Type: text/plain; charset=ISO-8859-1; format=flowed
You are absolutely correct that the information is not very
helpful
without a time frame.
I also noticed that the reference is not to a time when
surgery
preceded chemo, but when surgery was the ONLY treatment.
Phyllis in Concord, NC
Diagnosed in 1998, now well and doing fine
On 1/2/07, dly <dydresympatico.ca> wrote:
> After reading the Mayo Clinic entry I just had to
provide the
> following feedback to their site!
>
> > Your website has this statement:
> > Historically, inflammatory breast cancer was
treated by surgery and
> > was associated with a 100 percent mortality rate.
> > Please correct this to reflect the timeframe
referred to and also
> > express mortality in number of years post surgery
when 100% would
> > be expected to die. We all die sometime!
>
> dly
> dydresympatico.ca
>
>
>
> On 2-Jan-07, at 6:30 PM, ragu cru wrote:
>
> > I was just reading up on IBC on the Mayo clinic
website and found
> > some interesting static's. Someone was asking
about the surgery
> > first survival rate. It states that
"historically" the mortality
> > rates of surgery first were 100%. check it out.
> >
> > Deby/Clackamas, OR
> >
> > http://www.mayoclinic.com/health/inflammator
y-breast-cancer/DS00632/
> > DSECTION=6
> > [list software deleted text/html attachment]
> >
> > --
> > ** List address: ibcibcsupport.org
> > ** Information - subscribe, unsubscribe, archives,
etc.:
> > ** http://www.ibcsupport
.org/list/
> > ** Donations: http://www.i
bcsupport.org/donations.html
>
>
> [list software deleted text/html attachment]
>
> --
> ** List address: ibcibcsupport.org
> ** Information - subscribe, unsubscribe, archives,
etc.:
> ** http://www.ibcsupport
.org/list/
> ** Donations: http://www.i
bcsupport.org/donations.html
>
------------------------------
Message: 18
Date: Tue, 2 Jan 2007 15:44:53 -0800
From: "JShelly" <vshellycomcast.net>
Subject: Re: [ibc] 5 year anniversary today.
To: "IBC" <ibcibcsupport.org>
Message-ID: <008901c72ec8$00acf3e0$6501a8c0jshelly>
Content-Type: text/plain; charset="iso-8859-1"
Congratulations! Woo-hoo!! A great start to another year!!!
Jean, 57, No. Calif.
----- Original Message -----
From: "Amy Pitman" <pitmanrealtyyahoo.com>
To: "IBC" <ibcibcsupport.org>
Sent: Tuesday, January 02, 2007 9:19 AM
Subject: [ibc] 5 year anniversary today.
> Hi, Today is my 5 year anniversary from IBC!!!! I am 42
years old and also
have the BRCA2 gene....
>
> I am truly blessed!
>
> Have a great new year.
>
>
> Amy Pitman
> 817-247-6692 cell
> pitmanrealtyyahoo.com
>
>
> [list software deleted text/html attachment]
>
> --
> ** List address: ibcibcsupport.org
> ** Information - subscribe, unsubscribe, archives,
etc.:
> ** http://www.ibcsupport
.org/list/
> ** Donations: http://www.i
bcsupport.org/donations.html
>
------------------------------
Message: 19
Date: Tue, 2 Jan 2007 16:00:29 -0800
From: "JShelly" <vshellycomcast.net>
Subject: Re: [ibc] Tykerb/Herceptiln trial - Tykerb/Xeloda
To: <ibcibcsupport.org>
Message-ID: <00b501c72eca$2e5bad20$6501a8c0jshelly>
Content-Type: text/plain; charset="iso-8859-1"
Hi, Saskia. I just wanted to urge you to not stop taking
something without
telling your onc. I think perhaps you should direct these
questions to
him/her before you do anything else. Perhaps taking the
Xeloda with the
Tykerb makes the Xeloda work more for you than it did after
3 years of
taking it with the Herceptin. The drugs probably work
synergistically and
that is the whole point of the trials--to find out just how
well they work
with each other.
I also know from personal experience that the body becomes
used to drugs at
the same level (dosage) after a time and they seem to lose
their
effectiveness. However, taking some time off of them (or
using a different
combination of drugs) does help. I take an
anti-inflammatory and a muscle
relaxer because of the fibromyalgia. When the best
combination (Motrin 800
mg & Robaxin 750 mg) stops working for me (and my
muscles get so stiff that
it is hard to move--not to mention painful), and my doctor
suggests
increasing the dosages, I decline and we switch to Vicodin
& Soma which I
will take for about a year (they don't work as well for me)
and then we go
back to the Motrin and Robaxin. I've been doing that for
years now, so we
never need to increase the dosages of any of the
medications. After a year
off of the Motrin and Robaxin, they work well for me again
as my body isn't
used to them anymore.
HTH! Best wishes!
Jean, 57, No. Calif.
----- Original Message -----
From: "saskia schoofs" <saskiakasper.be>
To: "Shirley & Clare Beezley"
<scbeezley54austin.rr.com>
Cc: <ibcibcsupport.org>
Sent: Tuesday, January 02, 2007 10:24 AM
Subject: Re: [ibc] Tykerb/Herceptiln trial - Tykerb/Xeloda
> Hi Shirley,
>
> I am on Xeloda/Tykerb since the beginning of December.
Only, I am rather
> confused, as half a year ago my onc told me that Xeloda
didn't work for
> me at all anymore (after about 3 years on the stuff) (I
was on
> Xeloda/Herceptin) and that it had no use to take it
anymore, that I just
> had to wait for the Tykerb to become available. So I
didn't take
> anything for some months. And now I have to take Xeloda
with Tykerb.
>
> I don't understand. Does anyone know if Xeloda could be
active again
> because it is combined with another drug? My onc just
says I have to
> take it because it is part of the trial and otherwise I
can't be in it.
> But as I am troubled by it (hand/foot syndrome), the
idea that I take it
> with all its disadvantages (for me, at this moment! It
has worked really
> well for more than two years and it saved me, together
with Herceptin)
> and no advantage at all is not motivating and I even
think of not taking
> my Xeloda anymore and just not tell my onc. Which, I
think, is one step
> too far in my tendency (after almost 7 years of taking
everything
> without criticism ) to think
I am a doctor myself
>
> Happy New Year to all!
>
> Saskia in Belgium
>
> dx 3/2000
> --
> ** List address: ibcibcsupport.org
> ** Information - subscribe, unsubscribe, archives,
etc.:
> ** http://www.ibcsupport
.org/list/
> ** Donations: http://www.i
bcsupport.org/donations.html
>
------------------------------
Message: 20
Date: Tue, 2 Jan 2007 16:13:01 -0800
From: "JShelly" <vshellycomcast.net>
Subject: Re: [ibc] Inflammatory breast cancer: Treatment -
MayoClinic.com
To: "ibc" <ibcibcsupport.org>
Message-ID: <00c901c72ecb$eecb7b20$6501a8c0jshelly>
Content-Type: text/plain; charset="iso-8859-1"
Thanks for posting this, Deby, it was very interesting. I
do wish they
would give a little more info though. Does that mean that
"historically"
they only did the surgery and then left the patients to
either live or die
with no follow-up treatment/care? And just how long after
the surgery did
their patients live (on the average)? Days, weeks, months,
years? Some
figures would be helpful here. As I've told Susan, I have a
big problem
with most flat statements that we are to accept as true
without asking how
they arrived at that conclusion. Did those who died, die
from the cancer
alone or did some of them die in car accidents or from other
health
problems? Did they do studies? How long were the studies
and how many
people were involved? They give no background to tell us
how they got to
that statement.
Does that mean that older women who have other health
problems that makes
them ineligible for chemotherapy should skip the surgery
too? As I've said
before, LIFE has a 100% mortality rate--none of us are going
to live
forever!
Jean, 57, No. Calif.
----- Original Message -----
From: "ragu cru" <gonagetucomcast.net>
To: "ibc" <ibcibcsupport.org>
Sent: Tuesday, January 02, 2007 10:30 AM
Subject: [ibc] Inflammatory breast cancer: Treatment -
MayoClinic.com
> I was just reading up on IBC on the Mayo clinic website
and found some
interesting static's. Someone was asking about the surgery
first survival
rate. It states that "historically" the mortality
rates of surgery first
were 100%. check it out.
>
> Deby/Clackamas, OR
>
>
http://www.mayoclinic.com/health/inf
lammatory-breast-cancer/DS00632/DSECTION
=6
> [list software deleted text/html attachment]
>
> --
> ** List address: ibcibcsupport.org
> ** Information - subscribe, unsubscribe, archives,
etc.:
> ** http://www.ibcsupport
.org/list/
> ** Donations: http://www.i
bcsupport.org/donations.html
>
------------------------------
Message: 21
Date: Tue, 2 Jan 2007 16:14:13 -0800
From: "JShelly" <vshellycomcast.net>
Subject: Re: [ibc] Inflammatory breast cancer: Treatment -
MayoClinic.com
To: <ibcibcsupport.org>
Message-ID: <00cf01c72ecc$19826310$6501a8c0jshelly>
Content-Type: text/plain; charset="iso-8859-1"
Thank you!
Jean, 57, No. Calif.
----- Original Message -----
From: "dly" <dydresympatico.ca>
To: "ragu cru" <gonagetucomcast.net>
Cc: "ibc" <ibcibcsupport.org>
Sent: Tuesday, January 02, 2007 10:51 AM
Subject: Re: [ibc] Inflammatory breast cancer: Treatment -
MayoClinic.com
> After reading the Mayo Clinic entry I just had to
provide the
> following feedback to their site!
>
> > Your website has this statement:
> > Historically, inflammatory breast cancer was
treated by surgery and
> > was associated with a 100 percent mortality rate.
> > Please correct this to reflect the timeframe
referred to and also
> > express mortality in number of years post surgery
when 100% would
> > be expected to die. We all die sometime!
>
> dly
> dydresympatico.ca
>
>
>
> On 2-Jan-07, at 6:30 PM, ragu cru wrote:
>
> > I was just reading up on IBC on the Mayo clinic
website and found
> > some interesting static's. Someone was asking
about the surgery
> > first survival rate. It states that
"historically" the mortality
> > rates of surgery first were 100%. check it out.
> >
> > Deby/Clackamas, OR
> >
> > http://www.mayoclinic.com/health/inflammator
y-breast-cancer/DS00632/
> > DSECTION=6
> > [list software deleted text/html attachment]
> >
> > --
> > ** List address: ibcibcsupport.org
> > ** Information - subscribe, unsubscribe, archives,
etc.:
> > ** http://www.ibcsupport
.org/list/
> > ** Donations: http://www.i
bcsupport.org/donations.html
>
>
> [list software deleted text/html attachment]
>
> --
> ** List address: ibcibcsupport.org
> ** Information - subscribe, unsubscribe, archives,
etc.:
> ** http://www.ibcsupport
.org/list/
> ** Donations: http://www.i
bcsupport.org/donations.html
>
------------------------------
Message: 22
Date: Wed, 3 Jan 2007 08:21:17 +0700
From: "Fiona Thomson" <fionathomsonbrandtman.com>
Subject: RE: [ibc] risk of IBC/BC
To: "April H" <spring_9hotmail.com>,
<ibcibcsupport.org>, "Fiona
Thomson" <fionathomsonbrandtman.com>
Message-ID:
<3A383C1F5814764C84CAFA5AC9654D3D0C8566tb01.thomsonbrandtman.int>
Content-Type: text/plain
Dear April,
You mother can investigate being checked for the breast
cancer gene,
it's a complicated issue whether you are more likely to get
it or not,
my mother had breast cancer post menopausal and the experts
normally
consider that post menopausal and pre menopausal are not
linked, i.e. I
shouldn't have had any higher chance of developing IBC but I
did.
I am getting genetically tested as I have two daughters,
people who have
the genes are at a much higher risk, so for me I want to
know for my
daughters sake (they can then make their own decision on
whether they
are tested or not and what they do, I will write them a
letter saying
get tested but hope by that stage breast cancer has been
wipe out. I
also have a sister with two daughters so its important she
knows.
Fiona
Single mother (44 yrs old) with two daughters 2 year old and
six years
old was living in Bangkok with my own consulting business
when diagnosed
Jan 06 after six months of being told I had mastitis &
blocked milk
ducts (five hospitals, nine doctors two surgeons all got it
wrong
including a breast cancer centre), immediately moved back to
Sydney,
Australia - Stage IV - Mets to Bone T9 & L4, lymph
glands left and right
arm, gland behind breast bone, ER-/PR-/HER2+++ started Chemo
14th Feb 06
- FEC x 1 /Herceptin x 1 then switched to weekly Taxotere
70mg/Herceptin
200mg six weeks on, two weeks herceptin only. Scans done
6/06 great
results, some of my team believe its arthritis at L4 not
cancer and
significant improvement everywhere, double mastectomy done
20/7/06 with
axillary clearance both sides 22 glands from left, 13 from
right, lymph
glands totally clear (yippee), DCIS small pocket found in
left breast,
nothing in right breast, more of the same chemotherapy, Bone
Scan L4
uptake T9 gone, MRI clear, PET scan no active cancer,
radiation twice
per days seven fields completed 12/06, more chemo planned
for the new
year.
________________________________
From: ibc-bouncesibcsupport.org [mailto:ibc-bouncesibcsupport.org] On
Behalf Of April H
Sent: Tuesday, 2 January 2007 1:02 AM
To: ibcibcsupport.org
Subject: [ibc] risk of IBC/BC
Happy New Year to all of you and may 2007 be a wonderful
year. I have a
question. My mom has IBC, diagnosed at age 73 (in 2006). I
have spent
the last 7 months so focused on her medical care, that I am
only now
starting to think about myslef. I know that if a first
degree relative
has breast cancer (lke a mother or sister) a woman is more
likely to get
BC. Is it the same for IBC? For example, because my mom
has IBC, am I
at more of a risk for IBC, as well as regular BC? I keep
meaning to ask
my mom 's doc, and will ask my own next time I go in, but
was just
wondering. I am now so aware of BC and IBC issues I can
sometimes drive
myself a bit crazy thinking about it! I am 33
years old, no other
BC in family.
Thank you for any info you might be able to give me.
April
________________________________
Get FREE Web site and company branded e-mail from Microsoft
Office Live
<http://g
.msn.com/8HMBENUS/2734??PS=47575>
[list software deleted text/html attachment]
------------------------------
Message: 23
Date: Wed, 3 Jan 2007 08:21:17 +0700
From: "Fiona Thomson" <fionathomsonbrandtman.com>
Subject: RE: [ibc] IBC & diet
To: <Supurmaggieaol.com>, <ibcibcsupport.org>, "Fiona Thomson"
<fionathomsonbrandtman.com>
Message-ID:
<3A383C1F5814764C84CAFA5AC9654D3D0C8565tb01.thomsonbrandtman.int>
Content-Type: text/plain; charset="us-ascii"
Dear Maggie,
This is one of those sensitive subjects that no one can
answer with
proven backup.
I have been on the no dairy diet (janet plant book),
vegetarian etc etc
and finally given up, on any one particularly diet.
Obviously a balanced
diet is the best way to go, however if you are having
treatment this is
often impossible to do, my attitude now is try to go with a
balanced
diet but also enjoy what foods I like. I have finally got my
taste back
after eleven months of chemo and really enjoying food, with
the thought
of more chemo ahead of me, its enjoy food while I have the
chance.
There are foods which they say protect against cancer like
crucifix
vegetables, broccoli, cauliflower, brussel sprouts etc but
that is when
you don't have cancer, what effect they have when you have
cancer is
anyone's guess.
The no sugar issue is based on some scans picking up fast
glucose
burning cells, i.e. cancer cells metabolize glucose faster
and show up
on the scan, thus some people think no sugar is a good idea.
You have to
remember that the rest of the body also runs on glucose and
if only
cutting out sugar solved things then it would be brilliant.
Good luck with whichever way you decide to go.
Fiona
Single mother (44 yrs old) with two daughters 2 year old and
six years
old was living in Bangkok with my own consulting business
when diagnosed
Jan 06 after six months of being told I had mastitis &
blocked milk
ducts (five hospitals, nine doctors two surgeons all got it
wrong
including a breast cancer centre), immediately moved back to
Sydney,
Australia - Stage IV - Mets to Bone T9 & L4, lymph
glands left and right
arm, gland behind breast bone, ER-/PR-/HER2+++ started Chemo
14th Feb 06
- FEC x 1 /Herceptin x 1 then switched to weekly Taxotere
70mg/Herceptin
200mg six weeks on, two weeks herceptin only. Scans done
6/06 great
results, some of my team believe its arthritis at L4 not
cancer and
significant improvement everywhere, double mastectomy done
20/7/06 with
axillary clearance both sides 22 glands from left, 13 from
right, lymph
glands totally clear (yippee), DCIS small pocket found in
left breast,
nothing in right breast, more of the same chemotherapy, Bone
Scan L4
uptake T9 gone, MRI clear, PET scan no active cancer,
radiation twice
per days seven fields completed 12/06, more chemo planned
for the new
year.
-----Original Message-----
From: ibc-bouncesibcsupport.org [mailto:ibc-bouncesibcsupport.org] On
Behalf Of Supurmaggieaol.com
Sent: Tuesday, 2 January 2007 5:01 AM
To: ibcibcsupport.org
Subject: [ibc] IBC & diet
Can anyone direct me to a proper diet for IBC patients?
I've read
everything from no sugar to no fruit and veggies, etc. My
Dr. says
eat what you want
but EAT. by the time I read shat we aren't supposed to
eat, there
isn't
anything else left to eat.
I'M seeing this "sugar loves cancer", but what
about IBC. I couldn't
find
specifics for IBC. My doctor says that if the cancer
doesn't get it'll
just
eat something else. My good friends say the same. What is
one to do?
Maggie in MI
[list software deleted text/html attachment]
--
** List address: ibcibcsupport.org
** Information - subscribe, unsubscribe, archives, etc.:
** http://www.ibcsupport
.org/list/
** Donations: http://www.i
bcsupport.org/donations.html
------------------------------
Message: 24
Date: Tue, 2 Jan 2007 17:38:42 -0800
From: Carolyn Gallaghan <cgallaghancomcast.net>
Subject: Re: [ibc] 5 year anniversary today.
To: Amy Pitman <pitmanrealtyyahoo.com>
Cc: IBC <ibcibcsupport.org>
Message-ID: <46CE23F2-514C-44A1-8277-F7A13C4FCBFAcomcast.net>
Content-Type: text/plain; charset=US-ASCII; delsp=yes;
format=flowed
Congratulations AMY!!!!
Carolyn in Fresno, Ca
On Jan 2, 2007, at 9:19 AM, Amy Pitman wrote:
Hi, Today is my 5 year anniversary from IBC!!!! I am 42
years old and
also have the BRCA2 gene....
I am truly blessed!
Have a great new year.
Amy Pitman
817-247-6692 cell
pitmanrealtyyahoo.com
[list software deleted text/html attachment]
--
** List address: ibcibcsupport.org
** Information - subscribe, unsubscribe, archives, etc.:
** http://www.ibcsupport
.org/list/
** Donations: http://www.i
bcsupport.org/donations.html
------------------------------
Message: 25
Date: Wed, 3 Jan 2007 08:36:29 +0700
From: "Fiona Thomson" <fionathomsonbrandtman.com>
Subject: RE: [ibc] 5 year anniversary today.
To: "Amy Pitman" <pitmanrealtyyahoo.com>, "IBC" <ibcibcsupport.org>,
"Fiona Thomson" <fionathomsonbrandtman.com>
Message-ID:
<3A383C1F5814764C84CAFA5AC9654D3D0C8567tb01.thomsonbrandtman.int>
Content-Type: text/plain; charset="us-ascii"
Amy,
Wonderful wonderful news, hope you are truly enjoying life.
Interesting to hear you have the BRCA2 gene, is there anyone
else on the
list positive?
Fiona
-----Original Message-----
From: ibc-bouncesibcsupport.org [mailto:ibc-bouncesibcsupport.org] On
Behalf Of Amy Pitman
Sent: Wednesday, 3 January 2007 12:19 AM
To: IBC
Subject: [ibc] 5 year anniversary today.
Hi, Today is my 5 year anniversary from IBC!!!! I am 42
years old and
also have the BRCA2 gene....
I am truly blessed!
Have a great new year.
Amy Pitman
817-247-6692 cell
pitmanrealtyyahoo.com
[list software deleted text/html attachment]
--
** List address: ibcibcsupport.org
** Information - subscribe, unsubscribe, archives, etc.:
** http://www.ibcsupport
.org/list/
** Donations: http://www.i
bcsupport.org/donations.html
------------------------------
Message: 26
Date: Tue, 2 Jan 2007 18:03:06 -0800 (PST)
From: Judi Beil <judibsbcglobal.net>
Subject: Re: [ibc] risk of IBC/BC - genetic testing
To: "Dr. Virginia R. Hetrick" <drjuicegte.net>, Gurpreet Birgi
<gurpreetbirgiyahoo.com>
Cc: ibcibcsupport.org
Message-ID: <337177.90522.qmweb81108.mail.mud.yahoo.com>
Content-Type: text/plain; charset=iso-8859-1
Hi everyone,
Since I was diagnosed with IBC 3 months ago, and my
ex-husband's mother
died from
BC, and we are Ashkenazi Jews by heritage, I had suggested
to my 26 year old
daughter that she talk to her gyn/ob about whether she
should consider
genetic
counseling/testing.
HERE'S the INTERESTING PART: My daughter was told that if
you had the test
and it
came out positive for a BC defect, that info would remain
part of her
medical
history. If she were ever to need or want to obtain health
care insurance
(right now
she has it thru her job, but if she goes out on her own,
she'd need to get
her own
coverage), long or short term disability insurance or long
term care
insurance, she
would either be turned down or have to pay exhorbitant
premiums. Does anyone
know if
this is true?
I know that this past summer I had decided to buy long term
care insurance
and was
researching different companies. Before I had the chance to
decide which
company to
go with, I was diagnosed, and was told that I would need to
be NED for 5-10
years
before any of the companies would insure me. Naturally the
premiums would be
much
higher than they would have been if I bought it before my
diagnosis, and
also
because of my age in 5-10 years. FYI, the premiums really
jump at age 60
even if
you're in good health, so I thought 57 was a good age to
look into it. Ahhh,
if I
had only not lagged on making a decision and done it sooner!
judi
--- "Dr. Virginia R. Hetrick" <drjuicegte.net> wrote:
> Hi, Rosy -
>
> BrCa1 and BrCa2 are the only two known somatic
(inherited) genetic
> defects that have been directly related to breast
cancer or ovarian
> cancer. Both are generally found in what are
frequently referred to as
> ghettoized (in the historic sense) populations.
Ashkenazi Jews,
> Icelanders, Singapore and Hong Kong Chinese are three
groups that have a
> high incidence of these genetic defects.
>
> It is important to understand that this testing is a
non-trivial matter,
> not in the sense of the difficulty of doing the test,
but because there
> can be long-term consequences that a simple request for
testing hides.
> An important aspect of any genetic testing is the issue
of what the
> person being tested and his/her family will do with the
information.
> And, a clinical geneticist will make sure that this
issue is addressed
> in counseling before recommending testing.
>
> As an example, the lady who discovered the genetic
defect that results
> in Huntington's Chorea, which her Mom and also the
singer, Woodie
> Guthrie, both had, decided that, if she knew that she
had the genetic
> defect, that information would change what she would do
in her life in a
> not-good way. So, she decided not to be tested herself
and to go on with
> her life as she had already planned it. As things have
turned out, she
> is around 55-60 at this time and has not developed the
characteristics
> of HC, so probably does not have the genetic defect (it
usually shows up
> in the person's 30s or early 40s at the latest).
>
> If a patient requests testing, the geneticist will
first work out a
> family history in pretty great detail that will show
what the overall
> family situation is. Certain patterns show up in the
history that are
> characteristic of the presence of these two defects.
If those patterns
> are present, the geneticist will then recommend
testing.
>
> Additionally, even if the geneticist does recommend
testing, you and
> your family should have a rather lengthy discussion
about how you are
> going to handle the information in the family. For
example, no children
> under 18 will be recommended for testing simply because
they cannot make
> an informed medical decision about what to do with the
information.
> But, what if some older member of the family decides
s/he does not want
> to be tested. Will members who do want to be tested
respect that
> member's desire not to know anything about the outcome
of the testing?
> Most family members would find this the most difficult
aspect to honor.
>
> I hope this helps you make a decision about testing and
to understand
> why a responsible clinical geneticist may not recommend
testing for your
> family as well as why your family has a huge number of
issues to
> consider besides just wanting to have the testing
performed.
>
> v
> <>--
> / Virginia R. Hetrick, here in sunny California
> 0 Email: drjuicegte.net
> Oo "There is always hope."
> My fave: http:
//www.washington.edu/cambots/camera1_l.gif
> --
> ** List address: ibcibcsupport.org
> ** Information - subscribe, unsubscribe, archives,
etc.:
> ** http://www.ibcsupport
.org/list/
> ** Donations: http://www.i
bcsupport.org/donations.html
>
End of ibc Digest, Vol 37, Issue 4
**********************************
--
No virus found in this incoming message.
Checked by AVG Free Edition.
Version: 7.1.409 / Virus Database: 268.16.4/615 - Release
Date: 1/3/2007
--
No virus found in this outgoing message.
Checked by AVG Free Edition.
Version: 7.1.410 / Virus Database: 268.16.6/617 - Release
Date: 1/5/2007
--
** List address: ibcibcsupport.org
** Information - subscribe, unsubscribe, archives, etc.:
** http://www.ibcsupport
.org/list/
** Donations: http://www.i
bcsupport.org/donations.html
|
