Hi,
I am new to all of this. I was seen by my doctor on Aug.
15th and told I have IBC. From there I had to keep bugging
them for by biopsy. I finally got it on Aug.23. Now I feel I
am bugging them to let me know the results, and lets get
this thing going. I feel like I am the only one who wants to
do anything about this. I feel like they maybe feel it is
too late for me. I don't even know what stage I am in-I
know nothing at all, except that I do have it. I am very
frustrated and scared. Thanks for listening-I don't know
where to turn.
Michelle in San Antonio
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When replying, please edit your Subject line so it is more
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than "Re: Contents of ibc digest..."
Today's Topics:
1. Re: bone pain (Tammy Jo)
2. Almost time for my masectomy (Elizabeth Sommers)
3. Scan Results In...NED so far! (Lori Bernhardt)
4. Re: Almost time for my masectomy (bhartotraol.com)
5. exhausted and now with severe back pain (Auersmithpubaol.com)
6. (no subject) (Mistysluvaol.com)
7. Re: (no subject) (Mary Ann Weiss)
8. Re: Lori - severe back pain (Laura Reinhart)
9. Fw: [ibc] Sad Week (JShelly)
10. Re: Sad Week (JShelly)
11. RE: Almost time for my masectomy (Susan Bumgarner)
12. RE: exhausted and now with severe back pain (Susan
Bumgarner)
13. RE: (no subject) (Susan Bumgarner)
14. RE: (no subject) (Laura Reinhart)
15. (no subject) (Pati Wilson)
16. Re: Scan Results In...NED so far! (rtsmith81optonline.net)
17. Re: Almost time for my masectomy (rtsmith81optonline.net)
18. RE: Lori - severe back pain (Patrick and Bonnie)
19. Reconstruction (EllenWallaol.com)
20. Re: Sad Week (Julie Fischer)
21. Re: Almost time for my masectomy (Mistysluvaol.com)
22. Re: Sad Week (Mistysluvaol.com)
23. Re: Scan Results In...NED so far! (JShelly)
24. Remedy for radiation scars (rwarren951aol.com)
25. RE: Remedy for radiation scars (Fiona Thomson)
26. RE: Almost time for my mastectomy (Fiona Thomson)
27. RE: Scan Results In...NED so far! (Fiona Thomson)
------------------------------------------------------------
----------
Message: 1
Date: Mon, 28 Aug 2006 16:16:48 GMT
From: "Tammy Jo"
Subject: Re: [ibc] bone pain
To: jwilk63optonline.net, ibcibcsupport.org
Message-ID: <20060828.091746.4551.668888webmail25.nyc.untd.com>
Content-Type: text/plain
Hi Sherry,
I had the same bone pain from the shots and from the Tax
chemos just like others have had on this list.
Unfortunately, the nerve meds, like neurontin, didn't help
me; but, they do help most people. My doc put me on Loritab
for the pain. I also found that I felt better if I stayed
warm. Cold would make me hurt more. Sitting outside in the
spring/summer time with a blanket around me was normal! With
time, it did go away. I'm no longer on loritab for pain. I
still wrap up in blankets....must be a "comfort"
thing! It took awhile for my pain to stop but others have
had their pain stop within weeks of stopping the shots or
chemo. Your Sister needs to let her doc know asap so they
can help her with the side affects.
My prayers are with you and your Sister. I'm sorry that
your Sister has been dx with ibc but we are glad you have
found this support group. The men and women here are so
caring, informative and supportive, with big hearts. Please
call upon us anytime and we will do what we can to help!
Remember, you are already doing so much for your Sister. You
are there!
Sending warm, comforting hugs to both of you,
Tammy Jo - Fighting strong in Kentucky....Tigger style!
Dx IBC Stage IIIB 8-30-04 age37 ER-PR+Her2+ (ned 14months)
Dx Stage IV 8-17-06 w/mets to various lymphnodes - in tx.
ht
tp://www.caringbridge.org/visit/tammyjomoyerlaws
-- James Wilkinson wrote:
This is my first time writing on this site. I don't know
were to begin, my sister 32 yrs old , single mom of a 3 yr.
old has been diag. with Ibc stage 3. She had her first chemo
and a shot the next day to help with her cells. She is
having so much bone pain, does anyone know of anything that
will help. Please I'm so desperate to help her !
Hoping and praying,
Sherry
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------------------------------
Message: 2
Date: Mon, 28 Aug 2006 11:11:54 -0700 (PDT)
From: Elizabeth Sommers
Subject: [ibc] Almost time for my masectomy
To: ibcibcsupport.org
Message-ID: <20060828181154.80810.qmailweb55512.mail.re4.yahoo.com>
Content-Type: text/plain
Dear IBC-ers--
Even though I've accepted the fact that I need to lose my
right breast to save my life, I'm horrified that IBC has
ravaged my body to the degree it has since June 15th.
Everybody is so brave that you help me a great deal but I
wonder if scheduling the actual surgery & then waiting
is tough for others. I anticipate surgery in late September
or early October & will ask for your prayers then, as I
ask for your support now & always.
Thanks always--
Libby
Elizabeth Sommers
diagnosed 6-15-06
4 of 6 chemotherapy (ACT, dense dose)
Right MRM this fall
Radiation twice a day for six weeks
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------------------------------
Message: 3
Date: Mon, 28 Aug 2006 11:35:14 -0700 (PDT)
From: Lori Bernhardt
Subject: [ibc] Scan Results In...NED so far!
To: ibcibcsupport.org
Message-ID: <20060828183514.23167.qmailweb32609.mail.mud.yahoo.com>
Content-Type: text/plain
Hello Everyone,
My scans came back all clear! The small liver spots are
still there but haven't grown so my onc/doc says he
doesn't think they're cancer related but we'll continue
to monitor them anyway. The lymph nodes that were enlarged
in my chest are back to normal. After I'm through with
radiation I get to make my 3 month checkup. I hesitated to
say I'm NED for fear of jinxing it but decided to go ahead
with it anyway. You all know very well how scary of a
journey this is! Radiation has wiped me out so I haven't
been posting much. I am officially scheduled to start
Graduate School in Psychology starting September 5th so I am
looking forward to that!
My prayers are with each and every one of you!
Love,
Lori
Dx. 2/14/2006 Age 36
ER+/PR- HER-2 Absent
Dose dense A/Cx4 & Taxolx4 w/Neulasta boost
CT/Bone Scan 3/17/2006 small liver spots, grey
area around left rib cage, water on rt.lung
MRI in 5/06 water on lung gone!
Started Tamoxifen 20mg for a 5 year run
Rt. MRM 6/30/2006 - 13/14 positive nodes
Residual cancer found in breast, clear margins!
34 Rads + 10 Boosts to finish 9/01/06 (twice daily for 4
weeks)
Scans clear NED!
http://www.myspace.c
om/cheeshd32
---------------------------------
Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the
US (and 30+ countries) for 2¢/min or less.
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------------------------------
Message: 4
Date: Mon, 28 Aug 2006 14:56:09 -0400
From: bhartotraol.com
Subject: Re: [ibc] Almost time for my masectomy
To: amazonian_rhetoricianyahoo.com, ibcibcsupport.org
Message-ID: <8C898EAC2234C00-9C0-6A9mblk-d22.sysops.aol.com>
Content-Type: text/plain
Hey Libby,
I can remember oh so easily the feelings I had at that time
but tried so hard to focus on the fact that I wanted all of
the cancer removed and on with treatments to do the fight
necessaary to LIVE! And fight I have and will continue.
Yeah, its a loss and yes you may mourn the loss but stay
focused to your wanting to live. Yes, I wanted the one hit
wonder surgery with reconstruction at the time of the
mascetomy but that was not to happen! So, I soon learned
life can and does go on as the one "t_ _ "
wonder I now call myself! The prosthesis is alright by me. I
am fortunate to have a great shop with truly sincere and
very knowledgeable women who know boobs and breast cancer
all too well. If you are in need of one great place check
out the Profile Shop in PA. But, I am sure there are great
places in your region. Know that the first thing you will
want is the tshirt type thing with a cotton insert. I got
mine the morning I came home from my surgeon.. It worked
just fine in the be
ginning.
As for prep in the surgery. A group of friends actually took
me out to dinner and we had many a laughs and hugs. It was
kind of the farewell to the boob event. But I felt
surrounded by a group of caring and loving individuals who
held on for quite sometime. Sad to say, so many of them seem
to have fallen off the radar now and our paths have gone in
different directions. BUT the sincere ones are still hanging
in there. AND trust me, I treasure them and their friendship
more then words can ever say! The others oh well.
Hang in there. Keep focused and ask away. The gang is here.
Although its been unbelieveable quiet lately, or maybe its
been just me. I've been on a whirlwind lately. Hopefully
things will calm down now that my daughter is back to
college!!!!
Wishing you the best,
Barbara in NJ
Dx in July 2002
-----Original Message-----
From: amazonian_rhetoricianyahoo.com
To: ibcibcsupport.org
Sent: Mon, 28 Aug 2006 2:11 PM
Subject: [ibc] Almost time for my masectomy
Dear IBC-ers--
Even though I've accepted the fact that I need to lose my
right breast to save
my life, I'm horrified that IBC has ravaged my body to the
degree it has since
June 15th. Everybody is so brave that you help me a great
deal but I wonder if
scheduling the actual surgery & then waiting is tough
for others. I anticipate
surgery in late September or early October & will ask
for your prayers then, as
I ask for your support now & always.
Thanks always--
Libby
Elizabeth Sommers
diagnosed 6-15-06
4 of 6 chemotherapy (ACT, dense dose)
Right MRM this fall
Radiation twice a day for six weeks
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** Information - subscribe, unsubscribe, archives, etc.:
** http://www.ibcsupport
.org/list/
** Donations: http://www.i
bcsupport.org/donations.html
____________________________________________________________
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------------------------------
Message: 5
Date: Mon, 28 Aug 2006 15:09:11 EDT
From: Auersmithpubaol.com
Subject: [ibc] exhausted and now with severe back pain
To: ibcibcsupport.org
Message-ID:
Content-Type: text/plain
Thank you for all your responses. It helps to know that you
are not
alone..and that there are people who know how you are
feeling. I am now
experiencing along with exhaustion severe back pain. It's
hard to sit or bend over...I
feel like I am spending way too much time in bed. I have
called my doctor
and will be seeing my local oncologist tomorrow. My question
is, has anyone had
this and what did it end up being? It's in my lower back
and the pain is
constant..worse when I try to sit or bend over.
Thanks
Lori
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Message: 6
Date: Mon, 28 Aug 2006 15:15:28 EDT
From: Mistysluvaol.com
Subject: [ibc] (no subject)
To: IBCLISTSERV.ACOR.ORG, ibcibcsupport.org
Message-ID: <46d.5e6477c.32249ad0aol.com>
Content-Type: text/plain
Could someone tell me what the procedure with Muga Scans are
when taking
Herceptin, I have asked my doctor twice because of the
little funny feelings I
am getting in my heart and he said in 6 months he will do
one...I had one
before I had my first chemo A/C but not since... I have been
on Herceptin since
end of April this yr. I thought I read somewhere it was
every 3 months.. the
pain I was having swallowing and down in my right side of my
chest, felt like
the food was pushing by something and it was painful... well
the doctor said
he thinks it is just anxiety.. i also have a sore spot on
the back ribs and
I am belching alot.. I never belched before
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Message: 7
Date: Mon, 28 Aug 2006 13:00:44 -0700 (PDT)
From: Mary Ann Weiss
Subject: Re: [ibc] (no subject)
To: Mistysluvaol.com
Cc: ibcibcsupport.org
Message-ID: <20060828200044.25347.qmailweb51013.mail.yahoo.com>
Content-Type: text/plain
Hi Misty,
I can only tell you of my experience which was almost 7
years ago - so standards may have changed.
I had a muga prior to start of chemo and a muga after
completion of 6 months of herceptin.
Some of the symptoms you mention sound a bit like acid
reflux - which I definitely had after the start of chemo
(adriamyacin/taxotere). Onc gave me Prilosec which cleared
it up within a few days.
However, re your concern about your heart - seems to be that
you should have this checked out. Not sure how a doctor can
tell if chest pain is heart related or anxiety related -
UNLESS he/she has done some tests to rule out one or the
other. AND, if it's caused by anxiety, why not give you
something to relieve some of your anxiety???
Does your onc really LISTEN to you and does he/she fully
answer your questions? If not, might be a good time to seek
out a 2nd opinion.
Regards,
Mary Ann
Could someone tell me what the procedure with Muga Scans are
when
taking
Herceptin, I have asked my doctor twice because of the
little funny
feelings I
am getting in my heart and he said in 6 months he will do
one...I had
one
before I had my first chemo A/C but not since... I have been
on
Herceptin since
end of April this yr. I thought I read somewhere it was
every 3
months.. the
pain I was having swallowing and down in my right side of my
chest,
felt like
the food was pushing by something and it was painful... well
the
doctor said
he thinks it is just anxiety.. i also have a sore spot on
the back
ribs and
I am belching alot.. I never belched before
Diagnosed with Inflammatory Breast Cancer (Stage IIIB) at
age 52 - 8/16/99
Treatment began 8/17/99 - 5 days after noticing symptoms
4 rounds Adriamyacin & Taxotere
Bilateral mastectomies
Taxol every 3 weeks for 4 months
36 rounds radiation
6 months weekly herceptin
NED - and praying that each of you will be, too.
Happily married for 29 years
Two beautiful daughters (now grown - sort of)
Also have 4 adorable cats
Now designing/sewing and Selling (God willing) chemo hats,
check me out at:
http://www.cjhats.com
OR, If you prefer eBay:
http://stores.ebay.com/
cjhats
I also sell Comfort Pockets - for post surgical drains
---------------------------------
All-new Yahoo! Mail - Fire up a more powerful email and get
things done faster.
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------------------------------
Message: 8
Date: Mon, 28 Aug 2006 13:48:09 -0700 (PDT)
From: Laura Reinhart
Subject: Re: [ibc] Lori - severe back pain
To: Auersmithpubaol.com, ibcibcsupport.org
Message-ID: <20060828204809.48058.qmailweb83009.mail.mud.yahoo.com>
Content-Type: text/plain
Hi Lori - there are probably many things this could be, so
ask your onc or primary care doc what could be causing this.
Could be many things. I've had issues with my lower back
for years and know my disks are bulging a bit due to all the
waitressing I did in my college years, complicated by years
of travelling on an airplane and dragging a rolling bag
behind me. Unfortunately, the chemo I've been on and the
Neupogen I take, don't make this bad back of mine any
better - and immune system boosters are notorius for
affecting spines & hips (common hard working bone marrow
locations.)
This could be related to treatment you've had or could be a
separate concern. Many of us exercise less after Dx or
become less active; that can make a situation worse....
Light swimming loosens my back and hip up considerably and
makes me more comfortable, as does heat. Ask your docs to
see if they can offer some help.
Sorry to hear you have some new aches that are giving you
challenges. Its not fun !
Laura in Livermore, CA
Auersmithpubaol.com wrote:
Thank you for all your responses. It helps to know that you
are not
alone..and that there are people who know how you are
feeling. I am now
experiencing along with exhaustion severe back pain. It's
hard to sit or bend over...I
feel like I am spending way too much time in bed. I have
called my doctor
and will be seeing my local oncologist tomorrow. My question
is, has anyone had
this and what did it end up being? It's in my lower back
and the pain is
constant..worse when I try to sit or bend over.
Thanks
Lori
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** Information - subscribe, unsubscribe, archives, etc.:
** http://www.ibcsupport
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------------------------------
Message: 9
Date: Mon, 28 Aug 2006 14:04:00 -0700
From: "JShelly"
Subject: Fw: [ibc] Sad Week
To:
Message-ID: <007a01c6cae5$7c6679d0$6600a8c0jshelly>
Content-Type: text/plain
Pete, can you help Mistysluv with her problem? Thanks in
advance!
Jean, 57, No. Calif.
----- Original Message -----
From: Mistysluvaol.com
To: vshellycomcast.net
Sent: Sunday, August 27, 2006 7:49 PM
Subject: Re: [ibc] Sad Week
thank you
any mail I send to ibcibcsupport.org is being returned to me
saying my mail is not being accepted by the host... could
you find out why for me?
[list software deleted text/html attachment]
------------------------------
Message: 10
Date: Mon, 28 Aug 2006 14:13:13 -0700
From: "JShelly"
Subject: Re: [ibc] Sad Week
To:
Message-ID: <009901c6cae6$c5ca5be0$6600a8c0jshelly>
Content-Type: text/plain; charset="iso-8859-1"
Oops, never mind...I see she sent one through recently so
whatever the
problem was, it must have already been fixed!
Jean, 57, No. Calif.
----- Original Message -----
From: "JShelly"
To:
Sent: Monday, August 28, 2006 2:04 PM
Subject: Fw: [ibc] Sad Week
> Pete, can you help Mistysluv with her problem? Thanks
in advance!
> Jean, 57, No. Calif.
> ----- Original Message -----
> From: Mistysluvaol.com
> To: vshellycomcast.net
> Sent: Sunday, August 27, 2006 7:49 PM
> Subject: Re: [ibc] Sad Week
>
>
> thank you
> any mail I send to ibcibcsupport.org is being
returned to me saying my
mail is not being accepted by the host... could you find out
why for me?
> [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: 11
Date: Mon, 28 Aug 2006 17:37:47 -0400
From: "Susan Bumgarner"
Subject: RE: [ibc] Almost time for my masectomy
To: "'Elizabeth Sommers'" ,
Message-ID: <570d8t$10hdgmamxip35a.cluster1.charter.net>
Content-Type: text/plain; charset="us-ascii"
The waiting is the worst. It seems to me that women with
"ordinary" breast
cancer who have their surgery first and then chemo seem to
deal with it
better than those of us who have to think about it for six
months before it
happens. I was much less emotional about it after the
surgery than before.
Susan
-----Original Message-----
From: ibc-bouncesibcsupport.org [mailto:ibc-bouncesibcsupport.org] On
Behalf Of Elizabeth Sommers
Sent: Monday, August 28, 2006 2:12 PM
To: ibcibcsupport.org
Subject: [ibc] Almost time for my masectomy
Dear IBC-ers--
Even though I've accepted the fact that I need to lose my
right breast to
save my life, I'm horrified that IBC has ravaged my body to
the degree it
has since June 15th. Everybody is so brave that you help me
a great deal
but I wonder if scheduling the actual surgery & then
waiting is tough for
others. I anticipate surgery in late September or early
October & will ask
for your prayers then, as I ask for your support now &
always.
=== message truncated ===
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