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11-05-2008, 11:04 AM
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#1
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 3,000
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~Inflammatory Breast Cancer~Re: Rash
Major questions are:
~Did your rash ever come back? Ed's never came back, nor mets to ribcage/chest cavity
~Where were mets located? *All Bones-especially Spine
*Brain (3 seperate times-WBR, Gamma Knife)
Just curious my dears>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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11-05-2008, 02:34 PM
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#2
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Hi Marie,
I had a small pimple just above the lump in my breast. After my mast., it had spread into a small rash. I noticed a response to tx after about my third A/C. Once I started the herceptin it disappeared. They also radiated the heck on that area. I check every day. So far so good!
HUgs,
Lexi
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11-05-2008, 02:39 PM
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#3
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 3,000
|
Hey Friend
Ed did not have any radiation to this area with no return of the rash. Guess I can say the same...So Far So Good.....Yeah to us. Thanks for the reply Lexi, I am interested in the responses I may get with this post. Love and hugs>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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11-05-2008, 03:06 PM
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#4
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Senior Member
Join Date: Mar 2006
Posts: 306
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Marie,
Since I went to Mexico for my dx and tx's, things were done a bit differently. ie: surgery first, then chemo. Just A/C 4 rnds.
I never had rads to my chest area after MRM. My choice the only reason.
My Inflammatory only showed as the orange peel type. From lower third of nipple area, to whole underside of breast. (C-cup) I also had two tumors. One visable, both inner quads, top and bottom. 6pos nodes of 26.
I've never had any type of Inflammatory recur since MRM Jan. 2000.
July 2002: Mets to mediastinal node/s (one partially biopsied) w/ 'spot' on pelvis and lung. Nothing ever came of those.
Sept. 2002: Mets to brain. and you know the rest there, I think. 18 tx'd with rads, all focalized. Current six lesions for 39 mos. on Xeloda/Temodar. W/Tykerb added last year.
too much info??? or what you wanted?
best to you both,
pattyz
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11-05-2008, 03:12 PM
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#5
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Senior Member
Join Date: Nov 2004
Posts: 190
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Hey Marie,
After my initial dx, I presented with skin mets outside the rad field. This was different from the rash that I initially presented with. I also presented with a met to the sternum and a met to my opposite reconstructed breast.
__________________
8/98 dx right breast
5/2003 tram flap right breast
8/2004 dx new primary left breast with inflammatory bc
er/pr-, her2neu+++
8/19 taxotere and herceptin
1/15/2005 Navelbine/Herceptin
4/2005 radiation and Herceptin
5/15/2005 Herceptin alone
2/12/2008 skin biopsy positive
2/14/2008 met to sternum, possibly right breast
2/27/08 Start omitarg, herceptin, taxotere trial
3/17/08 Kicked off trial because I started too close to my last herceptin
3/19 start tykerb xeloda
Right breast confirmed met
5/15/08 skin mets gone, no hypermetabolic activity in breast, sternum healing
8/24/08 scans still look good. sternum still active with scarring. No evidence of progression
10/08 Progression in sternum
12/08 Start TDM1 trial
1/09 Scans show stable
12/09 1 year on TDM1 still stable
10/10 progression in chest and liver
11/10 false positive of liver mets; tykerb and herceptin
4/11 Tykerb/Herceptin/Xgeva
4/11 Rads to Sternum
5/12/12 NED Herceptin/Zometa
3/16/19 still NED Herceptin/Zometa very 6months
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11-06-2008, 06:17 AM
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#6
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 3,000
|
Pattyz
Exactly what I wanted, babe. You are one tough warrior who oozes courage and feist. Thanks>>Believe51
PS: Let us all break the rules!!
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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11-06-2008, 06:21 AM
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#7
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 3,000
|
Kim
Had to comment on that picture. It is beautiful and helps me to put a face to the journey. Lots of love always>>Believe51
PS: It also makes me realize that I need to get my act together to post mine soon too.
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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11-06-2008, 07:24 AM
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#8
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Senior Member
Join Date: Mar 2006
Posts: 306
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Marie,
oh good 
I do know that sometimes I get a 'bit' wordy ie: diarrhea of the mouth!
Since the 'stats' @ the five yr mark for Inflammatory are not nice...
Nor the 'stats' for brain mets at all...
add in a bit of Her2+++...
And I am just one freaking lucky "DOB" being just shy of nine years out from the get go and six w/brain mets. I believe this is so.
Ok, I'm a little of an info junky and 'control freak' in days of old. But I do not believe being a 'warrior' has had anything to do with my informed dumb luck. My apologies to those who ARE warriors.
May we all be blessed with similar LUCK!!!
(it sure doesn't hurt).
xoxopatty
p.s. "DOB" = the feminine of "SOB" |
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11-06-2008, 11:56 AM
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#9
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Gee Pattyz - I thought it meant Date of Birth ...
Dumb luck or whatever kind of luck - we will take it, eh?
Regarding the "rash" question.
I know that SandyH's rash returned. That is why she had to get the Miltex from Germany as the usual drugs did not work and this cream did work.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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11-06-2008, 09:42 PM
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#10
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Senior Member
Join Date: Apr 2006
Posts: 131
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My "rash" (bc mets) has jumped back on me again... I had 34 rad treatments, was taking tykerb...My entire chest cleared up, and now it is back.... not as large of an area as before..... the Dr. has me on 5fu cream, which I am putting on the mets... they are coming back in the radiated areas... it seems to have "stalled" them for a while...so I guess the 5fu is doing some good very slow ..(as I said before.... its doing its thing.. I guess I am impatient, am tired of looking at them.. my onc. nurse told me not to look at them..very depressing. I came back with.... How can I take a shower without looking at them??
This may sound crazy, but it is hitting me harder this go around with this.... I guess it is just looking at them on a day to day basis.. before the ca was in my breasts, it bothered me,maybe because they were under the skin? but not as much as this is... maybe its because i have to look at them?
I would like to thank all of you folks, for any comments, advice etc.
I do not wish to discourage anyone from any treatments.. if you think it is the road for you, then take it..please do some research before making a decision
my 2 sisters are trying to get me to tell mama her condition...the Dr. is a friend of the family, and wants us to tell mama..
I told my sisters, no, no, no , I will not do that.... they are going to have to get the Dr. to do that...
I should have a few more answers after Monday...
this is so good to have a place to go for encouragement..love, and hopes that we all can beat this beast, once and for all.
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11-07-2008, 07:48 AM
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#11
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Senior Member
Join Date: Mar 2006
Posts: 306
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Steph...
I just don't want to use the "SOL" any time soon. Perhaps, for me, it would be "SODL"?
When something makes no sense, my usual is to try to MAKE sense. In whatever way I can. In this area, dumb luck works for me.
In many other cases it helps me greatly to hear my friends' words on the subject:
"Don't try to make sense of nonsense, as it will make you crazy."
pattyz
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