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Old 11-24-2007, 08:44 PM   #1
davidlee
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Need hopeful stories of survivors of Inflammatory Breast Cancer?

My dear friend has it. I am just sick about it. One thing I could sure use right now is stories of people who have survived it. THis cancer is not the usual breast cancer. It ismuch more dangerous. SO stories about IBC only, Thanks in advance.
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Old 11-28-2007, 05:59 PM   #2
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Ooops nobody here to replay.
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Old 11-28-2007, 06:46 PM   #3
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Hi davidlee;

I have a friend who's had Her2+ Inflammatory BC since 2001, and she's been able to keep it under control with a combo of maintenance Herceptin plus various chemo's. Her latest chemo cocktail is Herceptin plus Navelbine, but in the past she's had Taxol, Taxotere, Abraxane, Gemzar and Tykerb and Xeloda. Usually our onc just has her on one chemo plus Herceptin, but with Tykerb he also had her take the daily Xeloda.
She's been able to take occasional short "breaks" of a couple of weeks, it she needs to travel or just rest up from side effects.
She's done very well so far, and has good quality of life. Able to drive and take care of her husband.

I hope this gives you and your friend some hope.

<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 11-29-2007, 12:10 AM   #4
sherri
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Hi Davidlee,

My dx was December 2004 with very aggressive IBC, I had dose dense ACT every 2 weeks for 3 month, then surgery and 25X radiation. Druing radiation I stared Herceptin for 1 year. I'm doing very well so far and hope to continue. Do you have the lab report of your freind? Most IBCs are HER2+ and with Herceptin the survival rate has increased. Please let me know if you have any question.
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Old 11-30-2007, 07:55 AM   #5
pattyz
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Maybe you've read through the list by now, David.

If you're still looking for an 'encouraging' word:

I was dx'd with Inflammatory bc Jan. 2000. Coming up on eight yrs.

Inflammatory and Invasive. Two tumors in breast, 3.8cm / 1.9cm, 6+nodes of 26 taken. "Orange peel" effecting entire bottom half of breast up into nipple area.

Mets dx mid 2002. ER+ PR-Her2+++.

Navelbine/Herceptin for body mets successful, to this day.

Brain mets Sept. 2002. I've had two recurrances. A total of atleast 24 lesions, 16 treated successfully with focalized radiation sessions, no WBR. Living with active brain mets for just over two yrs. Treating with Xeloda/Temodar and now Tykerb.

No typos here, I dble checked!

I'm sure you don't like to hear about the mets diagnosis, but... I'm past that 'five yr' IBC survivor date by nearly three years... pass that on to your friend, please.

pattyz
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Old 12-02-2007, 07:23 PM   #6
davidlee
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Prayer for her and prayer for me to be able to deal with it and for me to be the best friend to her that I can be are the best things I could ask of anyone.
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Old 12-02-2007, 10:02 PM   #7
Aangelnxtc
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David, all i can say is what ever method of chemo they are giving her.
TEll her to make sure they are treating her brain/spine/cns also.
For some stupid reason they werent doing mine now i have brain mets (several) and moving thru CNS. So not good. Also ANY complaints like ie shakey hand, blurred vision, dizzness etccccc Tell her to demand a brain and spine scan. CAUSE ITS NOT IN THERE PROTOCOL. MMMMMMMM

Sorry sounding neg but she gotta stay on top. I slipped I trusted I was being takening care of. Someone forgot to put brain in the protection bracket.

I have 2 less breast, 15 less nodes but hey I have mmmmmm approx 9 tumors and cancer of the C N S.

SO IM PRAYING LIKE HELL FOR A CURE dxed 4/2/07 IBC dxed 11/29/07 OF BRAIN METS


ANGELA KEEP ON KEEPING ON
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Old 12-03-2007, 02:58 AM   #8
sarah
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Sorry Angela you are having these problems.
I have a friend with IBC HER2 and wanted to know what you meant by " TEll her to make sure they are treating her brain/spine/cns also." what is the treatment? medicine or just tests?
thanks and win your battle.
hugs and love sarah
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Old 12-08-2007, 07:20 AM   #9
davidlee
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Thanks for your all replies.
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Old 11-16-2008, 03:38 PM   #10
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Response to IBC Survivors

I just wanted to let anyone with inflammatory breast cancer that I am still her - diagnosed fall 2003. Yes, numerous treatments from recurrences, but still going. New treatments are coming all the time. It's time to hang on and pray.
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Old 11-16-2008, 03:53 PM   #11
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Wink Need hopeful stories of survivors of Inflamatory Breast Cancer

Count me in as a survivor. My 10th anniversary is coming up on January.
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Old 11-17-2008, 03:16 PM   #12
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I'm still trying out how to work this site - so bear with me again. I posted a wrong date for diagnosis - said I was diax in 2003, when in fact it was 1993. I just want everyone to know there's hope. Stay in the game and continue to pray.
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Old 11-28-2008, 10:24 AM   #13
Believe51
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Hey David

Just look at my Sweet Husband's bio below, although he has had much happen since 2006, he is still here fighting. There was not much time in the beginning....6 months, 9 maximum. It is 27 months David and he is not done yet!!!

Sending special prayers for your friend to be inspired and to gather the strength to be the next one sending out a hopeful story. I know women who have beat IBC for 8-10 years. In the meantime new and exciting things happen in the breast cancer world. Best to you both!!>>Believe51
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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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Old 12-10-2008, 01:27 PM   #14
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Wink IBC Long Term Survivor

I am replying to david lee who wants hopeful stories of IBC. It will be 7 years from my diagnosis in another 2 weeks (December, 2001). I am cancer free! I had 3 chemos, radiation, Herceptin (on a trial back then, as it was only used for metastatic breat cancer). I had spread to the nodes (as I think we all have) and to my rib on the same side. So, I was technically stage 4, but my doctor listed my at 3C or I never would have gotten on the trial.
Yes, there are some of us whose cancer reacts well to the treatments. I was on tamoxifen for 2 years, now on Aromasin (an aromatase inhibitor) for five years (I have one year left). I feel great and am as active as I want to be.
Please feel free to write to me.
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Old 12-10-2008, 01:37 PM   #15
Believe51
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Thumbs up Juliet

Thanks for posting for David and all of us in general. Although hubby is still hanging in there his journey is tough and rather complicated. We too are in need of hearing inspiration like this. You go girl!!!!>>Believe51
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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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Old 06-27-2011, 08:35 AM   #16
Naudia
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Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?

A friend of mine was recently diagnosed with inflammatory breast cancer. I am really proud of her since despite the seemingly grim outlook, she shows no fear and seems to be pretty confident that she will overcome it. It is her unshakable faith in God which keeps her going every day. She is a truly great person and I find her strength to be very inspiring. I was wondering if anyone has any experience with www.thomasmedical.com? What can you tell me about them? Thanks.
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Old 07-16-2011, 05:31 AM   #17
Mtngrl
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Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?

One of the women in my breast cancer support group was diagnosed with inflammatory breast cancer 11 years ago, and was metastatic at diagnosis. She still has cancer, but her scans are stable, and she's still alive and kickin'. She is an inspiration to us all.
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4/19/11 Diagnosed invasive ductal carcinoma; 2.3 cm tumor, 1 axillary lymph node
HER-2+++, weakly ER+ (10%)
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--
Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest (mediastinal lymph nodes)/spine (one vertebra)
5/22/12 Stopped taking Arimidex; stay on Herceptin
6/5/12 CT scan
shows everything stable
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
8/1/12 CT scan--stable.
9/24/12 CT scan--No new mets. Everything stable.
11/19/12-Stable CT scan
12/13/12 CT Scan--NED

3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed (but it says cancer cells are "scant").
4/30/13 Began Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally got hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in lung, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better, though.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avidity, original tumor more avid, one lymph node in mediastinum is more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will stay on Herceptin and Perjeta every three weeks.
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Old 07-22-2011, 07:59 PM   #18
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Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?

Happened to see in the signature of MidwestAlice today that she's a survivor of IBC:


04/08 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement
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Old 08-17-2011, 08:27 PM   #19
gumoore
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Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?

I was diagnosed 5 years ago, and I'm 51 months since surgery. I feel like a junior here compared to others, but it goes to show that we do and are surviving.

Stay strong.
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IBC dx August 9/06
ER/PR +2

HER2/neu +

chemo August 11/06 - January 8/07

herceptin - 17 treatments, every 3 wks - end Jan 2008

IMRT rads 5 weeks

surgery May 1/07 bilateral mastectomy (left modified radical, right simple)
prophylactic bilateral salpingo-oophorectomy March 2008
letrozole, 2.5 mg daily, start June 2008
lymphedema, left arm, April 2008
osteoporosis, lower spine, August 2010 - fosamax 70 mg

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Old 08-17-2011, 08:47 PM   #20
ElaineM
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Wink Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?

Count me in this group. I was diagnosed in 1999.
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12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
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