HonCode

Go Back   HER2 Support Group Forums > Inflammatory Breast Cancer
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 11-24-2007, 08:44 PM   #1
davidlee
Junior Member
 
Join Date: Nov 2007
Posts: 4
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.
__________________
type II diabetes mellitus
davidlee is offline   Reply With Quote
Old 11-28-2007, 05:59 PM   #2
davidlee
Junior Member
 
Join Date: Nov 2007
Posts: 4
Ooops nobody here to replay.
davidlee is offline   Reply With Quote
Old 11-28-2007, 06:46 PM   #3
Lolly
Senior Member
 
Lolly's Avatar
 
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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
__________________
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.
Lolly is offline   Reply With Quote
Old 11-29-2007, 12:10 AM   #4
sherri
Senior Member
 
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
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.
sherri is offline   Reply With Quote
Old 11-30-2007, 07:55 AM   #5
pattyz
Senior Member
 
Join Date: Mar 2006
Posts: 306
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
pattyz is offline   Reply With Quote
Old 12-02-2007, 07:23 PM   #6
davidlee
Junior Member
 
Join Date: Nov 2007
Posts: 4
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.
__________________
type II diabetes mellitus
davidlee is offline   Reply With Quote
Old 12-02-2007, 10:02 PM   #7
Aangelnxtc
Member
 
Join Date: Oct 2007
Posts: 8
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
Aangelnxtc is offline   Reply With Quote
Old 12-03-2007, 02:58 AM   #8
sarah
Senior Member
 
Join Date: Sep 2005
Location: france
Posts: 1,648
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
sarah is offline   Reply With Quote
Old 12-08-2007, 07:20 AM   #9
davidlee
Junior Member
 
Join Date: Nov 2007
Posts: 4
Thanks for your all replies.
davidlee is offline   Reply With Quote
Old 11-16-2008, 03:38 PM   #10
nix0806
Guest
 
Posts: n/a
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.
  Reply With Quote
Old 11-16-2008, 03:53 PM   #11
ElaineM
Senior Member
 
ElaineM's Avatar
 
Join Date: May 2006
Posts: 3,142
Wink Need hopeful stories of survivors of Inflamatory Breast Cancer

Count me in as a survivor. My 10th anniversary is coming up on January.
__________________
Peace,
ElaineM
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
Shared by a multiple myeloma survivor.
ElaineM is offline   Reply With Quote
Old 11-17-2008, 03:16 PM   #12
drnix
Junior Member
 
Join Date: Nov 2008
Posts: 3
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.
drnix is offline   Reply With Quote
Old 11-28-2008, 10:24 AM   #13
Believe51
Senior Member
 
Believe51's Avatar
 
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: 2,999
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
__________________
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!!
Believe51 is offline   Reply With Quote
Old 12-10-2008, 01:27 PM   #14
juliet
Junior Member
 
Join Date: Sep 2005
Location: Ridgewood, NJ.
Posts: 3
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.
juliet is offline   Reply With Quote
Old 12-10-2008, 01:37 PM   #15
Believe51
Senior Member
 
Believe51's Avatar
 
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: 2,999
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
__________________
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!!
Believe51 is offline   Reply With Quote
Old 06-27-2011, 08:35 AM   #16
Naudia
Member
 
Join Date: Jun 2011
Posts: 6
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.
Naudia is offline   Reply With Quote
Old 07-16-2011, 05:31 AM   #17
Mtngrl
Senior Member
 
Mtngrl's Avatar
 
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
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. Start 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/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
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.
4/30/13 Begin 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 get 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 chest, 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.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
Mtngrl is offline   Reply With Quote
Old 07-22-2011, 07:59 PM   #18
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
Jackie07 is offline   Reply With Quote
Old 08-17-2011, 08:27 PM   #19
gumoore
Member
 
Join Date: Oct 2006
Location: Victoria, BC - Canada
Posts: 21
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.
__________________
Gayle
_____________
Live Strong
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

gumoore is offline   Reply With Quote
Old 08-17-2011, 08:47 PM   #20
ElaineM
Senior Member
 
ElaineM's Avatar
 
Join Date: May 2006
Posts: 3,142
Wink Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?

Count me in this group. I was diagnosed in 1999.
__________________
Peace,
ElaineM
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
Shared by a multiple myeloma survivor.
ElaineM is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is On

Forum Jump


All times are GMT -7. The time now is 07:08 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter