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 09-04-2007, 11:49 AM   #1
Lani
Senior Member
 
Join Date: Mar 2006
Posts: 4,778
Exclamation The latest on Inflammatory breast cancer from MD Anderson

Oncologist. 2007;12(8):904-912.
Trends for Inflammatory Breast Cancer: Is Survival Improving?

Gonzalez-Angulo AM, Hennessy BT, Broglio K, Meric-Bernstam F, Cristofanilli M, Giordano SH, Buchholz TA, Sahin A, Singletary SE, Buzdar AU, Hortobágyi GN.
Department of Breast Medical Oncology, Unit 1354, The University of Texas M. D. Anderson Cancer Center, 1515 Holcombe Boulevard, Houston, Texas 77030-4009, USA. agonzalez@mdanderson.org.
The purpose of this study was to evaluate whether the survival of women with inflammatory breast cancer (IBC) treated at our institution has improved over the past 30 years. Three-hundred ninety-eight patients with IBC were treated between 1974 and 2005. Patient characteristics and outcomes were tabulated and compared among decades of diagnosis. Survival outcomes were estimated with the Kaplan-Meier product limit method and compared among groups with the log-rank statistic. Cox proportional hazards models were fit to determine the association between year of diagnosis and survival outcomes after adjustment for patient and disease characteristics and treatments received. The median follow-up was 5.8 years (range, 0.3-23.8 years). There were 238 recurrences and 236 deaths. The median recurrence-free survival (RFS) duration was 2.3 years and the median overall survival (OS) time was 4.2 years. In the models for RFS and OS, after adjustment for patient and disease characteristics, increasing year of diagnosis was not associated with a decrease in the risk for recurrence (hazard ratio, [HR], 1.00; 95% confidence interval [CI], 0.97-1.04) or death (HR, 0.97; 95% CI, 0.94-1.01). Our data show that there has not been an important change in the prognosis of patients with IBC in the last 30 years. Clinical trials focusing on the management of this aggressive disease are warranted. Disclosure of potential conflicts of interest is found at the end of this article.
PMID: 17766649 [PubMed - as supplied by publisher]
Lani is offline   Reply With Quote
Old 09-04-2007, 03:40 PM   #2
lexigirl
Senior Member
 
lexigirl's Avatar
 
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
Not a real uplifting post unfortunatley. Gotta keep the faith!

Lexi
lexigirl is offline   Reply With Quote
Old 09-05-2007, 12:12 PM   #3
saleboat
Senior Member
 
saleboat's Avatar
 
Join Date: Sep 2005
Location: NYC
Posts: 250
I hate this type of news. I'm hopeful that for those with Her2 IBC, the numbers look dramatically different. Lexi, this study does not apply to you!!!

I hope all those scientists are hard at work, because we need something a whole lot better than these stats.

Jen
__________________
dx 4/05 @ 34 y.o.
Stage IIIC, ER+ (90%)/PR+ (95%)/HER2+ (IHC 3+)
lumpectomy-- 2.5 cm 15+/37 nodes
(IVF in between surgery and chemo)
tx dd A/C, followed by dd Taxol & Herceptin
30 rads (or was it 35?)
Finished Herceptin on 7/24/06
Tamox
livingcured.blogspot.com

"Keep your face to the sunshine and you cannot see the shadow." -- Helen Keller
saleboat is offline   Reply With Quote
Old 09-06-2007, 08:35 PM   #4
lexigirl
Senior Member
 
lexigirl's Avatar
 
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
Amen!! I too am hopeful that the numbers will improve over the next few years. Gosh, we must be getting closer to a cure!

Hugs,
Lexi
lexigirl is offline   Reply With Quote
Old 09-08-2007, 08:00 PM   #5
MAB1943
Senior Member
 
Join Date: Jun 2007
Posts: 32
anyone out there have dcis/invasive bc and pagets of nipple invasive?
MAB1943 is offline   Reply With Quote
Old 09-12-2007, 01:20 PM   #6
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
Unhappy Owwww!!

Thanks girls for the support, I know I try not to look at the stats because they would depress me into slicing my throat (exaggerating!!). We appreciate the stats for what they are worth but know they are just that. The 'Laws of Averages' (my stats-LOL!) says that there are survivors that conquer and with that I feel "Why can it not be my stage IV husband?? Why not you??"

I do BELIEVE I shall live long enough to see a cure or close to it. Since the beginning of this journey many wonderful things have happened, one of them being the Tykerb. By the way when it made the news I had over 50 phone messages!!

We are all searching for the same things. If we keep the faith, pray for one another, be careful where we donate, support BC, make awareness....we will get to the cure.

Here is to all of you Warriors, may your faith and prayers for one another help us to find what we are all searching for. I love you all!!

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 10-21-2007, 07:11 PM   #7
darberr
Junior Member
 
Join Date: Oct 2007
Posts: 1
Find

Where did you find this article? I would like to read the entire article. Thanks!
darberr is offline   Reply With Quote
Old 10-21-2007, 11:00 PM   #8
Roz
Senior Member
 
Join Date: Oct 2005
Location: Sydney Australia
Posts: 105
the odds

Thanks to Herceptin, I am already past the av 4.2 years overall survival.Keep those miracle drugs coming!
__________________
diagnosed June 03. Rt sided Inflammatory BC in rt lower quadrant. 7cm tumour. Also 3 DCIS. 3 rounds of EC, mastectomy with axillary clearance (12 nodes+ of 19). 1 more EC. 5 weeks of rads, with weekly booster to attack skin lymph involvement. 4 cycles of Taxol. Tamoxifen.Recurrence December 04, Herceptin started early Jan05,+ Arimidex.
NED 26 mths. Recurrence early Mar07. Taxol added to Herceptin. NED. Will have total of 6 cycles, then Aromisan and Herceptin. Early Oct 07, recurrence to the pesky right upper lobe, with some pleural thickening upper rt hemithorax. T/X now the treatment. May 2008, Taxatere and Herceptin for lung recurrence
Roz is offline   Reply With Quote
Old 10-22-2007, 05:29 PM   #9
Gina
Senior Member
 
Join Date: Oct 2005
Location: Alexandria, VA
Posts: 197
This article just underscores that we are still working from the WRONG IBC model

I promise not to jump on my soap box, but reading this article just underscores to me that we are not treating the disease properly and that is why there has been really no improvement in survival...I think the same is true of most cancer. In any other venue, besides cancer research, if you had a model that failed between 85 and 90 per cent of the time, it is not the patients you would throw out with the bath water, but the model...in a corporate environment, if you were working on say a marketing plan that failed 85 per cent of the time to get the word out and if your boss was Donald Trump, YOU KNOW YOU WOULD BE SO "FIRED" that it wouldn't be funny and it wouldn't take 30 years.

I think it is just awful that they always blame the ever elusive "cancer" for the cause of so many deaths and never dare question if the model from which they work is correct or not. Also, I never get why oncologists can give the same treatment combo again and again and watch the patients die and die every time and never question their treatment, or even think to try something different next time.

Basically, a lot of you who know me from the past know that I do not support the traditional model for her-2 mediated disease and espouse rather an infection based root of this disease. Although not published, I have binders of evidence to support some sort of bacterial root to this horrible illness, but no one wants to talk cause anymore...just "cure, cure, cure," and here I am, against all odds, still living 10 years out, and there is still no cure. I think Science with a capital S has let us all down, with the exception of the invention of herceptin. If you have IBC that has a her-2 component, you should do everything you can to keep your immune system working. Many of you at first know that you were diagnosed with a breast infection...but when traditional anti-biotics failed on you, the doctors, immediately jumped to the C-word and your life has never been the same. Maybe instead of taking the easy way out, they should have continued to look harder at what was really going on...there are many bacteria that can not be cultured, and many others that barely leave the slightest trace of their undoing, but they are there, nevertheless, if only we would look for them...but once the C-word hits, no further investigation is made and the rest, well, is not good.

Best advice, as much as possible, take herceptin if you are eligible and fight your illness as you would a horrible infection...let's change the model and the improved outcomes will take care of themselves.

Genuinely concerned,
Gina
Gina is offline   Reply With Quote
Old 10-22-2007, 07:52 PM   #10
lexigirl
Senior Member
 
lexigirl's Avatar
 
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
Gina,

Thank you for speaking out about this.

I may be a little off base with what you were getting at with there being a connection between bc and bacterial infection, but here are my thoughts. Since my diagnosis I truly had wondered if some kind of infection or virus could have caused my bc. About three years prior to my diagnosis, I was fighting off sinus infections. Same time every year. I'd get antibiotics and go on my way. The year prior to my bc diagnosis I was diagnosed with a strep virus. Mind you, I grew up never having any illnesses other than the chicken pox and I got the flu at about nine years old. Otherwise I was literally one of the healthiest people I knew! My thyroid went cooky on me about three years prior to my diagnosis as well. It all just seemed to come on pretty quickly.

My bs is currently working on finding a vaccine to stop this disease before it ever can infect anyone. I do pray very hard that this happens. I have a little girl that I worry for. All of our kids.

Hugs and Prayers,
Lexi
lexigirl is offline   Reply With Quote
Old 10-23-2007, 08:22 AM   #11
Gina
Senior Member
 
Join Date: Oct 2005
Location: Alexandria, VA
Posts: 197
Lexi, you are RIGHT on TARGET

Hi, Lexi,

I agree with everything you said. I personally don't have IBC, but I have known a lot of girls from this site and in real life who have had it and almost all of them told me that in the begining, it was like some sort of infection...almost all of them were just like you and me...very healthy...hardly ever got any viral illnesses...I was like you too...I had chicken pox and I caught that really bad HONG KONG FLU that hit, I think, in the late 60's or early '70's...I was younger than nine and can't remember all the details, but I will never forget that flu. My whole family got it and we all piled up on the couch, looking wretched and I remember how my poor mother somehow kept going, sick herself but taking care of us all...

Thanks for your comments,
Gina
Gina is offline   Reply With Quote
Old 12-02-2007, 06:32 PM   #12
vickie h
Senior Member
 
vickie h's Avatar
 
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
IBC on the rise?

I have IBC, er-pr- her2+++ Stage 3c and was diagnosed almost 4 years ago (Feb 10th will be my anniversary). I was given a very poor prognosis and assumed I had maybe 2 years. Stats are just the, STATS. They never take into account all the factors in our lives. For those of you out there with IBC, hold on tightly, things are changing, and I beleive your chances are better than those stats. My cancer has not metastizied to date and I have been on Tykerb/ Xeloda since March. That could all change soon, but there are many more options. Have faith, pray alot, and be so very grateful for every sunset and sunrise, for the love of those around you. I will be praying for you....hang in there and don't let go.......Love, Vickie
__________________
Love and Hugs, Vickie

Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.


Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
vickie h is offline   Reply With Quote
Old 12-03-2007, 06:30 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
Smile Thank You Vickie...

Although he has stage IV that post holds true for many things AND stats are stats!! Thank you so much for the words that ring in my ears as we try to live and breathe them each day. Many thanks from hubby and I.>>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 12-10-2007, 03:00 PM   #14
Joanne S
Senior Member
 
Joanne S's Avatar
 
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
Smile full text - Trends for inflammatory breast cancer: is survival improving?

RE: Trends for inflammatory breast cancer: is survival improving?

darbarr,

Hi, I'm not sure if you ever got a response to your post.

Just in case, I found the link for the full text for PMID 17766649 today.

http://theoncologist.alphamedpress.org/cgi/content/abstract/12/8/904
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



Joanne S is offline   Reply With Quote
Old 12-14-2007, 07:16 AM   #15
sarah
Senior Member
 
Join Date: Sep 2005
Location: france
Posts: 1,648
lani.
i don't see any explanation between those who died and those who survived. did i miss something?
sarah
sarah 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 06:41 PM.


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