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Old 08-31-2012, 09:19 PM   #1
liv
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ibc triple neg...eeeek newbie

hello im from australia and as there's not many forums with ibc so here i am.

my journey up to now had implants silicone tear drops put in overseas january 2012 malaysia..

hard lump appeared feb 2012, off to gp, put on antibiotics, 1 month still lump, sent for fna,
they wouldnt do it as breast like a red hot balloon and too swollen with pitted orange outer skin.
back to gp, more antibiotics & sent for ultrasound, results large hemoglobin, told no bc, again more antibiotics.
not clearing huge red pitted balloon breast now referred to specialist at mount, surprise surprise...told>> severe infection.
another dose of antibiotics, months of antibiotics back to my gp who admitted me to rph that night cos it was about to burst.

on admission to rph, the specialist had a look, diagnosed >>severe infection from implant...
sent me down for ultrasound and same time booked me to go under the next day to have a look at infection and if really bad he would take implant out..I thought no probs can put another implant in later stage.

later that day they finally decide to take biopsy fna...breast dr returns.. oh bad news.. got results from the biopsy, its not an infection u have ibc and its triple neg...blah blah blah.

anyways thats why im here with all u luvlies.

finished chemo, mastectomy booked 18th september, then 7weeks of rads.
is treatment in the same order here?

liv

Last edited by liv; 08-31-2012 at 09:26 PM.. Reason: spelling
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Old 09-01-2012, 03:25 PM   #2
Jackie07
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Re: ibc triple neg...eeeek newbie

Liv,

You might find some information about triple negative breast cancer by using the 'Search' button on top of the Board.

Below is a link to the the Triple Negative Breast Cancer Foundation:

http://www.tnbcfoundation.org/

Ask any questions, we are all here for each other!
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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
Cntrl Neurocytoma 4x5x6.5 cm Craniotomy 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infert. tmts 99 > 3 uterine fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmpctmy SLNB+1 71703 6 FEC 33 R Tmxfn
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - cmprssn slv & glv
H w x 4 MUGA 51 D, J 49 M
Diastasis recti (Yoga)
Tmxfn Bone scan
Irritable bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hepatic hemangioma
Vertigo
GI - > yogurt
hyst/oo 011410
Exemestane 25 mg tab 102912
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"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

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Old 09-06-2012, 06:00 AM   #3
sdstarfish
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Re: ibc triple neg...eeeek newbie

Hi, Liv:
First off, just wanted to give you some moral support. So sorry you are having to deal with this info.
AS to your question, yes - that is the same order that many friends of mine have received treatment for triple neg.

I wish you the best!
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Old 09-06-2012, 07:19 AM   #4
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Re: ibc triple neg...eeeek newbie

sdstarfish

thanks for the warm welcome.

fantastic to see your NED status.

x
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much luv
Liv


dx Apr 2012 Inflammatory Breast Cancer 10cm - Trip Neg.
Adriamycin Doxorubicin (aka red devil) Docetaxel Taxotere/Cyclophosphamide.
6 Chemo finish 13th Aug 2012.. Mastectomy booked 18th Sept 2012.. then 7 x rads?.. then reconstruction?
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Old 09-06-2012, 07:24 AM   #5
MJsHusband
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Re: ibc triple neg...eeeek newbie

MJ had the same symptoms and they first tried to treat it as an infection, giving her antibiotics. It later turned out to actually be inflammatory breast cancer. There seems to be a need to better train doctors to know the difference between the two conditions. It looks like you are getting treatment in the same order as MJ. Chemo, then mastectomy and then radiation. The only real difference is MJ is Her2+ so she was also given Herceptin. Wishing you the best. ~Greg
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08/10 ~ Dx IBC, Her2+++ ER-/PR- Stage 4, mets to liver. Age 43.
08/10 ~ Began 12 weeks of Taxetere/Carboplatin/Herceptin tx
[10/10 ~ Scans show liver lesions are gone. NED!
11/10 ~ Ended chemo. Herceptin-only tx
01/11 ~ Mastectomy
03/11 ~ Radiation
07/11 ~ Reconstructive surgery
10/11 ~ PET/CT shows NED :)
01/12 ~ Malignant tumors found in uterus, cervix, fallopian tubes and lymph nodes. Dx as endometrial cancer. Stage III2c
02/12 ~Hysterectomy(all tumors removed). Back to NED.
02/12 ~ Final Herceptin treatment.
03/12 ~ Began Cisplatin/Adriamycin tx for endometrial cancer.
03/12 ~ Tumors dx her2 metastisis, not entdometrial cancer. Back to BC tx.
03/12 ~ CT scan shows NED. :)
04/12/~ Began Tykerb/Xeloda.
06/12 ~ Ended Xeloda. Continuing Tykerb. Still NED.
09/12 ~ PET/CT scans show NED. : )
04/13 ~ Rash on original breast biopsied as cancer.
05/13 ~ Surgery to remove skin and tissue around rash. Continue Tykerb.
06/13 ~ PET/CT scans show NED : )
11/13 ~ Jaundice eyes and skin. CT scan show mets to liver as well as peritoneal carcinomatosis with malignant ascites. Began Abraxane/Herceptin tx.
02/14 ~ CT scan shows NED. :)

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Old 09-06-2012, 05:07 PM   #6
liv
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Re: ibc triple neg...eeeek newbie

MJsHusband

thanks for the lovely hello.

yep its still shocks me even my oncologist had not seen it an actual breast with ibc..scary to say the least!

you guys keep on keeping NED..makes me smile.
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much luv
Liv


dx Apr 2012 Inflammatory Breast Cancer 10cm - Trip Neg.
Adriamycin Doxorubicin (aka red devil) Docetaxel Taxotere/Cyclophosphamide.
6 Chemo finish 13th Aug 2012.. Mastectomy booked 18th Sept 2012.. then 7 x rads?.. then reconstruction?
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Old 09-06-2012, 05:10 PM   #7
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Re: ibc triple neg...eeeek newbie

Jackie0

thanks for the heads up!!

have joined the
http://www.tnbcfoundation.org/

big cuddles to u

x
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much luv
Liv


dx Apr 2012 Inflammatory Breast Cancer 10cm - Trip Neg.
Adriamycin Doxorubicin (aka red devil) Docetaxel Taxotere/Cyclophosphamide.
6 Chemo finish 13th Aug 2012.. Mastectomy booked 18th Sept 2012.. then 7 x rads?.. then reconstruction?
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Old 09-16-2012, 03:54 PM   #8
Midwest Alice
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Re: ibc triple neg...eeeek newbie

Hi Liv, i am a IBCer ... its bad but your body can heal. Im 4 years out
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04/08 age 50 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 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
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Old 09-16-2012, 08:59 PM   #9
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Re: ibc triple neg...eeeek newbie

hi alice

great to hear 4 years and doing well.

thanks gives me faith.

x
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much luv
Liv


dx Apr 2012 Inflammatory Breast Cancer 10cm - Trip Neg.
Adriamycin Doxorubicin (aka red devil) Docetaxel Taxotere/Cyclophosphamide.
6 Chemo finish 13th Aug 2012.. Mastectomy booked 18th Sept 2012.. then 7 x rads?.. then reconstruction?
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Old 10-08-2012, 10:01 AM   #10
liv
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Re: ibc triple neg...eeeek newbie

hi ladies

what would you do?

ive sacked my oncologist and have an appointment with new onc 18th October. i want more chemo & fingers crossed he will give it to me... i know most will say no to more chemo, save it for when you really need it, that being when it mets, highly likely, ibc trip neg 18/24 nodes - 13cm, not responding to chemo..

why i changed onc is on my 5th treatment of chemo i knew that the cancer wasn't responding, one of the first symptoms of ibc is burning, itchy red inflammation, knew it had came back, it was again on the surface the breast next to the nipple & had all the symptoms, it was coming back full steam.
then 2 days after the 5th dose of chemo i mentioned that i thought it was coming back to the onc,
she just looked at me with that.... WTF are you talking about? right then i was convinced that in australia ibc is treated completely different here US, having such a poor prognosis, the US treat it much more aggressively.

when i was first diagnosed it was 10cm, after mastectomy the path report showed 13cm, so it grew 3cm in 2 months, i know this because i had just had a scans done prior to 5th dose and it showed that nodes were shrinking and all was looking ok, the tumor had obviously only grown during the last 2 doses... it had become chemo resistant...not good- trip neg...and this so called onc looked at me like i was an idiot.

would you demand more chemo even tho in australia they don't like to give more chemo after all traditional treatments have been exhausted..my onc.... said NO! - NO WAY!
..remembering this is trip neg cant have anything else except chemo?

mastectomy 13/09/2012
pathology report reads...
lymphovascular invasion - abundant
perineural invasion - abundant
apical node involvement - abundant
ibc trip neg 13cm
grade 3 stage 3c

and if one sort of chemo doesn't respond shouldn't they have known and switched chemos?

i'm cool, as cool as one can be with cancer, what i do know is... i want to give it my best shot whilst im relatively healthy and what i don't want is to have to beg or convince professional people, (those people hold the cards to my life)....just want them to fight with me,
not against...was again feeling despair & even more frustration, the feeling i had when it took all these professional people 4 months of prescribing antibiotics before being diagnosed with ibc, and in that time it spread to my nodes..they just dont get it!

what do u reckon?

treatment so far
chemo, mastect with full node - rads in next couple of weeks..


just frustrated

x

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much luv
Liv


dx Apr 2012 Inflammatory Breast Cancer 10cm - Trip Neg.
Adriamycin Doxorubicin (aka red devil) Docetaxel Taxotere/Cyclophosphamide.
6 Chemo finish 13th Aug 2012.. Mastectomy & Node clearance 13/09/2012...17/24 nodes positive.
Rads 5x7 weeks soon
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much luv
Liv


dx Apr 2012 Inflammatory Breast Cancer 10cm - Trip Neg.
Adriamycin Doxorubicin (aka red devil) Docetaxel Taxotere/Cyclophosphamide.
6 Chemo finish 13th Aug 2012.. Mastectomy booked 18th Sept 2012.. then 7 x rads?.. then reconstruction?
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Old 10-11-2012, 02:33 PM   #11
Jackie07
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Re: ibc triple neg...eeeek newbie

Liv,

Thought I'd posted one recent abstract that mentioned something effective in treating Triple Negagive Breast Cancer. It was an article summarizing breakthroughs in breast cancer treatment, and TNC was mentioned/included in the report.

Here's an abstract from 2010 and looks like PARP inhibitor is a good bet.


Gan To Kagaku Ryoho. 2010 Jul;37(7):1187-91.
[Breakthrough breast cancer treatment--PARP inhibitor, BRCA, and triple negative breast cancer].

[Article in Japanese]
Hashimoto K, Tamura K.
Source

Breast and Medical Oncology Division, Outpatient Clinic, National Cancer Center Hospital, Tokyo, Japan.

Abstract

PARP and BRCA are both known as DNA repair enzymes. Functional loss of BRCA cell with PARP inhibition indicates apoptosis. Triple negative breast(TNB)cancer(estrogen receptor-negative, progesterone receptor-negative, HER-2 expression negative)are well associated with basal-type breast cancer. Basal-type breast cancer often has loss of BRCA and showed poor clinical outcomes. Considering the similar molecular profiles of Basal-type breast cancer and TNB cancer, clinical trials using PARP inhibitor for patients with TNB cancer has been warranted. A randomized phase II trial comparing gemcitabine and carboplatin(GC)to GC plus BSI-201(PARP inhibitor)in patients with metastatic TNB cancer showed significantly longer progression-free survival and overall survival. We herein summarized up-to-date knowledge of PARP inhibitor in association with TNB and BRCA.
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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
Cntrl Neurocytoma 4x5x6.5 cm Craniotomy 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infert. tmts 99 > 3 uterine fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmpctmy SLNB+1 71703 6 FEC 33 R Tmxfn
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - cmprssn slv & glv
H w x 4 MUGA 51 D, J 49 M
Diastasis recti (Yoga)
Tmxfn Bone scan
Irritable bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hepatic hemangioma
Vertigo
GI - > yogurt
hyst/oo 011410
Exemestane 25 mg tab 102912
DEXA 1/13

"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
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Old 10-11-2012, 03:14 PM   #12
Mandamoo
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Re: ibc triple neg...eeeek newbie

Hi Liv - where in Australia are you? There are not many parp trials running as far as I know but there is one using tamoxifen in TNBC - not sure if it is for inflammatory though.
Have you been on the BCNA website and linked with the TNBC girls there?
We also have a very active FB group for young women - mostly Australian girls.
Feel free to PM me.
Second opinion is good. The trouble in Australia with demanding more chemo is the government PBS will not fund you if you have already had the prescribed course. I know you are fearful - perhaps you can focus on the other things that you can do in your life to help manage the disease and hopefully help prevent recurrence - lifestyle, exercise, living fully.
Would love to help with some local resources if I can.
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40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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Old 04-26-2014, 04:58 PM
LizzElliot
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