HER2 Support Group Forums

HER2 Support Group Forums (https://her2support.org/vbulletin/index.php)
-   Inflammatory Breast Cancer (https://her2support.org/vbulletin/forumdisplay.php?f=42)
-   -   ibc triple neg...eeeek newbie (https://her2support.org/vbulletin/showthread.php?t=55704)

liv 08-31-2012 09:19 PM

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. http://www.bcaus.org.au/phpBB3/images/smilies/hug2.gif

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

liv

Jackie07 09-01-2012 03:25 PM

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!

sdstarfish 09-06-2012 06:00 AM

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!

liv 09-06-2012 07:19 AM

Re: ibc triple neg...eeeek newbie
 
sdstarfish

thanks for the warm welcome.

fantastic to see your NED status.

x

MJsHusband 09-06-2012 07:24 AM

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

liv 09-06-2012 05:07 PM

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.

liv 09-06-2012 05:10 PM

Re: ibc triple neg...eeeek newbie
 
Jackie0

thanks for the heads up!!

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

big cuddles to u

x

Midwest Alice 09-16-2012 03:54 PM

Re: ibc triple neg...eeeek newbie
 
Hi Liv, i am a IBCer ... its bad but your body can heal. Im 4 years out

liv 09-16-2012 08:59 PM

Re: ibc triple neg...eeeek newbie
 
hi alice

great to hear 4 years and doing well.

thanks gives me faith.

x

liv 10-08-2012 10:01 AM

Re: ibc triple neg...eeeek newbie
 
hi ladies http://www.bcaus.org.au/phpBB3/images/smilies/hug2.gif

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.. http://www.bcaus.org.au/phpBB3/images/smilies/nouch.gif

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 http://www.bcaus.org.au/phpBB3/image...es/00winky.gif

x

_________________
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
__________________

Jackie07 10-11-2012 02:33 PM

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.

Mandamoo 10-11-2012 03:14 PM

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.


All times are GMT -7. The time now is 07:21 AM.

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