any other aussie's? |
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AnnMF 
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Joined: Nov 23 2011 Location: Dalby,Australia Status: Offline Points: 8 |
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 Topic: any other aussie's?Posted: Nov 25 2011 at 10:01pm |
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hi
just wondering if there are many other aussie members? Would be interested in comparing notes on our treatments, private V public, stuff that is availalbe, and looking at any differences/ideas that the members from overseas are getting or doing. Would love to also spread the word about this site, will need to talk to someone? about that. I only found this site by lots of googling. If it was acknowledged/linked by our cancer association, BCNA it would make things so much easier, take the stress out of information gathering. Yes there may be differences eg some of the drugs, but the wealth of info, hints tip etc here is amazing. I have just checked, there is now a small forum/blog on Triple negative on the website BCNA, started by someone expressing concerns on the lack of info on this type BC in Oz. Is it okay to point them in this direction, use a link?
I certainly wished that i had found this site early in my treatment, would 've made things easier to understand/comprehend.
Any ideas and your thoughts greatly appreciated.
Cheers Ann
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DX 14/12/10 TNBC Invasive ductcarcinoma,Stg 2B,gr3, Tumour 22mm+8mm to 4x satellite nodes,lumpectomy 6/1/11-axilla 1.8cm, 3+/16 nodes, chemo FECx 3 and docetaxelx 3, rad x30 end 19/9/11.
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Nov 26 2011 at 12:07am |
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Ann,
Yes, please share this site with others. I also wish I had found this site right away and before I started treatment. I would have had so much more information and questions to ask. We have members from many countries and several members are from Australia. Katastrophe (Kat) is a frequent visitor and we love her posts. You can look her up under the Memberlist (upper right side of the screen) and send her a private message. I hope other Aussie's see your post and say hello. Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Nov 26 2011 at 4:55pm |
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Hi Ann,
as you know, I am in Melbourne, Australia. There is an Australian site called bcaus.org.au with a sub group on triple negative. Have a look there too, if you haven't already. It seems like the standard of care here is the FEC100 then D. I had my first treatment of FEC on Friday and it was much easier than I expected. I walked the dogs on Friday afternoon and Saturday morning, did the housework, looked after the kidlets... a normal day really. I haven't had any nausea or discomfort at all, which is really encouraging. Fingers crossed I cope with the next treatment just as well. Sandra x
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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Nov 26 2011 at 5:07pm |
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Ann, did you go private or public?
The first surgeon I saw was in the private system (general surgeon with an interest in breast surgery??). She refused to operate on me because I was still lactating. She insisted it was 'too complicated' and that I had to have chemo first. When I questioned her, she shut me down with 'no, this is the way I want to do it'. I wasn't happy. A long story that happened in the space of a few days, lol, I ended up at the Alfred Hospital. The team of oncologists there said I should be operated on first - because the lump was just 2cm. We knew it was in my nodes, because 1 was enlarged and it was biopsied. The consensus of the oncologists was that if we start chemo first and find that it is the wrong combination of drugs, we may miss the opportunity to go in and something that is operable becomes inoperable. Made sense to me. I had a lumpectomy and axillary clearance - lump turned out to be 2.5cm and they took 29 nodes - 3 were positive (or should I say, 26 were healthy?). That was in October. I had the portacath put in on Thursday and boy was that unpleasant. I started my chemo on Friday. And here I am today. Probably time to get off the computer and get the kidlets ready. Off to a Xmas party today, first one of the season. I'd be really interested to hear your story Ann. Sandra x
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Juliedor
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Joined: Jan 12 2012 Location: Australia Status: Offline Points: 5 |
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Posted: Feb 20 2012 at 1:13am |
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Hi Girls,
I am an Aussie too.I look around the internet for sites pertaining to Triple negative breast cancer as we have some unique hurdles because of this diagnosis.
I live in The Hunter Valley NSW and was diagnosed just after my 50th birthday celebrations.
In the last almost three years I have had a lumpectomy and axcillary clearance,three treatments of FEC and Taxetere and a course of radiation.
After a recurrence in under a year I had a mastectomy,tried Xeloda then had lymph nodes come up on the opposite side and down my sternum.I had nine treatments of Gemcarbo and my latest scans show no evidence of any cancer.So fingers crossed.I have also made a lot of lifestyle changes after attending the Gawler Foundation In Victoria.
I hope you are all travelling OK on this bumpy journey.
Julie D
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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Feb 20 2012 at 1:38am |
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Hi Julie,
nice to meet you, but shame about the circumstances. I'm so sorry to hear that you not only had to deal with this disease, but have had to go back for more treatment. Did you have the FEC - Taxotere too? I am in the midst of that treatment. I had cycle 5 of 6 on Friday and side effects-wise, so far, so good (knock on wood). I've heard great stuff about the Gawler Institute. Maybe you can share some tips? If you don't mind. I'm in Melbourne, getting treated at the Alfred and they have been fantastic. I'm looking forward to the last chemo - it's not easy to go through this at any stage in life, but I think the demands of a young family takes its toll (my kids are 7yo, 5yo and 2yo). Keep in touch, Sandra x
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Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes. Lumpectomy & ALND 10/2011 FEC-D 11/11 - 03/12 Radiation finished 05/2012 |
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Juliedor
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Joined: Jan 12 2012 Location: Australia Status: Offline Points: 5 |
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Posted: Feb 20 2012 at 1:50am |
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Hi Sandra,
Yes, the first chemo I had was FEC and Texotere, 6 treatments.
The Galwer foundation teaches that your attitude and lifestyle have a lot to do with health.Since staying there for ten days last Febuary Phil and I have chosen to be vegan.I also have juices and meditate.Probably a hard thing to do with three littlies.We both feel amazingly well and my doctors are continually amazed at how well I am doing.I think they thought I had months left but I feel better than I have ever felt.Ian Gawlers book You can concur cancer is good.There is a weekly course at Hawthorn if yopu can't do the ten day retreat.
Good luck with your last treatment!
Juliedor xx
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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Feb 20 2012 at 4:13am |
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Hi Julie,
yeah - I hope you continue to amaze your doctors too! I am sure the folks here will be very pleased to read your story. There have been some heavy hearts on the forum these past few weeks and to hear of a fellow TN-er doing well is always such a morale boost. I know you said your last treatment was with Gem/carbo. Where are you at now, treatment-wise? Sandra x |
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Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes. Lumpectomy & ALND 10/2011 FEC-D 11/11 - 03/12 Radiation finished 05/2012 |
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Juliedor
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Joined: Jan 12 2012 Location: Australia Status: Offline Points: 5 |
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Posted: Feb 20 2012 at 4:57am |
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Hi Sandra,
In December last year when my scans came back clear, my oncologist and I decided to suspend all treatment.So at present, aside from my lifestyle changes and alternative treatments to keep my immune system strong, I am off all conventional treatments.
As you know, it's a day to day fight but at present I am very happy and very well and looking forward to my 2nd grandchild arriving this year.
Juliedor xx
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SandraB
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Joined: Oct 29 2011 Location: Australia Status: Offline Points: 130 |
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Posted: Feb 20 2012 at 5:03am |
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And Julie, we look forward to you telling us about his/her arrival!
I'm so pleased to hear you're off treatment and doing well. Again, thanks for sharing. Sandra x
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Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes. Lumpectomy & ALND 10/2011 FEC-D 11/11 - 03/12 Radiation finished 05/2012 |
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Apr 18 2012 at 12:57am |
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Hello to all the Aussie members............Ann, Sandra and Julie and any others reading the forum,
Noticed that we have a new member Lizzie on the forum from New Zealand. She posted on: http://forum.tnbcfoundation.org/new-to-this-site_topic9857.html So guess we could say she is a "neighbor" of yours. Hope all are doing well. With caring and positive thoughts, Grateful for today.............Judy ----------------------------------------- Lizzie, Sending lots of caring and positive thoughts across the cyberwaves and across the continents. Grateful for today...................Judy |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jun 26 2012 at 11:15pm |
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Thanks to MelissaP, who found this link to TNBC Australia. We hope our Aussie friends stay connected with us on this forum too! |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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