Triple Negs ..

To keep information about Triple Negative Breast Cancer together and easier to access.
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hibiscusmum
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Re: Triple Negs ..

Postby hibiscusmum » Sun Nov 07, 2010 9:23 pm

Hey JudyB,

Yes there are 5 visits, I've got 1 up my sleeve :wink:

The nurse at the GP's has organised it for me then I've got another appointment for my GP to get it all started.

http://en.wikipedia.org/wiki/Exercise_Physiologist :wink:

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Re: Triple Negs ..

Postby JudyB » Sun Nov 07, 2010 9:12 pm

I don't think you are allowed to get a clean, it has to be something that affects your health, but then who knows. It's not just cheaper, it is free. You need to ask your GP to organise it for you. I asked my GP and the nurse at her surgery organised it all for me.
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: Triple Negs ..

Postby jenny-pop » Sun Nov 07, 2010 9:02 pm

Wow, so much info.

What is the GP plan? How do I sign up?

I am in need of some dental work. I need a couple fillings and a clean, wouldn't mind getting it for cheaper. Also the dietician would be good I think. What is an excersize physiologist?

Thanks again Nav, you are a fountain of info. :D I will ask my onc about trials.
Triple Neg Diag: Sept'10. 28mm Grade 3 invasive DC. SNB, and Lumpectomy Sept 27th. Clear margins and node negative. Full clearance 1 positive node. Local recurrance Feb 2011, LB Mast. Chemo from Dec 2 2010 - June 10, 2011. 30x rads in July/Aug. Recon and prophylatic mast Oct 17 2011 and pregnant..

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Re: Triple Negs ..

Postby JudyB » Sun Nov 07, 2010 7:30 pm

Hmmm I'm fairly sure the GP plan is 5 visits per year which means that you should have another visit there somewhere.
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: Triple Negs ..

Postby hibiscusmum » Sun Nov 07, 2010 6:17 pm

Oh maybe I've called it the wrong thing? But the GP said that I had up to $4200 of Dental (which I do need as my filling has fallen out again after only being redone a few months back. Also I am entitled to 2 Dietician visits & 2 Ex Phys visits all bulk billed?

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Re: Triple Negs ..

Postby JudyB » Sun Nov 07, 2010 6:06 pm

Yes, I agree about the dietician. I changed my mind about seeing one when I saw how much it cost. Mind you I have been seeing one at my gym for years and did weight watchers too and I have so much information about eating healthy that it's ridiculous. If I hadn't done any of that then I might have been more tempted.

The dentist shouldn't be part of the GP plan though so please don't waste any visits on that. There is a different scheme for dentists where you get $4200 worth of dental visits over a two calendar year period which means if you go now you will only have 14 months to use that money. Anyway, just mainly didn't want you wasting your GP plan visits on something you can get under another scheme.
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: Triple Negs ..

Postby angel33 » Sun Nov 07, 2010 5:00 pm

Hibiscusmum, before comitting to the sessions for ECP, enquire re pricing. Ive heard dietician fees cost a lot more than the exercise physiologist.
Good luck and cheers
EBC 1997, bony mets Dec 2000, liver mets april 2007, chemo since

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Re: Triple Negs ..

Postby hibiscusmum » Sun Nov 07, 2010 4:35 pm

Jenny-pop,

I've just become part of the GP Care Plan where you are entitled to Medicare Bulk Billed services. I have chosen Dental, Dietition & an Exercise Physiologist. I believe keeping weight controlled is a big part of all of this & I'm dissapointed, although not surprised of my weight gain during chemo, so I'm giving it a go :wink:

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Re: Triple Negs ..

Postby yowyow » Sat Nov 06, 2010 7:58 pm

Hi Jenny, we cannot believe stats as by the time they are collated, they are years old.
9 months would of been for advanced triple neg...... there are members here on parp
that were diagnosed with mets and have lived much much much longer than that,
the US forum site BCORG has members the same

I have read of trials in the US that include parp with chemo for early breast cancer and parp continues like herceptin does
for HER2 for a year or 9 months (I did copy it but for some reason lost it and it wont paste)

I could not find any trials in Australia for the same, only for ppl with triple neg mets

If you want to be involved in trials, I would talk to your onc and the trial admin at your hospital.

I applaud anyone who is part of a trial, it may help them but it also helps others in the future :clap:

:hugs: :hugs: :hugs: Jenny, please dont let your head fill with stats, we are not stats!
and as mentioned above, most conclusions are 5 years old, treatments have advanced so much in this time.
Nav
every day without laughter is a wasted day !!!!


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Re: Triple Negs ..

Postby jenny-pop » Fri Nov 05, 2010 2:26 pm

Thanks so much for the bump Nav :)

I read the research and dont understand a lot of it. Would I qualify for the parp trial since I am triple neg, I would like to try anything and everything to stop this from coming back or metatisizing. I am super nervous after reading in there that survival is 9 months on average after reoccurance....that freaks me out.

Since reoccurance is lower with low fat diet should I see a dietician and get a super strict healthy diet plan so I can lower my chances also?

Thanks!

Jen
Triple Neg Diag: Sept'10. 28mm Grade 3 invasive DC. SNB, and Lumpectomy Sept 27th. Clear margins and node negative. Full clearance 1 positive node. Local recurrance Feb 2011, LB Mast. Chemo from Dec 2 2010 - June 10, 2011. 30x rads in July/Aug. Recon and prophylatic mast Oct 17 2011 and pregnant..

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Re: Triple Negs ..

Postby yowyow » Thu Nov 04, 2010 8:25 am

bumping for Jenny

quite a few good links and info through all these pages........ there is lots of research
and good results with trials going on for triple negs
Nav

every day without laughter is a wasted day !!!!




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Re: Triple Negs ..

Postby yowyow » Fri Jul 16, 2010 8:21 pm

bumping for bella
Nav

every day without laughter is a wasted day !!!!




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Postby Debs » Fri Oct 16, 2009 7:35 pm

Congrats on your 3years your amazing!!
BC dx April 2008. triple negative, 1.2 cm, no nodes. Had FEC x 6.

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Postby daffodil » Tue Oct 13, 2009 11:00 pm

Hi Nav,
A great read. Congrats on your three years from a fellow triple neggie who has also reached the 3 year mark NED.
daffodil
It came to pass not to stay.
Triple negative dioagonis 2006. Lumpectomy no node involvement AC, radiotherapy. Taxol commenced stopped due to severe reactions.

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Postby Doxiamonev » Mon Oct 12, 2009 9:39 am

Thanks Nav :hi5:
Sorry I haven't been in contact- Congrats on ur 3 yrs :clap:
Hugs

Doxia
Some people are always grumbling because roses have thorns; I am thankful that thorns have roses." Alphonse Karr

Dx 27.12.07,Gr 3, IDC Lt breast 1cm (Prim Ca) & 2.5cm (L/Node)
Bilateral Mastectomy & tissue expanders inserted, Axc. clearance 1/17+, Triple Neg.Tx 4 AC chemo,12 wkly Taxol (28/7/08)2 yrs NED!


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