Triple Negatives

[denise_s]

Hi Confusious,
I am triple negative too. When the onc told me at first I thought thats great, then I did some research and nearly died on the spot. However its not as bad as you'd think. Like the other say there are lots of positives in it. One study I came across said that with triple negative only you can reduce the risk of recurrance by 40% by exercising an hour daily. I have stuck to this religiously and am halfway through chemo and still running, walking
and swimming and carrying on a normal life.

I have a really good article on triple neg though it gets very technical at parts but at least it gives you a good idea. The most important things I took from it was that the ideal chemo schedule is EC followed by taxol with carboplatin. A few other newer therapies are coming online (as mentioned in the article) but they were not available here yet but you might be lucky. The article is here http://bcwatchdigestprev.evidencewatch.com/

Its great not have to keep coming back for more chemo like the HER+ girls and no tamoxifen either, they are nasty drugs.

My onc is apparently a major southern hemisphere specialist on triple neg in case your onc wanted to talk to him, he is Paul Mainwaring at the Mater in Brisbane.

Best of luck to you and stay in touch. I will PM you my email if you want to chat.
Denise

[yowyow]

bumping for bella

[Kiwijanelle]

Thanks Nav!

That is good info - had remembered about the 8 year thing. I stopped looking on line in the first few months after I was diagnosed as all the triple neg stuff completely freaked me out, and wasn't good for me! Or my chocolate consumption!!!

I completely agree with all the info you posted Nav !
And there is lots of study going on with triple neg - I was/am on the Beatrice study for triple neg, which is a huge global trial trying to figure out even better options for triple negs. Was v fortunate that my onc was involved with the study and therefore right onto it.

Janelle

[Debs]

Like this information

[hibiscusmum]

Thanks yowyow,

Love having you on here, so much knowledge. You put my mind at ease

[yowyow]

yeah that is a good report...... there is soooo much scary stuff written about triple negative

It scared the sh%#t outa me for a while. I searched and searched for positive stuff..... not
much out there............

here is my positive thinking now.........(this is not a this v's that post - just some positives for triple negs - and just my opinion)

Triple neg is mostly aggressive grade 3 - its positive that we get hit hard with treatment from
the get go. It is just about standard now, that even with negative nodes, triple negs will do chemo and its proven that chemo works better on er- pr- (there is a report I posted in primary under "triple negs" thread - will bump it)

It would be great to have other first line treatments but.......... positive - we dont have to do hormone treatment for 5 years, we dont have to spend a year going back for herceptin infusions every 3 weeks.

Its positive that research is beginning to show that we can nearly be called "cured" after 8 years, that does not mean we cannot get a new primary, especially if your BRCA1 or 2+ ... but cured from initial dx. With er/pr+ studies show it can recur after 20 years.

OK, my thinking.......... as long as we dont get mets (thats a whole different kettle of fish)
its the best cancer to get!

[confusious]

Thanks ladies will look up that website when have time and will be keeping a very good eye on myself for the next 3 years. Might even write to my oncologist and get himto dosome research as he seemed not so knowledable about it last year. Thanks.

[TanS]

Thats fantastic news Nav............first I've heard of that.

Tanya

[yowyow]

hi, yep we have higher rates of local and metastasis recurrance in the first 3 years than
anyone with positive receptors - but after 4 it gets much much better
there are so many trials around now for triple negative - PARP is showing great results

here is a bit of info' off the nosurrender triple negative forum..


Myth 2: Prognosis

Now let me first address the second myth and the issue of prognosis in triple negative disease. This has been critically elucidated recently by Rebecca Dent's[1] team at Sunnybrook who demonstrated that triple negative disease exhibits a unique recurrence pattern and that not only is there a very sharp decline in recurrence risk of triple negative disease after the fourth year post-diagnosis, but that the risk of distant recurrence falls to absolute zero! - unheard of in any other type of breast cancer - from eight years and after (and is in any event extremely small, almost negligible, even from five years forward), and in addition, although local recurrence is a risk factor for later distant recurrence among women with all other types of breast carcinomas, this does NOT hold true for triple-negative tumors � it was found that any local recurrence in triple negative disease is not associated with increased metastatic risk.



All in all, we are finally beginning to arrive at a new understanding that triple negative disease is more a matter of a qualitatively different pattern of recurrence and risk, rather than as traditionally thought, a radically different low-prognostic disease entity. Indeed, Marina Cazzaniga and her colleagues[2] at Treviglio Hospital, Italy found in the NORA study contrary to other observations, that triple negative patients did not have worse prognosis, in terms of disease-free (DFS) or overall survival (OS), than others in the total cohort of 3515 patients treated in 77 cancer centers in Italy from to 2000 to 2003. The NORA study used a median follow up of 27 months, while we know from the Dent findings that the distant recurrence risk peaks at approx. 36 months. Therefore survival past the 3 year peak would appear a seminal hurdle for ultimate survival and mortality in triple negative

[hibiscusmum]

Hi,

I'm triple neg too. Yes all the info from docs is different & internet just scares you. I have been on the site mentioned below.

Am I right in saying that trip neg is a basal cancer?

I'm about to undergo genetic testing to see if I carry the gene.

Sorry I can't be of much help as I have only recently been diagnosed & so none the wiser & always looking for info

[Urthgirl]

Hi there,

Im triple negative aswell, I was pretty put off by all the bad rap on the internet about it too. But Im under the belief that Triple Negative BC responds very well to Chemotherapy particulary because of its aggressive nature, so thats a good thing.
The TNBC foundation website is a wealth of knowledge and info.

Cheers

[Ruth]

Hi

This may help with some good information for triple neg

[TanS]

Hi,

I know there are a few triple neg ladies on here............I'm pretty sure Nav (YowYow) has done a lot of research on it.........and hopefully she will log in again soon.

Best wishes
Tanya

[confusious]

I know this comes up every now and then. But does anyone have any more info on Triple Negatives. Every Doc I speak to has a different view on them, some good some bad and all you read scares the daylight out of one.