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New Triple Negative Breast Cancer Test Panel

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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2010 at 1:12pm
OMG....I lost my post...
I shall repeat...
 
Mr Condescending,
The INTERNET is not the only source of info. A great deal is our personal experience and hours and hours of research.
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2010 at 2:38pm
You guys crack me up. :)  
We should form a softball team or something.  Though I suck at sports, so maybe just a stitch and bitch with plenty of chocolate and without the yarn. 
love,
d

DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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NinaE View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NinaE Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2010 at 2:50pm
NewMe, that was one of the most amazing nutshell summaries of research I've read in a long time. Brava.

Edited by NinaE - May 27 2010 at 2:51pm
Stage IV at dx in Dec 09, at age 38. Mets to lung, axillary, IM and mediastinal nodes.

4xAC-->dd Taxol. Dbl mast, 6/10. Radiation, 8/10. NED since June 2010.
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2010 at 3:19pm
Denise..just name the place and time...I'm all in..
 
I was a baaaaaad girl....Evil Smile wasn't I
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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outnumbered View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote outnumbered Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2010 at 3:45pm
These marketing people must think we are idiots...
 
"gee I read it on the interweb so it must be true" DERRR
 
Puleese...  We read studies and journals that contain verified data.  It takes a lot more than someone promising results to make us turn our heads. 
 
They should try their marketing elsewhere. 
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008
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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2010 at 4:34pm
I'm here to tell you Mr. Boaz,

You have stirred up a "hornets nest". We triple negative girls, who "do not need your services", can become rather hostile when someone comes into our territory with a bogus, flashy, title; trying to sell their wares. SHAME, SHAME, DOUBLE SHAME ON YOU.

Hey NewMe, "Go for the Jugular".

OK Denise, can I be the bat girl. I feel like hitting something.

Love,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thenewme Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2010 at 7:44pm
LOL - Hornet's nest, indeed!  Nothing gets me fired up faster than some arrogant and clueless jerk who apparently thinks we're a silly, helpless bunch of nincompoops twittering around here for social hour just waiting to give them our money.Angry  This ain't no freakin' pink ribbon telethon - this is our LIFE.

I HATE the fact that I already feel like a walking time bomb with a big target on my forehead, thanks to this crappy diagnosis.  I'm not sure what it is about a breast cancer diagnosis that attracts wackos, snake oil salesmen, greedy corporations, and assorted other predators and thieves in droves, but it disgusts me. 

........whew.......

Now, Denise, when and where???? I'm in! And I'm bringing adult beverages to go around!

PS - NinaE- thanks!  I started with just a plain ole' rant but decided I'd add some real information in an attempt to balance the BS.
DX: IDC/TNBC 11/08 5-cm Stage IIb Grade 3. Age 39. Double Mast 12/08 (prophy right) with tissue expanders . ACx4-Tx3. Suspicious IM node. 25 Rads. BRCA NEG.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2010 at 7:49pm
This thread is too funny!  Now what about the guy that posts all the time trying to sell us golf clubs?  Is he clueless or what about this forum?

I'd like to add a point.  So even if there is a new test, how does it help us?  We've been dx, had surgery and gone through treatment.  All we can do is wait.  You'd think they'd be marketing this test to the hospitals and surgeons that will be running tests on newly diagnosed women.

Donna
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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outnumbered View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote outnumbered Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2010 at 8:20pm
Donna that is a very valid point.  Even when I got my additional opinions, I thought the pathologists might run other tests on my tissue, but they didn't.  They had enough and whats done was done. 
This thread is also making me laugh as well.  Lord knows I need a laugh, so thanks!  And nothing makes me laugh more than when it is at anothers expense...ok I am not completely evil, its just when it is well deserved...LOL!
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote chloesmom Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2010 at 8:53pm
thank you Denise!Wink
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hhfheidi Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2010 at 9:15am
Not to be the Devil's Advocate here but did anyone consider the possibility that the guy was sincere, albeit misguided?
Or am I being naive?
I read this thread and was not amused; just a bit chagrined at the acrimony of it.
JMOFWIW (no flames please)
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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2010 at 9:57am
It does seem as if some of the anger we feel at having cancer was directed at this guy.  Even if he is trying to market a product, it is a product intended to give cancer patients more options even if it can't currently serve that purpose.  I do see what you mean.
Peace,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thenewme Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2010 at 10:19am
Heidi,
I'm so sorry, and I feel terrible to have offended you.  Honestly, the last thing I want to do is to alienate anyone here (salesmen/marketers excluded).

That being said, I stand by my assessment of this guy (JMOFWIW), but I'll be more than happy to retract everything if I'm wrong.  If I thought the guy was sincere, I never would have been so harsh.  He came here with no regard for the community and its purpose, touting a "new" test panel, but couldn't or wouldn't answer some very direct and legitimate questions about it.  Then he disingenuously claimed not to be trying to market anything and became increasingly patronizing and insulting when he was asked to back up his claims. 

If he were sincere, he'd be open to questions and discussions.  He'd be upfront about the strengths and limitations of his "new" test panel and not try to overinflate the facts.  He'd have relevant answers to informed questions and/or not try to bluff his way through the questions he doesn't know answers to.

Anyway, again, I sincerely apologize to anyone I've offended with my rantings. 

Peace?
DX: IDC/TNBC 11/08 5-cm Stage IIb Grade 3. Age 39. Double Mast 12/08 (prophy right) with tissue expanders . ACx4-Tx3. Suspicious IM node. 25 Rads. BRCA NEG.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hhfheidi Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2010 at 10:44am
No need to apologize; I do (and did) see the merits of your position.

It's just that there can be many misunderstandings when people try to articulate their thoughts via online forums. These sites are great, but nothing takes the place of face to face discussion for getting across points, emotions, and clarification of fact(s).

Usually, I try to give the benefit of the doubt in these situations. In this case it's kind of a "don't shoot the messenger" feeling for me.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2010 at 10:45am
My 2 cents. Salesmanship 101 is recognizing the process of starting with management first. Anything less is a disservice to your product. We here will be the first in line to be interested in new solutions and new tools for our fight. But since there is a solid team already in place, also known as the TNBC Foundation, it would be most logical for any sales person to have started with them to get approval. Their appoval would automatically generate trust and openness in discussion.
 
By opening a thread such as this, attention is garnered but trust well, not so much. It's too bad, I would have been happy to have invested my time and energies into looking at this service, but without initial research backup the discussion now seems headed south. 
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2010 at 10:52am
I guess the only thing that ticked me off was his condescending attitude toward me and the other great people on this site. I am not a researcher and let that business to those who have talent in that area. For him to just write these people off just lit my fuse.
I am also sorry if I offended anyone.
Love and I mean lots of love,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2010 at 10:58am
I just re-read my post....Did I call myself great????? LOL...me not great!!
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hhfheidi Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2010 at 11:01am
lol
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thenewme Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2010 at 1:39pm
LOL Carol,
We think you're great too! LOL
DX: IDC/TNBC 11/08 5-cm Stage IIb Grade 3. Age 39. Double Mast 12/08 (prophy right) with tissue expanders . ACx4-Tx3. Suspicious IM node. 25 Rads. BRCA NEG.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NinaE Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2010 at 3:26am
I think it's especially important to be straightforward and not deceptive when your audience and market are people who are dealing with a scary disease. It's really not OK to exploit the hopes of vulnerable people.

Being straightforward is not that hard -- all you have to do is be honest. Honest about who you are, honest about what you're selling, honest about what benefits it can provide -- what benefits it can provide NOW, given the current state of research.




 


Stage IV at dx in Dec 09, at age 38. Mets to lung, axillary, IM and mediastinal nodes.

4xAC-->dd Taxol. Dbl mast, 6/10. Radiation, 8/10. NED since June 2010.
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