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Old 01-28-2010, 01:09 PM   #1
chrisy
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Overheard at the airport...

OK, so I really try not to eavesdrop on people's conversations - despite how LOUDLY THEY ARE CONDUCTING THEIR "PRIVATE" CONVERSATION in public places.

But when someone sitting next to me starts up a conference call, (complete with powerpoint) and starts out talking about Her2+ breast cancer...well that's just too much!

That happened to me a couple of days ago. It seemed to be a group of people updating a list of cancer treatments. Maybe an HMO or insurance utilization committee - because they kept referring to "members" and costs (as in, we could add that, but it would add costs).

I felt a little bit like a spy...

It was quite interesting, and at times I was tempted to pass him a note when he was asking about "did anyone see anything at SABCS about this...?) but I resisted, and someone actually ON the call would eventually come up with the right answer. I was also impressed that they actually DID pay attention to the research.

Here's some random overheard comments from this call that gave me a slightly new perspective:

(When they did not have consensus on something) "Well, let's put it out there and see what the happens. I haven't heard much from the oncology community on this".

The implication being, for me, that it really does make a difference if oncologists are really pushing for a therapy...and we can help this process by continuing to bring up research if our home oncologist isn't a breast cancer specialist on the cutting edge. and that the combination of letters from the oncologists and copies of data could move the needle.

"Well, you know if it was my wife...I would definitely do it. But it is expensive". (This one took everything I had to keep from screaming "hey you (expletive deleted) I'm someone's wife, too!) I couldn't tell where exactly he stood on it, but it clearly made him uncomfortable

A fair bit of conversation around the issues of "what population is appropriate for a given test or treatment". I'm not sure if this made me hopeful (that they are actually paying attention to targeted info) or worried (that they were drawing lines in the sand daring anyone to think outside the thorougly studied box)

I wished I had gotten the chance to talk to this man, but they went through all the breast cancer stuff, then started moving on to other cancers...and I had to go catch my plane! Maybe next time...
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 01-28-2010, 06:01 PM   #2
Rich66
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Re: Overheard at the airport...

Ha! I picture you sitting across from them peering over an upside down newspaper. Do they actually use beans to count with?
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Old 01-28-2010, 06:28 PM   #3
chrisy
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Re: Overheard at the airport...

Hey, watch it! Not all bean counters are evil (I am one!)

I should have had my spy shades on....
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 01-28-2010, 06:36 PM   #4
Carolyns
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Re: Overheard at the airport...

hmmmm.... I agree that we need to keep pushing our doctors and then standing by them and pushing right along side when they need us. I know that you are very active and brave representing us and the breast cancer community.

PS - You are not a bean counter... but there may have been some on the other end of the phone.

Where did the phrase "bean counter" come from and what is it's exact meaning?
: : : A bean counter considers only quantities when
: : : qualities should be considered. Suppose an
: : : editor of a newspaper gives pay raises to staff
: : : members on the basis of the number
: : : of articles written rather than the quality of
: : : the articles. The editor is a bean counter.

Last edited by Carolyns; 01-28-2010 at 06:40 PM..
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Old 01-29-2010, 03:50 PM   #5
Jean
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Re: Overheard at the airport...

Teehee, Chrisy I can just imagine you sitting there in a beige trench coat...collar up around you neck...your eyebrows frowning....head turned so your ear could pick up the words...proves that you NEVER know who is next to you in a public place.

Remeber the old saying during WW 11 " Loose lips sink ships..(now of course this was before my time) but I remember this as a history buff...Well let's just say if your plane was not ready and waiting for you...you could have sunk his ship for sure.

Love ya,
Jean
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Old 01-29-2010, 05:30 PM   #6
Jackie07
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Re: Overheard at the airport...

Chrisy,

You reminded me of Audrey Hepburn in Charade... I can just picture you wearing a polka-dot scarf and white-rimmed sunglasses - glancing through the newspaper in front of you...
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Old 01-30-2010, 08:26 AM   #7
Lori R
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Re: Overheard at the airport...

Chrisy,
Too funny.....very interesting insights.

I've always envisioned the "decision making process" as kind of a big,hazy cloud. Not real people, having real conversations (made even more official with a power point deck) based on the very information we try to read and keep current on.

Yikes...I'll have to try to focus when the technical details in some of the current literature becomes a little tiresome and continue to advocate with my very conservative Onc.

Thank you for providing a very ummmm...unique...perspective.


Good work OO7...Lori
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2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
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July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 01-30-2010, 08:57 AM   #8
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Cool Re: Overheard at the airport...

Our ChrisyGirl ... always on the lookout ...

Name:  huge_63_315441.jpg
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Old 01-30-2010, 09:05 AM   #9
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Post Re: Overheard at the airport...

PinkGirl, I love that "picture of Chrisy"! Michka
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12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 01-30-2010, 10:46 AM   #10
chrisy
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Re: Overheard at the airport...

TOO FUNNY PinkGirl!

Actually it was more of a trench coat and sunglasses thing...very subtle.
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 01-30-2010, 12:26 PM   #11
karen z
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Re: Overheard at the airport...

Nice Chrisy!
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Old 01-30-2010, 03:21 PM   #12
Jackie07
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Re: Overheard at the airport...

Chrisy,

You are my new 'idol'...
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
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Old 01-30-2010, 05:59 PM   #13
caya
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Re: Overheard at the airport...

Oh, VERY SUBTLE Chrisy.

all the best
caya
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Old 01-30-2010, 06:17 PM   #14
lizm100
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Re: Overheard at the airport...

Chrisy-
you crack me up....I hear the pink panther theme in the background.
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