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01-13-2007, 12:55 PM
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#1
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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just thinking...
I've been thinking about this for awhile and now I'm thinking I need to take some action. I've had this idea of going to one on the BIG cancer center treatment facilities in the US. I would, in my fantasy anyway, like to have a liver met biopsy. Have it tested for the things we can test for as the list is growing e.g. igfr, egfr, veg-f, er/pr/, her2, pten, etc. Then meet with a doc and say, "what would you do with me?".
My questions for you guys are these:
where? I have relatives on the East Coast (Dana Farber, MSKK, Mt. Sinai)
i live in Colorado so MD Anderson and UCLA aren't too far. I could probably stay with friends of a friend in Seattle for that center-what is the best place fo you think?
has anyone had experience in doing this and do you feel it made a difference for you vs. your regular oncologist?
I think my oncololgist rocks-I love her and she is tuned into breast cancer beautifully, but Colorado is pretty small-fry for studies and research as compared to the coasts or MD.
I have friends and family willing to help/accompany, etc.
You feedback is always so great and appreciated. I would LOVE your thoughts.
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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01-13-2007, 01:49 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Joy,
I would definitely recommend getting to a comprehensive cancer center for some additional opinions. I see Dr. Rugo at UCSF, but have my treatment here with my local oncologist (who is also no slacker!).
I don't know which is "best" but if it were me, I'd want to get connected with the cutting edge research in Her2 and/or treatment of liver mets. MD Anderson seems to be in the forefront of RFA and surgical treatment of liver mets, and of course UCLA is a hotbed of Her2 research. As is MSK. So it would seem that any of those would be good choices.
You could do this and still continue with your local oncologist - you are mainly seeking direction and options which she might be able to implement locally.
One thing was clear at San Antonio - there is a LOT of targeted research continuing as is evidenced by the number of things they can test us for as you note. This gave me hope that there are still many options out there and more in the pipeline.
By the way, I also saw a poster there which confirmed that even if initial CTC count was "high", an early drop in this with treatment was a positive indicator. I thought of you and your "ta-da" zero CTC.
Keep pushin on, Joy!
Chris
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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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01-13-2007, 02:04 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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I agree with Chris. Just remember, Eric Winer (Dana Farber), Jenny Chang (MD Anderson), Hope Rugo, Mark Pegram, Dennis Slamon - these are the TOP Her2 oncologist/research oncologists in the world!!!
I live in NJ (half way between NYC and Philadelphia). If you choose Fox Chase or Memorial Sloan Kettering - you can stay with me (I am being 100% serious).
Just let me know. I will pick you up at the airport and go with you or drive you there.
Hugs to you
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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01-13-2007, 03:04 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Joy...
I'm very methodical, but after reading Becky's post, I would DEFINATELY, take the HER2 experience into consideration. Take care and God bless.
Rhonda
http://www.usnews.com/usnews/health/...pecihqcanc.htm
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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