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03-22-2007, 03:59 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
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Looking for a Specialist...Please help provide some names
I am currently NED (hopefully). Nine months ago I finished late herceptin. Since that time, I have been struggling with what I should be doing or not doing in order to help prevent a recurrance.
In my little (rural) corner of the world, we have one onc who alone serves a fairly large area of the state. He has so many patients and treats all types of cancers. There is no way he can keep on top of all the research and information that probably comes in on a daily basis.
I talked to my onc this week and he said he would get me an appointment with anyone in the country that I would like to see. I would come armed with a list of questions...of special interest would be the vaccine trials which have recently been discussed here.
If anyone could give me the names of breast cancer specialists that you have either seen personally or heard about, I would really appreciate it. I suppose they all are familiar with Her2+ breast cancer.
Thanks in advance for your help.
__________________
Blessings and Peace,
Barbara
DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.
Accepting the gift of life, I give thanks for it and live it in fullness.
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03-22-2007, 08:23 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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If you don't mind traveling to California, I highly recommend Dr. Pegram at
UCLA. He does not mind giving second opinions, is heavy into research and an expert on Her2+++. He was there during the development of Herceptin.
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03-22-2007, 09:11 PM
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#3
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Senior Member
Join Date: Nov 2004
Location: Colorado
Posts: 131
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Dr. Patrick Moran...
... Rocky Mountain Cancer Centers (~12 in Colorado). He is in Boulder Colorado, and HAS to be the most loving and compassionate man on the face of the earth! He knows what he is doing and is willing to think outside the box.
When Tykerb was only available for trial, he went to the overtime effort of certifying all 12 Colorado facilities for the trial so he could get Lisa on the trial. At that time no one else in Colorado was on the trial - he did it just for Lisa!
Anyway - I can provide contact info if you are interested!
Love and Light
Mel
__________________
Mel Gordon, Husband of Lisa Lowe - Queen of Love and Light and the bravest person I know!
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03-23-2007, 07:53 AM
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#4
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Guest
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Barbara, If you want to come to New York, I can give you the name of my oncologist and I will also call his office and let him know about you. Please send me a private message or email if New York is in the offing.
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03-23-2007, 08:01 AM
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#5
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Barbara,
I traveled to MDAnderson in Houston TX . If I can help please email me and I will be happy to provide information,Dr Banu Arun is my medical oncologist there.
Warmly,Marcia
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03-23-2007, 05:06 PM
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#6
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Senior Member
Join Date: May 2006
Posts: 143
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I can recommend Dr. Silvana Martino, in Los Angeles. Google her and see if you're interested. If so, I'll look up her phone #. She's a big research bc specialist and would be a good consult. Also Devon Webster in Portlant (did I spell that right -- Chrisy didn't you see her?)
Linda
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03-23-2007, 05:07 PM
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#7
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Senior Member
Join Date: May 2006
Posts: 143
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I meant, did I spell the docs name right. Yes, it's Portland. Oregon. Oops.
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03-23-2007, 09:41 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Nope I see Dr. Hope Rugo at UCSF. Also very "cutting edge" and a top researcher. She was, indeed, the first person who gave us any "hope"!
__________________
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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03-23-2007, 09:48 PM
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#9
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Also Dr. Slamon in UCLA.....I just LOVE HIM!
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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03-25-2007, 10:27 AM
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#10
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Specialists
Dr. Slamon is great. Dr. Pegram is leaving UCLA soon, don't know where he is going. But I would recommend Slamon at UCLA or DR. CHAP (from UCLA) now in practice in Santa Monica. She was voted one of the Top 10 breast cancer Dr.s in the U.S. by Redbook magazine. Love, Vickie
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03-25-2007, 08:04 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
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Thank you everyone, for your replies. They are most helpful. I will soon be talking to my onc to see if he can get me in to see one of these Doctors. I'm not sure how long of a wait time there will be...guess I'll know soon.
Thanks so much!
__________________
Blessings and Peace,
Barbara
DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.
Accepting the gift of life, I give thanks for it and live it in fullness.
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03-26-2007, 03:11 PM
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#12
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Senior Member
Join Date: Dec 2006
Posts: 63
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Dr.Nicholas Robert
Hello,
My mom's doc is top 5 in the world and a v. nice man. He's in suburban Washington D.C. if that's not too far out for you.
Hugs,
Anne
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