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06-19-2008, 09:22 PM
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#1
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Does anyone know Dr. Slamon's phone #
Does anyone know how to reach Dennis Slamon? I am looking for a second opinion in the LA area and I know he had a practice in Santa Monica because I was going to go see him a year ago, but cancelled. Or does anyone know an expert in Inflammatory BC in LA?
Thanks for your help, Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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06-19-2008, 11:32 PM
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#2
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Vickie, I am sure if you PM Jean, she could get it for you. (I will email Jean and let her know of your request in case she does not come on the site right away.
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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06-19-2008, 11:35 PM
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#3
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Vicki, you can try Dr. David Chan in Redondo Beach or Dr. James Waisman at Breastlink 310 539-2300 (Manhattan Beach area) If you call Dr. Waisman, let him know Maryanne from Hilo, HI recommeded him to you.
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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06-19-2008, 11:41 PM
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#4
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Vicki, I think I just found the address. I consulted with Dr. Mark Pegram for a 2nd opinion and at the time they were in the same office.
UCLA Healthcare
2336 Santa Monica Blvd. Suite 301
Santa Monica, CA 90404
310 829-5471
(this is the no. I had for Dr. Pegram)
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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06-20-2008, 07:24 AM
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#5
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Hi Vicki,
I see our lil'l sis maryann has given you the contact address and number.
Here is another number for dr. Slamon
310 825-5193...
Give him a hug from me.
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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06-20-2008, 09:30 AM
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#6
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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And also Philomena McAndrew at Tower Oncology. She takes all the tough cases. 310-888-8680. Hard to get in to see but she'll spend whatever time you need with you - never rushes.
Another good one is - John Glasby at UCLA.
BTW - Dr. Linea Chap in Santa Monica is popular now but I was not thrilled with her consult. She seemed more focused on selling me on the one clinical trial they were running (heat shock protein w/doxel) as opposed to what would be best for ME.
(Philomena is my onc)
Good luck!
Flori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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06-20-2008, 03:11 PM
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#7
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Thank you so much!
Harrie, Jean and Flori,
Thank you for your insights and referrals. I have been unhappy with Premiere Oncology as of late (a very high turn-over amongst the nurses and schedulers) and felt rushed and stressed when I'm there. I love Linea but feel it's time to move on now that the Doxil is not working. My skin mets are spreading and now I have involvement in the neck, right hilar region and my left lung. Dr. Chap has not called me back for another treatment option in 2 weeks, but her new nurse just called yesterday and thought a second opinion was OK and then she would decide. I called Dr. Slamon and they were great.
Even though they are not seeing new patients, his secretary/scheduler is going to get me in as soon as possible.
I am so grateful for all the help you provided and I plan to call Flori's Onc as well.
I love you, dear sisters! Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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06-20-2008, 03:29 PM
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#8
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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We love you too!
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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06-21-2008, 09:16 AM
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#9
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Senior Member
Join Date: Nov 2007
Location: Brentwood, CA
Posts: 76
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I also consult with Dr. Slamon although my primary onc is Dr. Silvana Martino at The Angeles Clinic and Reseach Instutute (affiliated with St. John's Hospital in Santa Monica). I have never felt rushed by either her or Slamon. I love Dr. Martino...Her number is 310-582-7900. Dr. Martino's younger sister had Her2 positive breast cancer a few years ago at the age of 43. Dr. Martino seems very invested in my care...
__________________
Janelle
Diagnosed October 2006 at age 37 wtih grade 3 IDC and high grade DCIS
Stage 1c triple positive, no node involvement but
vascular invasion
multifocal disease
Lumpectomy November, 2006
A/C every 3 weeks (started Jan., 2007 and finished March 2007); followed weekly Taxol (finished June 2007) concurrent with Herceptin (finished March 2008);
Bilateral Mast with immediate recon in Sept 2007; finished recon Dec. 2007
Started 5 years of tamoxifen Nov. 2007; started peptide vaccine clinical trial at MD Anderson October 2008 and finished active part of trial in April 2009 (monthly injections of AE37 peptitde (HLA type specific) with GM-CSF or GM-CSF alone depending on if I was in experimental or control group); started Zometa infusions June 25, 2009- 4mg every 6 months for 3 years (taking it "off-label" to try to prevent mets)
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