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09-01-2010, 07:16 PM
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#21
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
According to one of my oncologists herceptin has really changed the HER 2 prognosis radically, and it is actually likely to have better outcomes than non HER 2+ types. Not sure if I believe him but....Tykerb is also a HER2 targetted therapy that has been good for me. I wish I could have had Herceptin when my cancer first appeared, so I'm very glad it is an option for her. All the best to you, your wife and your little ones. Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004 6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006 oopherectomy, Arimedex
12/2006 liver mets largest 9cm
1/2007 Herceptin,
3/2007 Taxol + Herc
1/2008 Herc alone
4/2008 Multiple bone mets,Zometa
7/2008 Herc + Gemcitabine
8/2008 Herc+Navelbine/vinoralbine
10/2008 Herc+Carboplatin+Taxol
12/2008 Tykerb+Xeloda
2/2010 Herceptin + trial drug
5/2010 Herceptin+Tykerb
8/2010 Tykerb+Abraxane
9/2010 Abraxane
12/2010 Abraxane+Tyk+Herc
4/2011 Tyk+Herc+Femara
6/2011 Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011 Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011 Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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09-16-2010, 11:03 AM
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#22
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Senior Member
Join Date: Jul 2010
Posts: 34
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
Just wanted to give a quick update. My wife did a follow up PET/CT yesterday. First TCH was done on Aug 9, a second on Aug 30, and third will be on Monday. The numbers related to the isolated liver mass....
First PET/CT Aug 5
SUV 10.8
Size 3.7 x 3.2
Second PET/CT Sep 15
SUV 5.0
Size 2.3 x 2.0
We're thrilled by this improvement. I'm assuming this is "normal" to see such shinkage after chemo does its job (dropping by just over 50%). Another CA 15-3 was drawn yesterday, so results will be in soon.. (started at 1003, dropped to 527 as of Aug 30)
On another note, hair finally gave out, 35 days after first chemo, so fully shaved yesterday and amazing real human hair wig was already ready and put on. It looks better than her old real hair! (for those in the Southern California area: we highly recommend Piny of Beverly Hills. Google him).
Thanks all for the continued support, kind words of encouragement, and resources.
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09-16-2010, 03:48 PM
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#23
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
Wonderful news! thanks for sharing.
Hugs
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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09-17-2010, 08:27 PM
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#24
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Senior Member
Join Date: Jul 2008
Location: New Boston, NH
Posts: 275
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
Fantastic news! It can definitely help having a beautiful wig too!
__________________
-Sarah-
Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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10-14-2010, 12:33 PM
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#25
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Senior Member
Join Date: Jul 2010
Posts: 34
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
Wife just completed 4th of 6 TCH treatment. Ran tumor marker tests on the day of treatment and it dropped nearly 70% in the last month.
CA 15-3
1003 as of 8/3 (first reading)
527 as of 8/30
334 as of 9/15
102 as of 10/11 (effects of first 3 regimens only, 3 to go)
Keep the positive vibes flowing!
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10-14-2010, 12:54 PM
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#26
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
Wonderful news! I'm so happy for you.
Love
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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10-14-2010, 04:23 PM
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#27
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
Great news! See, that stuff really works.
Thanks for the frequent updates - we're all wanting to follow this with you.
__________________
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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11-04-2010, 11:15 AM
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#28
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Senior Member
Join Date: Jul 2010
Posts: 34
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
Just a quick update...
CA 15-3
1003 as of 8/3 (first reading)
527 as of 8/30
334 as of 9/15
102 as of 10/11
47.9 as of 10/2
It's amazing to see this tumor marker go from over 1000 to under 50 after 4 cycles of TCH! Thank you all for the continued support. After the final cycle later this month (11/22), we will be weighing the next steps. Currently it's looking like some form of liver resection is being considered, then deal with a single mx. Discussion of even continuing some Xeloda before a surgery has been brought up as well.
Anyone with experience here, please let us know your thoughts.
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11-04-2010, 03:26 PM
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#29
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Senior Member
Join Date: Apr 2010
Posts: 129
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
Wondeful news!! I wish I had had my tumor markers drawn that often. Mine have remained around 36 (tested every 3 months). I'm so glad your wife's have dropped to dramatically.
__________________
March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast.
April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
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11-30-2010, 11:37 AM
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#30
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Senior Member
Join Date: Jul 2010
Posts: 34
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
Just a quick update on my wife's tumor marker improvements (CA 15-3)
1003 as of 8/3/2010 (first reading pre-first chemo)
527 as of 8/30
334 as of 9/15
102 as of 10/11
47.9 as of 10/29
25.3 as of 11/22 (considered "NORMAL"!! Amazing to be down from 1000+. This only takes first 5 of 6 cycles into effect).
December 13 will be next full restaging.. hopefully that liver met will be gone. Then meeting with liver surgeons to discuss options...
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11-30-2010, 12:05 PM
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#31
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
Looks like you had alot to be thankful for this Thanksgiving. And an early Christmas present too!
Keep the faith.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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11-30-2010, 12:43 PM
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#32
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Senior Member
Join Date: May 2009
Posts: 510
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
That's AWESOME!!! So happy for you and your family!!! As for the Xeloda, is your wife getting radiation after her mastectomy? I had Xeloda after surgery and together with radiation. I got a low dose and it was very tolerable.
Wishing for continued success for your wife!!!
__________________
ER+ (30%)/PR-/HER-2+, stage 3
Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin
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11-30-2010, 04:05 PM
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#33
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Senior Member
Join Date: Jul 2010
Posts: 34
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
No radiation current in the plans. Thinking we may want to avoid Xeloda/Tykerb since it seems the only recruiting TDM-1 trial excludes those who have previously used Xel/Tyk. Would be a shame to disqualify from a trial if possible.
Thanks for the kind words, our family is thrilled so far to see the markers down nearly 98%!
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11-30-2010, 04:47 PM
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#34
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Senior Member
Join Date: Nov 2010
Location: PA
Posts: 297
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
Great News!!! Happy hoidays to you and family. Mary L
__________________
Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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12-06-2010, 08:35 AM
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#35
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
All this great news is awesome! Yes, you can!
__________________
"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.
"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)
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02-09-2011, 12:08 PM
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#36
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Senior Member
Join Date: Jul 2010
Posts: 34
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
Hi everyone, sorry for no recent updates, but returned to the office today after being out for the last few days doing updated scans... GREAT NEWS!
First PET/CT Aug 5
SUV 10.8
Size 3.7 x 3.2
Second PET/CT Sep 15
SUV 5.0
Size 2.3 x 2.0
Third PET/CT Dec 10
SUV 2.0
Size 1.3 x 0.4
Fourth PET/CT Feb 7 ***
SUV "Negative"
Size 7mm (residual scar?)
Tumor markers all "Normal", no PET activity... although the term wasn't used, this must mean "NED" (right?)
So after 9 cycles of TCH, it's time to go to 'only' Herceptin, and add the Tamoxifen.
There was a discussion about possibly entering the trial which randomized adding lapatanib (Tykerb) to Herceptin (no Xeloda). I'll check the other forms for discussions on that topic. If anyone reading this has insight, let us know.
Thank you for all the support the last 7 months.
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02-09-2011, 01:39 PM
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#37
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
Thanks for the update. Glad to hear your good news.
Amelia
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01-19-2012, 09:18 AM
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#38
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Senior Member
Join Date: Jul 2010
Posts: 34
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
It's been a while since I've last posted an update... but not for any other reason than life has returned to a level of normalcy.
My wife's last 13 months of scans, including a PET/CT, bone scan and brain MRI done in the last 30 days were all "normal".
So this single liver metastisis has decided it's had enough and doesn't care rear it's head anymore (knock on a giant Sycamore tree).
Happy new year to all.
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01-19-2012, 09:50 AM
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#39
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
Great to hear this news - I'm looking forward to the "same" update for the next 40 years or so, ok?
__________________
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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01-19-2012, 12:36 PM
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#40
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???
Great to hear this news. I remember your initial post very well especially how young she was with 2 small children. I hope she remains well forever.
Hugs
Ellie
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