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Old 01-29-2010, 03:57 PM   #1
Sheila
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Scanxiety Confirmed, Progression Shown

I havent posted, but was taken off Tykerb a few days ago...,my CT's 3 weeks ago showed progression, which was obvious to me in my armpit, neck and chest...losing my voice again and coughing which they felt was the neck nodes on the vocal cords...another round of CT's yesterday showed progression even more pronounced in the past 3 weeks, with a mass now encasing and causing obstruction to the left Pulmonary artery and left bronchus, which explains the coughing and shortness of breath. I have also dropped almost 10 pounds in the past 6 weeks. They plan on adding Avastin next week (waiting for approval) to the Herceptin since I did well before on it except for the B/P issues and the nosebleeds....I really felt like the Tykerb/Herceptin was the magic bullet for me....and might have been if I hadn't had to wait and fight for 2 months to get it. I am really bummed over this news...trying so hard to stay positive, but getting so tired of this roller coaster. At this point I feel as though I need a hat trick!
Keep me in your prayers!
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Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin

Last edited by Sheila; 01-29-2010 at 04:00 PM..
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Old 01-29-2010, 04:05 PM   #2
mmoons
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Re: Scanxiety Confirmed, Progression Shown

Oh Sheila....that stinks! I am so sorry you didn't get better news.

Everytime I see one of your kind, supportive posts for others I always think of how beautiful you are in your picture. Clearly you are as beautiful inside as out - the way you are always "there" for all of us.

Sending you lots of prayers for the fortitude to keep kicking this cancer.

Hugs,
Maureen
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My loves

IDC & DCIS, HER2+++ Diagnosis: October 1, 2008
  • Tumor: 6.8 centimeters, never showed on mammograms
  • ER-/PR-
  • November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
  • Stage IIIc
  • Lapatinib Clinical Trial start: November, 2008
  • Surgery: May 5, 2009
  • Started Herceptin: May 19, 2009
  • Started Radiation (33 rounds): June 10, 2009
  • September 2009: Moved to Michigan to be closer to family
  • 12/09 - still on Herceptin until May 2010
  • August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
Blog: http://moonsfamily.blogspot.com
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Old 01-29-2010, 04:11 PM   #3
Ellie F
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Re: Scanxiety Confirmed, Progression Shown

Oh Sheila
So sorry to hear this news. What about T-DM1? Would this be an option still?? Thinking about you. Please remember you have got on top of this before and you will again.
Love Ellie
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Old 01-29-2010, 04:12 PM   #4
Jackie07
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Re: Scanxiety Confirmed, Progression Shown

Sheila,

Sorry for the set back. We'll pray that you get Avastin soon and cut off the blood supply of those cancer cells - choke them to death.

Meanwhile, please rest well and get ready for the next battle - we are all behind you.
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Old 01-29-2010, 04:12 PM   #5
Bill
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Re: Scanxiety Confirmed, Progression Shown

I'm sorry to hear this, Sheila. You will be in my prayers and I hope the Avastin is approved quickly and does the trick. You keep in touch. "Don't make me come up there!" Love, Bill
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Old 01-29-2010, 04:41 PM   #6
WomanofSteel
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Re: Scanxiety Confirmed, Progression Shown

Sheila, Sheila, I am so very sorry. I know how frustrating this is. It seems like we have almost exactly the same issues. I just started on tykerb, xeloda. Hopefully it'll do something for me. I hope this little avastin tweek does it for you. Hang in there honey!
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dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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Old 01-29-2010, 05:32 PM   #7
Carolyns
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Re: Scanxiety Confirmed, Progression Shown

Dear Sheila,

I am sorry to hear your news. I know that it is so tough to hang on during the down portions of this roller coaster ride... but when the news is new ... that it when I usually feel it as the lowest point. I guess we have to feel these lows because they are real and then get back up and lace up our gloves to go another round. I know I personally had to go buy a new Coach hand bag (to replace the $26 dollar bag I have been toting around for the last year or so) after I got a plan.

I wish there was something we could do for each other to take away the pain of these let downs. A magic wand or some fairy dust.... Thinking of you and praying for you.

Carolyn
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Old 01-29-2010, 05:45 PM   #8
Midwest Alice
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Re: Scanxiety Confirmed, Progression Shown

Hi Sheila, I am so sorry to hear this news. Keep strong the Avasin next week will get you back to kicking it. I am thinking of you and praying for the Avasin to do the trick.

Hugs my friend, Alice
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04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 01-29-2010, 06:16 PM   #9
Mary Jo
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Re: Scanxiety Confirmed, Progression Shown

Dear Sheila....I am so sorry to hear this. You have my prayers....most definitely and pray that Avastin is approved quickly for you.

The roller coaster of emotions has to be so hard to deal with. Please know I care......and I pray God's Peace to hold you at this time.

Love and gentle hugs...

Mary Jo
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Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

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Old 01-29-2010, 06:17 PM   #10
chrisy
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Re: Scanxiety Confirmed, Progression Shown

Sheila,
You already know what my one-word reaction was. I forgot, Brenda would have put it on a - - - -stick.

Yes, you did well on the Avastin, you stopped it for a break, not because it failed. So it may still be able to pack a wallop for you.

I think at this point your insurance co should have learned who they are messin' with, so hopefully that will go smoothly.

Otherwise, Bill might come up there.

Hang in there, my friend.
Chris
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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 01-29-2010, 06:25 PM   #11
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Re: Scanxiety Confirmed, Progression Shown

Well $@$*!)(*$_! for lack of better words. I know how you feel about tiring of the rollercoaster but hej, don't give up on it! You've come too far. Keeping you in my prayers!
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4/09 suspicious lump in left breast
5/09 biopsi lead to diagnosis ER/PR -
Her2+.Grade 3,full masectomy left breast,sentinel nodes clear,Stage 1
6/09 Adriamycin + Cytoxan 4 treatments (every 3 weeks) followed by Taxol + Herceptin, 1 treatment weekly for 12 weeks, followed by Herceptin for 40 weeks
MRI Brain 4/10 clear
CT Body 4/10 clear
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Old 01-29-2010, 06:54 PM   #12
Becky
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Re: Scanxiety Confirmed, Progression Shown

Oh Sheila. Maybe adding something to the Tykerb/Herceptin might do the job too. I am thinking all about you.
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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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Old 01-29-2010, 07:06 PM   #13
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Re: Scanxiety Confirmed, Progression Shown

Sheila, I'm so sorry you are having to deal with this plus the added issues of insurance. Please know I will keep you in my thoughts and prayers.
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dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 01-29-2010, 07:40 PM   #14
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Re: Scanxiety Confirmed, Progression Shown

Dear Sheila,

I'm so sorry to hear this. Your posts always bring me hope. I haven't been on the board that long but I know you are one tough cookie and you will fight this like the warrior you are.

I will be keeping you in my thoughts & prayers.

Sending warm fuzzies,
Vicky
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Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 01-29-2010, 08:21 PM   #15
Barbara H.
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Re: Scanxiety Confirmed, Progression Shown

Hi Sheila,
I am so sorry to hear this. You were so helpful to me. Perhaps Avastin will work at least long enough until T-DM1 gets approved. Also, there are new trials coming out with targeted therapies. You might qualify since you have measurable disease. Please know that you are in my thoughts.
Barbara H.
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Old 01-29-2010, 08:24 PM   #16
caya
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Re: Scanxiety Confirmed, Progression Shown

Sorry to hear this Sheila - no wonder you feel exhausted. Hopefully the Avastin will be the magic bullet for you...

Keep fighting valiant warrior woman!!

(and eat some chocolate, it's good for you!)

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 01-29-2010, 09:04 PM   #17
ElaineM
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Wink Re: Scanxiety Confirmed, Progression Shown

I am sorry to read your news. Please keep pushing the docs, insurance company and whoever else you need to push to get the Avastin and whatever else might help.
I hope you get something to help you with the symptoms until you get the medicines you need. Take good care of yourself and keep putting one foot in front of the other.
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12 years and counting
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Old 01-29-2010, 10:08 PM   #18
StephN
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Re: Scanxiety Confirmed, Progression Shown

Well, girlfriend, you know how I feel about this news. I know you were trying to spare us without adding to the other tough-to-take news we have been experiencing. As well as waiting for the new scans to tell the new story.

Hard to figure why the Tykerb did not do better. Would your onc be able to get Neratinib for you? Seems like the Avastin could knock down the tumors and pave the way for some new treatments. That will be my new mantra.

{{Big hugs to you.}}
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 01-30-2010, 03:02 AM   #19
Chelee
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Re: Scanxiety Confirmed, Progression Shown

Shelia, Things started out so good for you on this combo...I can only imagine how your feeling about now. But gosh darn it all...I'm so sorry you have to deal with this. I will be praying that this leads you into a better direction. Weren't you on a wait list for TDM1? I hope that is a real possiblity...or as Steph mentioned, seeing if you could get on Neratinib trial. I feel so bad for you...it's been one fight after another for you. It seriously makes me angry that you have to deal with this. But I will continue to keep you in my thoughts and prayers that something will work it's magic. Sending you lots of positive energy and love your way.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 01-30-2010, 06:09 AM   #20
Mary Anne in TX
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Re: Scanxiety Confirmed, Progression Shown

Sheila, you have my prayers and love for your upcoming battle. I am very sorry that you must take up yet another fight. I'm believing BIG for quick and positive results for your treatment. Much love to you, ma
__________________
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Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
Mary Anne in TX is offline   Reply With Quote
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