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Old 07-15-2010, 03:24 PM   #1
Chelee
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It's back...

Monday I found out my cancer returned to my rt axilla. Had a nice 3 month chemo break...but now I'm thinking I should of hit it harder with Taxotere.

So far it's only in that same one node in rt axilla and no where else that we know of? (With exception of the one stable bone met on ilium.) Also my CA27.29 has been very reliable for me and they are only 15 right now which is good. So I will be going back down to UCLA tomorrow to see Dr. Hurvitz. She works closely with Dr. Slamon as most of you here probably know. I heard she has a couple trials in mind for me & I'm sure one is TDM-1...since that is what Dr. Slamon talked to me about on prior appts.

Seems it might have been a good idea the 1st time I recurred to axilla to have the one node surgically removed...then mop it up with chemo? (Although there is risk of lymphedema.) Now that the same node has recurred for a 2nd time...wouldn't that be a good option to just have it removed & biopsied? I realize I can ask this tomorrow...but was looking to hear first hand from anyone else here that might of had that done?

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 07-15-2010, 04:17 PM   #2
ElaineM
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Wink Re: It's back...

I am so sorry to hear it is back. However, I know you will come out swinging and do battle with the cancer once again. I think you are doing the right thing by seeing Dr. Hurvitz or Dr. Slamon. Take good care of yourself and hang in there. I already know you will keep putting one foot in front of the other no matter what.
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Old 07-15-2010, 06:03 PM   #3
Laurel
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Re: It's back...

I am so sorry the beast in back in that node, Chelee. I am not well versed on what to do when nodes are malignant, but it seems to me that taking that one out makes sense. I will be watching to see what some of the more experienced & knowledgeable members think. Good luck tomorrow. Please let us know what you discover. You are fortunate to be able to be in Dr. Slamon's care.
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Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
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Old 07-15-2010, 06:06 PM   #4
Cal-Gal
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Re: It's back...

Chelee,
so sorry to hear about this--but I know you will bounce back!!!
Hugs and Prayers
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DX: 11/08 Age: 53
Surgery: 1/09
Bilat Mastectomy, no reconstruction
ILC-4 tumors-1.7 cm,1.5 cm (2).8 cm
DCIS-11 cm
All tumors Grade 3
All tumors ER-0%/PR-0%
All tumors HER2+
IHC-all tumors Overexpression/borderline
FISH 2 tumors Her2-Negative
FISH 2 tumors Her2+ Equivocal
Stage I, 0/1 nodes
LVI-Indeterminate(treated as positive)
SPR Score 8/9
Ki-67 20%
BRCA genetic test 1/2=negative
Chemo: 6 rounds TAC Feb-June 2009 w/Neulasta
Herceptin: 6/12/09-6/4/10 52weeks
HNPCC genetic test: negative
Port Placement-9/23/09 Port Removal 6/25/10
Echo's every 3 months-All normal
2/09 Staging PET/CT showed 0.2 micronodule upper R lobe-lung-Onc does not think this is mets--
6/5/09 AND 10/09 CT scan 0.2 micronodule unchanged
1/10-PET/CT-uptake in nasopharynx-
1/10-MRI All normal
6/10-Bone Scan-clear
12/10-PET/CT-All Clear-NED
12/11-PET-All Clear-NED

12/12-PET-All Clear-NED
12/13-CT w/contrast Head, Torso-All Clear
12/14-CT w/contrast Head-All Clear
2/15-Core needle biopsy-R scar line

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Old 07-15-2010, 06:38 PM   #5
jellybean
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Re: It's back...

I am very sorry to hear this. I would consider having it removed, but I am not a doctor. I know someone locally who had a recurrence in a node (not sure if it was in the axilla) and she had it removed followed by radiation. She has mets as well, but everything else is stable.
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Old 07-15-2010, 06:38 PM   #6
Jackie07
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Re: It's back...

Chelee,

Sorry for the recurrence.

But you sounded so 'cool'! I'm sure the 'sucker' will be scared away by your coolness and soon be detroyed by the 'weapon of mass destruction' used by your doctors.

Sending good vibes your way.
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Old 07-15-2010, 06:46 PM   #7
Faith in Him
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Re: It's back...

Ugh! I wish it would just leave you alone.

I have a friend in the same situation. Her onc is leaving the node alone (no surgery) and putting her in a trial. I'm not sure which one. I hope you have a very successful meeting tomorrow with the docs and are back to NED soon.

Tonya
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DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
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Old 07-15-2010, 06:47 PM   #8
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Re: It's back...

Chelee - I'm so sorry you're having to deal with this again. I hope your doctor will be able to answer your question about removing the node.......seems like a logical step to me. May God's angels watch over you!
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Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
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Old 07-15-2010, 07:34 PM   #9
Rich66
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Re: It's back...

How's the leg? Are you getting around ok?
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Old 07-15-2010, 08:18 PM   #10
Chelee
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Re: It's back...

Thanks to all of you for the feedback/support. It means alot to me. Sometimes it seems once stage IV they don't like to take the surgical approach? But I am going to ask about that tomorrow. It's frustrating to have just one darn node misbehave & put a damper my summer. (But it will be sorry when I'm done!)

Rich, As to the leg...it's pretty good these days. The only pain I have in femur is due to the 10 days of radiation. (Rads is suppose to get rid of pain...not cause it.) But I get around rather well now thankfully. (No cane or walkers at present.)

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 07-15-2010, 08:42 PM   #11
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Re: It's back...

Chelee,

So not fair that you are having to deal with this again, but I know you will prevail. Keeping 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 07-16-2010, 03:46 AM   #12
Becky
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Re: It's back...

Chelee

I am not sure whether biopsy would be necessary again however, every treatment received could change things in theory. Ask the onc today. It would be super nice if you could get into the TDM-1 trial (with or without pertuzimab). Its just that the toxicity differences versus chemo is so different. That would be a great choice.

Keep the faith girlfriend. I will be thinking 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

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Old 07-16-2010, 05:42 AM   #13
tricia keegan
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Re: It's back...

Sorry you have this annoying node again Chelee, if they dont want to remove it maybe they could radiate it??
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
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Old 07-16-2010, 07:12 AM   #14
Pam P
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Re: It's back...

Chelee - Sorry to hear of this new recurrance. I trust you'll get good advice for best treatment when you see the onc. Hang in there - you'll conquer this too. Pam
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6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
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2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
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Old 07-16-2010, 12:12 PM   #15
lexigirl
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Re: It's back...

Oh Chelee, I am sorry. I am hopeful that whatever decision is made to get rid of the cancerous node will be the right one. Stupid cancer!

Hugs,
Lexi
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Old 07-16-2010, 12:44 PM   #16
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Re: It's back...

Chelee~
So sorry to hear the news. But you've got the guidance of a great onc to help you beat this back again. And you will.
I had a couple of supraclav nodes that recurred after gemzar, so the 2nd time around I had 7 weeks of rads. All clear there ever since.
I hope you have to the opportunity to enroll in a TDM1 trial.
This drug holds a lot of hope for all of us.

Keep the Faith~

Jessica
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Old 07-16-2010, 12:51 PM   #17
chrisy
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Re: It's back...

Sorry to hear it's sneaking back...but as my doctor has said to me in the past "it's just a little bit of disease". They're so funny

This is why it's a marathon not a sprint.

But you have the very top people on your team, you are in good hands.
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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.
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Old 07-16-2010, 03:29 PM   #18
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Re: It's back...

Chelee, Best of luck with your Drs appointment. Wow; you have the rock star of Oncologists. You are in the best of hands. I hope it goes well. I am routing for you to return to NED.
Kris....
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06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 07-16-2010, 04:24 PM   #19
bejuce
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Re: It's back...

Hi Chelee,

I'm sorry to hear about your recurrence, but glad you'll be seeing Dr. Hurvitz. I met her last month at a DoD peer review panel in DC and I was very impressed with her. I talked to her at length at dinner one night and she was very upbeat and positive about all the trials they have going on at UCLA. She told me that the cure rate for stage IV patients keeps going up and up. And she offered to put me on Dr. Slamon's schedule to see him this month or the next and discuss with him my future treatment plan. I loved her!

So, yes, Chelee, as the others above have said, keep the faith! We're all here cheering and praying for you.

Marcia
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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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Old 07-16-2010, 08:42 PM   #20
Lori R
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Re: It's back...

Cheelee,
I am glad you had a break from chemo but hate to hear that you are facing "life interrupted". The bad news just starts off a flurry of appointments and decision making.

Wow!!! What encouraging news from Marcia. Talk about rubbing elbows with the big guys. With all of the input from Jessica and others, there are so many options.

Praying for you during your decision process. Please keep us posted.

Lori
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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