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Old 06-20-2007, 06:46 PM   #1
Esther
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MRI Update---Brain mets

I went in to Cedars-Sinai today for my first MRI post my March 5 Gamma Knife for a 4mm lesion in my frontal lobe, and fractionated radiation treatments that ended April 15 for a 1mm lesion in my brain stem, as well as the surgery on March 7 to remove a lesion in my cerebellum.

Whew....I was ready for some good news, though not so sure what to expect as the X-Knife I had last year on the lesion on my cerebellum did not work, making surgery necessary this year.

I just received a call from the neuro-surgeons office, the lesion on my frontal lobe is gone! The lesion on my brain stem is gone! The area around my surgery in the cerebellum shows all healthy tissue, and no new lesions anywhere!

I wonder if the Tykerb gave the treatments a kick to produce better results so quickly!!! I am so excited, this is beyond what I was hoping for! So for now, my brain mets are NED!!!! Yahoo!!!

I am dancing and singing in Southern California
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Old 06-20-2007, 06:48 PM   #2
tousled1
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Esther,

That is the best news I've heard for a long time. Congratulatins! Celebrate, celebrate, celebrate!
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Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 06-20-2007, 07:00 PM   #3
Bev
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Amazing! I'm happy for you. Just keep on celebrating. Bev
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Old 06-20-2007, 07:32 PM   #4
Carolyns
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Hi Esther,

Yahoo!!!! That is just terrific news! I am so happy for you.

Love, Hope, and Peace,

Carolyns
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Old 06-20-2007, 07:42 PM   #5
MichelleH
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Congratulations! You are amazing, you give people like myself hope and the will to keep fighting!
May I ask are you on Herceptin along with Tykerb/Xeloda?

Go celebrate, you deserve it!
Love,
Michelle
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Sept. 2003- 5cm tumor in left breast Her2+ Er- Pr- grade 3,
Mastectomy & 11 nodes removed, all negative.
4 rounds A/C + 12 wky Taxol
25 rads
Dec 2006- recurrence Stage IV (diagnosed 3 days before Christmas!) Lymph nodes in chest, liver, 3 ribs
January 2007- 3 tri wkly rounds of Taxol/Herceptin
Response to lymph nodes in chest, but several more bone mets (skull, shoulders, more ribs, femur, several on spine), liver tumors still growing.
March 2007- 8 wkly rounds of Navelbine/Herceptin/ every 4th wk Zometa
Lymph nodes in chest look great, but more bone mets (of course!), Clavicles, hips, and sacrum (above tail bone) to add to the list. Liver mets still growing.
June 5- started Tykerb/Xeloda

Aug 14- Scans are showing great progress! Tumor shrinkage and bones are healing!

Nov 21 CT scan shows tumor growth in liver & bones next Doc appt on 11-27

Dire need of a lot of prayers and a miracle.
Stay at home mom, 5 yr old girl & 8 yr old boy.
Wife of loving husband
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Old 06-20-2007, 07:51 PM   #6
Vanessa
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Great news!!!!
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Old 06-20-2007, 08:35 PM   #7
Odette
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Could not be Happier!

Esther,

I was really worried as I opened your thread, thinking oh no, she may have progression, what then?

Now this is the best news! I have tears in my eyes with happiness.

Keep dancing with Ned Esther!
I'll celebrate with a dance too!

Odette
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May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment

'One does not get to choose one's adventures'

I'm experimenting with my diet, using green tea, flax seed curry and olive oil

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Old 06-20-2007, 09:05 PM   #8
Esther
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Michelle, I was on Tykerb, Xeloda and Herceptin for the first 6 weeks I was on Tykerb. I had been on Herceptin for 3 1/2 years. After we got the initial results of my CA 27-29, which plummeted down from 390 to 90, my onc decided to drop the Herceptin.

His thinking was that it would be easier on my heart that way. I was hesitant to drop the herceptin, but decided to see what happened. So far the Tykerb/Xeloda combination is still working great.

Thanks Odette and everyone! I had tears of joy and happiness when I got off the phone this evening. I love the fact that Cedars does not make me wait for results, but gets me the MRI results within hours of the test.

We're all thinking it's the Tykerb making the difference. The neurosurgeon was recommending WBR in March in addition to the Gamma Knife and fractionated rads, because I had 2 new lesions show up within a month of each other, but I advocated for giving the Tykerb a chance. I'm so glad I did!!!
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Old 06-20-2007, 09:37 PM   #9
Adriana Mangus
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Thumbs up Allright Esther!!

Dear Esther:

I'm so happy that am crying of joy for you ; for we need to hear news like yours more often. You did listen to your instincts
regarding which treatment to follow, it paid off big time.

Thank you Lord for keeping Esther near your heart, please continue showering her with your infinite Mercy, Love and Compassion.

Can't wait to meet you @ the Carlsbad Inn, we'll celebrate BIG!!!

Love,

Addie
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 06-20-2007, 09:48 PM   #10
Adriana Mangus
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Praying for you

Dear Michelle:

I will definitely keep you in my prayers, you are so young!!
Please take care of yourself. What veggies/fruits do you grow @ home?

My husband is from Flint, (born in Grand Blanc), he tells me stories about his mother growing strawberries, corn, potatoes, etc. He has fond memories of picking from the vast garden his own corn for dinner, or fruit for bkfst. So cool....!
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 06-20-2007, 09:58 PM   #11
StephN
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Thumbs up Fabulous news!

DEar Esther -
I was SO OVERJOYED to read your good news. And I also vote for not making patients wait for their results - whether good or not so good.

You have shown yourself to be a responder to certain drugs when your cancer is running rampent. What a great result you have had from the Tykerb as well. You had a good result from a Xeloda combination in the past and I had every reason to believe that it would work this time as well.

Go for a spin in your red car and wear red as well! Then don't forget that bucket of paint for the town!
__________________
"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 06-20-2007, 10:19 PM   #12
chrisy
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OH MY GOSH!!!!!
What fantastic news! I can't hear you dancing and singing out because MY woo-hooing over your good news is drowning it out! What a fabulous turnaround from last year. You were so ready for some good news - and this just couldn't be better! I'm so happy for you. And Michelle is right - hearing good news like this gives us all hope. Thank you so much for sharing!

Woo hoo woo hoo
love chris
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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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Old 06-21-2007, 01:46 AM   #13
Lala
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Esther

I am So Happy for you! That is Wonderful News!

Dance Sister Dance!!

Hugs to you
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Lala
DX Fall05 Stage 4 er+ pr+ her2+ liver and bone mets
DX Fall06 Brain mets, Brain mets gone Spring 2007
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Old 06-21-2007, 03:21 AM   #14
saleboat
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What a relief-- so happy for your good news. Thanks for sharing it with all of us.

Jen
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dx 4/05 @ 34 y.o.
Stage IIIC, ER+ (90%)/PR+ (95%)/HER2+ (IHC 3+)
lumpectomy-- 2.5 cm 15+/37 nodes
(IVF in between surgery and chemo)
tx dd A/C, followed by dd Taxol & Herceptin
30 rads (or was it 35?)
Finished Herceptin on 7/24/06
Tamox
livingcured.blogspot.com

"Keep your face to the sunshine and you cannot see the shadow." -- Helen Keller
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Old 06-21-2007, 04:46 AM   #15
dhealey
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what wonderful news! Gives the rest of us great hope. Keep on fighting!
Dhealey in N.C.
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Old 06-21-2007, 07:58 AM   #16
MichelleH
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Smile I'm doing the happy dance for you!

Esther,
My doc took me off of Herceptin before starting Tykerb/Xeloda. He said all three had too many side effects. I'm guessing the heart thing was his big concern. I was hoping to stay on the Herceptin even though it only worked on the lymph nodes in the chest, it gave me back my voice and took away the cough. Hopefully the Tykerb/ Xeloda will work on everything.
Again, I'm so happy for you on your report!
Hugs
Michelle

Adriana, I sent you a privite message, nothing too private, just don't want to take away from Esther's thunder.
__________________
Sept. 2003- 5cm tumor in left breast Her2+ Er- Pr- grade 3,
Mastectomy & 11 nodes removed, all negative.
4 rounds A/C + 12 wky Taxol
25 rads
Dec 2006- recurrence Stage IV (diagnosed 3 days before Christmas!) Lymph nodes in chest, liver, 3 ribs
January 2007- 3 tri wkly rounds of Taxol/Herceptin
Response to lymph nodes in chest, but several more bone mets (skull, shoulders, more ribs, femur, several on spine), liver tumors still growing.
March 2007- 8 wkly rounds of Navelbine/Herceptin/ every 4th wk Zometa
Lymph nodes in chest look great, but more bone mets (of course!), Clavicles, hips, and sacrum (above tail bone) to add to the list. Liver mets still growing.
June 5- started Tykerb/Xeloda

Aug 14- Scans are showing great progress! Tumor shrinkage and bones are healing!

Nov 21 CT scan shows tumor growth in liver & bones next Doc appt on 11-27

Dire need of a lot of prayers and a miracle.
Stay at home mom, 5 yr old girl & 8 yr old boy.
Wife of loving husband
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Old 06-21-2007, 08:40 AM   #17
Joy
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grinning my head off

for you and your news!!! What a great phone call, what a great day for you and thank you for sharing all of this with us as it really, really helps!!!! You are awesome!
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with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 06-21-2007, 10:51 AM   #18
kacey
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Talking

Ester---dance, sing and celebrate!!!I was nervous about opening your post, but what sensational news. You DO give us all hope so thanks for sharing. Love and prayers Kacey
__________________
dx 9-13-05 MRM (lt)on 9-19-05
IDC stage llb grade 2 3/24 nodes+
ER/PR- Her2+++
Groshong placed 10-13-05 and chemo started
TCH x6 and continue Herceptin for one year every 3 wks
Rads x 33 (at the end of chemo) finished 4-01-06
20 months NED
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Old 06-21-2007, 12:45 PM   #19
Chelee
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Esther, I am beyond THRILLED for you! That is such exciting news. You couldn't possible ask for better results then that. I love hearing things like this because it gives us all so much hope and encouragment which you know we all need.
I don't know if the Tykerb helped...but it sure didn't hurt. lol Something worked rather well. I sure hope you were sitting down when that call came in...could of been dangerous if you were standing up. And since you live in Southern California NOW I know why the ground WAS rocking and rolling. At first I thought it was just a earthquake...but it was no doubt you jumping up and down dancing & singing. That explains that! LOL Wooo Hooo...way to go girl.

Big Congratulations! This is truly something to CELEBRATE about. What are you waiting for...get going...you have places to go, people to see & LOTS of fun to be had.

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 06-21-2007, 02:12 PM   #20
hutchibk
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Wonderful news Esther! I advocated also to give Tykerb/Xeloda a chance before we did any type of radiation, especially WBR. We did my MRI 2 weeks ago (6 weeks after starting Ty/Xel) and there were NO NEW punctates, none of the existing spots we knew about had grown, and one of the 9mm spots (in the cerebellum) was less enhanced, indicating that maybe it is disolving away. So, we have decided that the Ty/Xel deserves more of a chance to see what it can do before we do any kind of rads, even targeted. We will scan again in 6 weeks. Yippee for Ty/Xel!!
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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