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Old 11-21-2007, 04:14 PM   #1
MichelleH
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Unhappy PLEASE, I NEED MY SISTERS -Bad news just before the holidays.

Had a CT scan today because of some pain & pressure in the abdomen for the past week. The scan showed tumor(s) growth in the liver (old & new) and also in the bones. Can't believe Tykerb & Xeloda has stopped working for me already. I think I only felt good for about 2 mos. I started T/X in June. Doctor has said a few weeks ago that I was running out of options. I know there is still Carboplatin, Taxoterre (sp?) and Gemzar. Can anyone think of any other meds or procedures I might want to suggest to the doc. I would appreciate any suggestions and a lot of prayers.

Thank you.

I love you all.

Michelle
__________________
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 11-21-2007, 04:19 PM   #2
caya
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Dear Michelle,

I can't offer any treatment suggestions, but I'm sure some of the gals will. I will say prayers for you, and wish you and your family a happy Thanksgiving.

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 11-21-2007, 04:24 PM   #3
swanky
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Michelle - have you been tested for BRCA? If you are positive then you qualify for the PARP trials that are cropping up. When I signed up for the trial they did the test for free and I had my results within 2 weeks.

Sorry for the crappy news just before thanksgiving! PM me if you have any questions!

Hugs!
Leea
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Age 33 at dx - 9/15/06
L breast, Invasive solid DC w/ extensive DCIS, Grade 3, ER/PR negative/ HER2 neu positive (barely)
-AC DD, taxotere, taxol w/ herceptin
-Bi lat 1/18/07, multiple foci of IDC admixed with DCIS, IDC varied from 0.1, 0.5, and up to 1.6 cm, 1/19 + nodes
Expanders in place
Pregnant when dx
Mom to 4 beautiful kiddos (boys: 5 and 14 mos, girls: 17 and 3)

Recurrence in neck lymph node and 8mm spot in L breast above expander, herceptin stopped
BRCA 1 positive
Clinical trial since 7/23/07 (PARP INHIBITOR)-NED for 9 months, supraclavicle node popped back up,..so we cut it out! Full neck dissection - only 1 positive node ER/PR negative and now HER2 negative
Currently on Xeloda and NED
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Old 11-21-2007, 04:24 PM   #4
tousled1
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Michelle,

Sorry to hear your news and I know that around the Holiday season the last thing any of us wants is bad news. I'm not sure if you've tried the Taxene drugs yet - Taxatere, Taxol, and Abraxane. I had good results with Taxatere and am now having good results with Taxol. I'm also taking Carboplatin. Don't worry you are not running out of options -- there are plenty more chemo combos out there. I think it's just a matter of finding out which one and in what combination will work for you. I'll keep you in my prayers.
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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 11-21-2007, 04:49 PM   #5
lexigirl
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Michelle,

Yes, please don't lose hope. The right combination of tx needs to be found to smash those cancer cells to smithereens! I am sorry that you received this news, but I know that there will be a tx to help.

Hugs and Prayers,
Lexi
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Old 11-21-2007, 06:21 PM   #6
Julie2
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hsp

Hi Michelle,

The heat shock protien(hsp) seems to be promising. Please se StephN's thread about it. Please don't loose courage.Best wishes for you.

Julie
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Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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Old 11-21-2007, 06:34 PM   #7
Becky
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Besides Abraxane and Taxotere (which have great synergistic effects with Herceptin), there is also Avastin (inhibits blood vessel growth within the tumor). Also, have you ever considered getting your tumor tested for Her1 (aka EGFR). There are many oral drugs targeted against Her 1 (Taresva, Erivista etc).

You are NOT out of options yet!! Keep the faith.

Love and a big hug.
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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 11-21-2007, 06:42 PM   #8
Joe
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Michele,
You may wish to consider the Herceptin-DM1 trial. It is being discussed in the clinical trials section of this board.

Regards
Joe
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Old 11-21-2007, 06:49 PM   #9
dhealey
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Michelle, Sorry for your bad news, please do not give up the fight or hope. I know there is a combination out there to help you. I will be saying special prayers for you and your family
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Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 11-21-2007, 06:55 PM   #10
KellyA
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Michelle,

I am so sorry that you have gotten disappointing news before the holidays. They're are many more combinations of meds to try- please don't lose hope. You and your family are in my prayers.

Love, Kelly
__________________
dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED

"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."

-Eleanor Roosevelt

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Old 11-21-2007, 07:04 PM   #11
Mary Anne in TX
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Hi Michelle!
What rotten news! But there are more options. Take a few days to be with your family and friends at Thanksgiving and then write those who suggested options that you can try and gather more info. You fight, girl! You're one of the warrior good guys! I'll be praying for you! God bless you, mary anne
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MA in TX.
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!
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Old 11-22-2007, 08:41 PM   #12
Faith in Him
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Michelle.

Don't give up hope. I'm sure the women here will come up with some great suggestions. Please know that I am praying hard for you.

Hugs
__________________
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
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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Old 11-23-2007, 10:25 AM   #13
SoCalGal
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clinical trial info

Michele,
Just had a consult with Dr Linea Chap in Santa Monica, CA (Lee Rosen is her partner - they are pretty well known - from UCLA) and she told me about a clinical trial they are running using this KOS1022, herceptin and adding in something else - a chemo - for me she suggested doxel.

She did not do a hard sell, or make a bunch of promises and I haven't even researched it or finished getting opinions from the others, but thought I'd share what she said so far, in case you think it could help you. I did a quick google search, the drug is made by KOSAN.

I cut and pasted a couple of things below. --Flori


http://www.pharmadd.com/archives/Nov...ck_and_Awe.asp

The company also has an on-going Phase II trial testing tanespimycin in combination with Herceptin in Her2/neu-positive breast cancer.
http://www.fightprostatecancer.org/site/News2?id=5379&page=NewsArticle
But the early results were another boon to Kosan, which has been conducting clinical trials of its 17-AAG formulation called KOS-953 and a next-generation Hsp90 inhibitor called KOS-1022 with the National Cancer Institute, its key development partner.
__________________
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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Old 11-23-2007, 10:43 AM   #14
lilyecuadorian
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Michel and Flori , sometimes is a sad news like progression or others worst but in the same time there so much hope for us ...this clinical trail give me more hope and I sure it will to My dear Michele and it is more clinical trials and drugs that we can try ..too many I'm on Trastuzumab-MCC-DM1 and I will have some news this Dec 13 ...so just keep the fight and try other options ....but Don't never give up ...
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Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 11-23-2007, 06:46 PM   #15
Joan M
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Michelle,

I'm sorry to hear about your news, but other options are out there.

You should mention those mentioned here to your oncologist.

Besides that, have you thought about getting a second opinion?

Can you get yourself to U Mich, for example?

You are in my prayers.
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 11-23-2007, 08:37 PM   #16
Adriana Mangus
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So sorry

Dear Michelle: I'm sorry to hear the news about the liver. I will keep you in my prayers...Am sure there is something the doctors can give you to kick the cancer out of your liver...Other sisters in this site have had it and are clear now... Stay positive. Hugs
__________________
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 11-23-2007, 08:45 PM   #17
Adriana Mangus
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Posts: 668
Hi

Dear Flori:

Nice pic! I should have though of that before my husband's stroke...I have not posted in a long time, because of husband's medical issues. He's reciving physical, occupational and speech therapy at a facility near the house- less than five miles, so I get to see him everyday, sometimes twice a day. He will be coming home hopefully soon, he's progressing on these therapies. I miss him terribly, he was allowed to come home yesterday, just for the day to celebrate Thanksgiving with my daughter and I. It was fun. Nice to see you are doing great...Hugs..


P.S. La La land??? Did you decide to go incognito after Nicole's, Britney's and all those scandalous creatures who live up there?? :-)
__________________
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 11-23-2007, 10:43 PM   #18
dajawood
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Michelle,
Boy, your message hit home with me. I also was dx with mets to liver and bones in Aapril 07. MD Anderson prescribed Taxotere/Herceptin. It worked for a few months and I had heck on the Taxotere. The Herceptin was not working so the doc changed in October to Herceptin and a clinical trial drug to jump-start it. The tests showed that there was progress...but for how long? Sorry, I don't have any suggestions for you being a "newbee" to the cancer world. I have read that Tykerb and Xeloda (sp?) has had some success. I am sure I will be in your shoes before too much longer wondering what next? You are in my prayers.
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3/2/07: DX invasive ductal carcinoma
Lumpectomy 2x1.5x1.5 cm. tumor
3/9/07: 2/2 sentinel node+ w/ 2.3x1.7x1 cm.
6/30+ auxillary nodes
3/29/07: mets to liver, bones, lungs
Liver mets 40%+
3/29/07: FISH test: ER/PR- and HER-2+++
4/07 - 9/07: Taxotere and Herceptin
9/07 - current: Herceptin and clinical trial
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Old 11-23-2007, 10:54 PM   #19
hutchibk
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At the Metastatic Breast Cancer Conference at MD Anderson last weekend, they showed very compelling evidence about the superior efficacy of Abraxane over Taxol (both are paclitaxel, but Abraxane is suspended in solvent-free nanoparticle including Albumen. It makes it less toxic and more bio-available to the body.)

This article is from 2005, but it echos what the MDA docs were saying last weekend. http://professional.cancerconsultant....aspx?id=35121

They also talked alot about Ixempra (ixabepilone) and it's potential...
http://www.medicalnewstoday.com/articles/85726.php

Maybe ask your doc about these options...
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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."

Last edited by hutchibk; 11-23-2007 at 10:55 PM.. Reason: add website link
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Old 11-24-2007, 09:39 AM   #20
MichelleH
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Post Thank you all.

I just want to thank you all for your suggestions, prayers and encouragement. I will take into the doc's off the list of drugs suggested by all of you lovely people. I think that a second opinion would also be another great idea. U of M is about a 4 hr drive south from home but would be well worth the drive.
I have not given up. I have always told my husband that I will fight till there is no fight left in me. And all I have to do to remind myself of this is just look into the eyes of my small children and know that they need me around for a very long time.
So I say thank you to Joe and all of you lovely ladies for responding to my post and my time of need. I love you all.

Love and big hugs right back,

Michelle,
__________________
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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