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Old 06-26-2009, 01:50 PM   #21
Barbara H.
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Thoughts with you and your family

Hi Eric,
You have fought so hard for Caryn and I have been so impressed with your posts and how they reflected your loving care for her and your children. My heart goes out to you and your family. Please know that all of you are continually in my thoughts.
Barbara H.
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Old 06-26-2009, 02:19 PM   #22
AbbyDawg
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Dear Eric ~

Your battle certainly has not been lost. You and Caryn have fought with the dignity and grace of legends past. Cancer didn't win, the battle isn't lost -- but perhaps it is time for Caryn to move on to her life of peace and wait for you.

Her pain ends but her peace begins. Your pain becomes deeper but your life has been richer for the loving and the fighting together.
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Old 06-26-2009, 02:52 PM   #23
WomanofSteel
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Eric, I echo the words of Abbydawg. I have no miracle cure or great words of wisdom. I just offer my prayers to you and your family and Caryn. You are truly a blessing to her.
__________________
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 06-26-2009, 03:17 PM   #24
Les
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Thinking and praying for you and Caryn, I am so sorry that you have to go through this. It does suck!!!!!!!!
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Old 06-26-2009, 04:33 PM   #25
charlotte
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Please add my prayers to the list.. Please , also take care of yourself..Charlotte
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Old 06-26-2009, 05:29 PM   #26
sassy
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Eric,

I am holding Caryn, you and your family in my heart and prayers. May God give you comfort, strength, peace and understanding.
__________________
Rhonda (Sassy)
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 06-26-2009, 05:32 PM   #27
StephN
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Dear Eric -

I know how hard you have fought to hold Caryn up and help her keep going. She has done so much already, but the cancer inches forward anyway.

If it were my case, I would leave it up to Caryn whether there is anything more she wants to try. If she is in the hospital, it seems that no study drug could be adminstered there, unless it is actually a cancer center.

My prayers are fervent that she is comfortable and comforted. That goes for you and the children. Words just can't describe the heartache you all have, and the sorrow we feel is only a penny's worth.
__________________
"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 06-26-2009, 05:47 PM   #28
Ceesun
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I am thinking of you and yours. Ceesun
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Old 06-26-2009, 05:47 PM   #29
Tom
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Public Wyeth Drug Announcement This Month

Eric,

I saw Joe's mention of a new drug called neratinib on this thread, and I found an article about it online. Wyeth is a drug company here in PA. It looked promising in it's trials so far. It seems that it acts on intracellular end of the receptors of the HER2 cell, whereas Herceptin acts on the extracellular end. I don't know if Caryn would qualify for their upcoming Phase III trial. Here's the link:

http://www.medicalnewstoday.com/articles/152211.php

Tom
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Old 06-26-2009, 06:03 PM   #30
RhondaH
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Unhappy Eric...

no medical advise, but LOTS of prayers Take care and God bless.
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Rhonda

Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)

2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)


" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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Old 06-26-2009, 06:08 PM   #31
'lizbeth
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Eric,

Your love for Caryn is an incredible gift. We all share your pain in this terribly difficult time. I will add my prayers to the rest for a miracle for your family. That God will send the right person with the expertise to give your Caryn another chance.

'lizbeth
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 06-26-2009, 06:23 PM   #32
lkc Gumby
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I AM SO SORRY TO HEAR OF THIS. I pray that Caryn is at peace and comfortable., You are all im my prayers.
__________________
Linda

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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Old 06-26-2009, 07:27 PM   #33
Cal-Gal
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Eric,

A love like the two of you share, transcends all time and space.

I will pray for a miracle for Caryn.
__________________
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 06-26-2009, 08:17 PM   #34
Paty
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Eric,

I am praying for you both. Hang in there and do not let God´s hand go.

Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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Old 06-26-2009, 08:35 PM   #35
mmoons
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Praying for you both, Eric
__________________
Maureen


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 06-26-2009, 08:40 PM   #36
Tom
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Wyeth Phase III Clinical Trial for Neratinib

Eric,

Here is the link and full text of Wyeth's Phase III study that is now enrolling patients all over the country. Make sure to click on the link further down the webpage that says "Show 111 Study Locations", to find the site nearest to you.

http://clinicaltrials.gov/show/NCT00777101


Study Evaluating Neratinib vs Lapatinib Plus Capecitabine for ErbB2 Positive Advanced Breast Cancer
This study is currently recruiting participants.
Verified by Wyeth, June 2009
First Received: October 21, 2008 Last Updated: June 16, 2009 History of Changes
Sponsored by: Wyeth
Information provided by: WyethClinicalTrials.gov Identifier: NCT00777101
Purpose This is a study of an experimental drug (neratinib) versus a combination of drugs (lapatinib and capecitabine) in women who have erbB-2 (HER-2) positive metastatic or locally advanced breast cancer. The goal of this study is to compare the two regimens in shrinking tumors and extending the lives of women with erbB2 (HER2) positive breast cancer. The study will also compare the safety of the two regimens and to compare quality of life of patients taking the two regimens.


Condition Intervention Phase Advanced Breast Cancer
Breast Cancer
Drug: Neratinib
Drug: Lapatinib plus Capecitabine
Phase III


Study Type:InterventionalStudy Design:Treatment, Randomized, Open Label, Parallel Assignment, Safety/Efficacy StudyOfficial Title:A Phase 3 Randomized Open-Label Study of Neratinib Versus Lapatinib Plus Capecitabine for the Treatment of ErbB-2 Positive Locally Advanced or Metastatic Breast Cancer
Resource links provided by NLM:

Genetics Home Reference related topics: breast cancer
MedlinePlus related topics: Breast Cancer Cancer
Drug Information available for: Capecitabine Lapatinib Lapatinib Ditosylate HKI-272
U.S. FDA Resources


Further study details as provided by Wyeth:


Primary Outcome Measures:
  • Progression Free Survival [ Time Frame: 16 Week ] [ Designated as safety issue: No ]

Secondary Outcome Measures:
  • Common Terminology Criteria for Adverse Events [CTCAE] V3 [ Time Frame: Subject's duration on active portion of the study. ] [ Designated as safety issue: Yes ]

Estimated Enrollment:1000Study Start Date:November 2008Estimated Study Completion Date:November 2013Estimated Primary Completion Date:November 2013 (Final data collection date for primary outcome measure)
Arms Assigned Interventions A: Experimental Neratinib

Drug: Neratinib B: Active Comparator Lapatinib plus Capecitabine
Drug: Lapatinib plus Capecitabine




Eligibility

Ages Eligible for Study: 18 Years and olderGenders Eligible for Study: FemaleAccepts Healthy Volunteers: NoCriteria

Potential subjects should have/be:
  • Stage IIIB, IIIC, or IV erbB2 (HER2) positive breast cancer
  • Prior use of Herceptin (trastuzumab), an anthracycline, and a taxane
  • Adequate cardiac and renal function
Potential subjects should not have:
  • More than 2 prior Herceptin (trastuzumab) regimens or prior use of Xeloda (capecitabine) and / or Tykerb (lapatinib) [Tyverb]
  • Bone or skin as the only site of disease
  • Active central nervous system metastases (subjects should be stable and off anticonvulsants and steroids)
  • Sigificant gastrointestinal disorder with diarrhea as major symptom
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Old 06-26-2009, 08:50 PM   #37
schoolteacher
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Eric,

I am so sorry to hear about Karen. I will be praying for her, you, and your children.

Amelia
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Old 06-26-2009, 08:56 PM   #38
karenann
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Oh Eric... I am so very sorry to hear this news. I will pray for a miracle and for peace and strength.
Karen

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Old 06-26-2009, 09:28 PM   #39
Soccermom
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Praying for you both...
Marcia
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Old 06-26-2009, 10:12 PM   #40
Believe51
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Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
Posts: 2,999
Eric, I cry as I write to you tonight and I feel no words I say could bring you comfort. We too have searched for options as our circumstances greatly resemble the place you are at. We too are in a race against time and all I can say is I feel so deeply for Caryn and your family. I do have recent research but Caryn has been too sick to continue with what treatment she was on.

As a spouse of a breast cancer Warrior myself I can only say this. I will never accept that the battle is over; but I must accept the fact that he is slowly slipping away and when his body cannot withstand treatment anymore....when his quality of life becomes more hindered, painful or unsatisfying.....he has one more time to ask himself if he can continue. Even if he can continue, is there something that can help? It is the sadest and toughest things I have ever had to live through. I have been told by Warriors whom I have since lost, that you know when your body is telling you those things. Even when we know, sometimes we chose not to listen. I have promised I would listen to what he needs and what his body is telling him. How can I not, he knows best what his body is saying and how far he can push it.

In my eyes Eric, Caryn will have never lost her battle. The cancer just became bigger than her! She has been so courageous and fought with grace and dignity. Caryn has taught me so much about living and fighting. Her journey has been that of a true Warrior, a battle that has been difficult, but a battle I will never say she lost.

I pray for a miracle for her, I pray for her comfort. I am speechless as the emotions you are feeling are the same I try to make sense out of myself. From where I sit, I am not so sure there are any right answers. I do know that I trust my heart and when my mind cannot answer these questions, I will look deep into my heart for the answers.

I am thinking about your entire family as I still cry and hurt along with you....as I still know none of my words can express how I feel. I hold your hand Eric for it is all I can do. Lots of love.>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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