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03-03-2009, 02:58 PM
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#81
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Senior Member
Join Date: May 2006
Posts: 3,142
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Devastated - told weeks !!!
Just thought I would check in to see how you guys are doing. I was pleased to read you talked the the doc into trying something else. It might help.
Also I with the folks who suggested milk thistle and beets. My naturopath prescribed both a long time ago. I still take milk thistle and eat fresh beets.
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03-03-2009, 03:01 PM
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#82
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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I just came home from work and logged on to hear the news that you have been given hope with the a prior treatment that worked for Caryn. My thoughts continue to be with you and your family, and I have a positive feeling that this combination may work.
Best wishes,
Barbara H.
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03-03-2009, 04:48 PM
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#83
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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I am glad to hear you have such a good physcian. I am glad to hear it worked so well before. I am hoping, praying, and believing it will work again for her and I will be watching closely (as I am sure we all will) to see how it works out. It was wonderful to hear your good news.
__________________
Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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03-03-2009, 04:59 PM
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#84
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Senior Member
Join Date: Oct 2007
Posts: 203
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Great News, Eric. Thank you for sharing with us, and know that we are all sending you and Caryn and your family love and healing.
Rebecca
__________________
Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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03-03-2009, 07:14 PM
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#85
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Senior Member
Join Date: Aug 2006
Location: Poland Ohio just a little south of Youngstown.
Posts: 473
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Eric, I was so relieved to hear that your doctor hasn't given up and is trying this treatment. Please know that you and your wife and family are in my continued prayers.
Hugs
__________________
Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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03-03-2009, 07:23 PM
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#86
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Dear Eric,
Just another Her2 sister hoping and wishing for a miracle,
gentle hugs,Marcia
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03-03-2009, 11:14 PM
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#87
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Eric, just wanted to add my prayers for you, Caryn, your kids....
take care.
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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03-04-2009, 07:08 AM
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#88
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Eric -- I am praying for healing to Caryn's liver. Glad you have a good, aggressive doctor. Beet juice and milk thistle tea - sounds good, but maybe not together. Please keep up posted.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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03-04-2009, 07:26 AM
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#89
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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eric,
I'm holding thoughts of you and your family. Praying for God's love to enfold you and sustain you all,
much much love to you
__________________
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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03-04-2009, 10:58 AM
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#90
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Eric and Caryn, I'm prayin' today too! Much love, ma
__________________
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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03-04-2009, 11:16 AM
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#91
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Senior Member
Join Date: Apr 2008
Location: me & my three HANDSOME grandsons!!Jacksonville, Arkansas
Posts: 354
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Eric, nothing but positive vibes for you, your lovely wife and beautiful children.
__________________
Terri B.
46 yrs. young
Dx IDC 3/6/08
1.5 cm & .6 cm grade III, Stage IIA
es/pr- Her2+++, 9/9 richardson
Double Mast w/expanders 4-14-08
3/9 nodes positive.
additional excision rt breast 4-25-08
weekly T/H x 12 (6-2-08) Done!
FEC x4 (9-8-08) Last one 11-10-08!
Herceptin complete 8/10/09!!
33 RADS DONE 2/13/09!
rt. breast biopsy 3/20/09 .. B9!!
reconstruction complete!
DEEEEEEported on 5/19/10!!
almost 5 YEARS NED!!
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03-04-2009, 01:52 PM
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#92
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Praying for your family! God bless you all and guide Caryn to receive the right drugs and heal her liver and regain her strength!
Happy to hear that low dose of herceptin has been added!
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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03-04-2009, 02:28 PM
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#93
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Senior Member
Join Date: Jun 2007
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
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Dear Eric, I usually do not log on to this site on weekends but something made me give in to the temptation. I heard of this news Sunday and I have been snowed in since then; I could not wait to respond to this news and to let you know I am right here too. Candles are burning for Caryn and the entire family during this hard situation. Please know that prayers have been revised for her and repeated since I read this.
I admire your strength and devotion to this sweet woman. Also know that I have been saying special prayers for you. Eric, I wish all the best for both of you but need to remind you to please take care of 'you' during this balancing act. Although our stories are different, I too am a caregiver to the best person I know. And with that I just need to send you a big hug. I cannot even imagine how you are digesting this news.
Stay strong My Friend and remember we love you both.>>Believe51 and The Mighty Oak
PS: The hardest thing about reading your post was hearing what is happening to a very special friend. Love to you Caryn. Please just do your best and we will do the rest. We all love you so very much!!
__________________
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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03-04-2009, 03:02 PM
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#94
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Dear Eric and Caryn - I am really sorry to read your sad news, but am glad that the doc hasn't given up. I've been in liver failure twice, but not for the same reasons. I was actually green with weeks to live and no chance of a transplant. Besides other treatments, my onc put me on heavy steroids to help my liver. Has this been suggested at all???? Also - Milk thistle helps cleanse the liver. I take it in a capsule form. My other suggestion is dandelion. Dandelion has long been used to cleanse the liver. it comes in pill form, tea and of course the real thing. I grew up on it (Greek) so I am use to the taste. I have to warn you it is bitter and an acquired taste. Best way to cook it is to boil (like spinach), put olive oil, lemon, garlic and salt & pepper to taste. Save the water. Strain it good and add sugar/honey or sweet-n-low. Caryne should drink several cups a day. The tea bags are easier, but I think fresh from the actual plant has more of the stuff she needs. Please tell Caryne about my story to give her what she needs most right now- hope. She already has determination (your 2 kids and you), but just remind her of that. Good luck and God bless...I believe in miracles because they have happened to me.
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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03-04-2009, 03:13 PM
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#95
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Senior Member
Join Date: Jul 2008
Location: New Boston, NH
Posts: 275
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Dear Eric, no words are going to make this any easier for you, but just know she is in our prayers as you and your children our. May all the angles above guide you and take care of you.
__________________
-Sarah-
Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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03-04-2009, 08:47 PM
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#96
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Hi Eric,
I am so hopeful that the herceptin and gemzar will take care of Caryn's liver. Thinking of Caryn and your family tonight.
Hugs and Prayers,
Lexi
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03-04-2009, 08:51 PM
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#97
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Senior Member
Join Date: Sep 2005
Posts: 589
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The fight continues...
Caryn met with the dr today to formally discuss the treatment plan, if she chooses to move forward with it. As mentioned, he proposed Herceptin/low dose Gemzar plus he's adding Carbo. He made it clear that if her bone marrow can't bounce back from the chemo onslought she may need to be hospitalized within 5-10 days after treatment and then it's just a matter of sleeping away her few remaining days in a hospital as they manage her pain. If her body can handle the chemo and it works that it can potentially add months (and possibly more in my book). My feeling is that if it can add months or help turn her liver functions around, then that opens the door to other possibilities.
I worked very hard at not "influencing" her decision but she already knew that I'm not ready to give her up yet. Well, this evening she announced to my kids and me that she's moving forward with the treatment. I'm scared but happy with her decision. I continue to be awed by her bravery!!! I also feel like because of all of you there's always a chance for that "miracle". I kind of feel that if there's enough voices yelling out than the chance of someone listening goes up. Well, the voice I heard from all of you wonderful people was loud and clear! I only hope the powers that be do as well.
My gratitude and love to all,
Eric
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03-04-2009, 10:08 PM
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#98
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Wow, Eric. Words cannot express. You and Caryn are beyond the pale with courage. I am in awe and I am praying hard that this treatment turns everything around...
__________________
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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03-05-2009, 03:59 AM
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#99
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Eric and Caryn, may the herceptin and gemzar do their duty for you. What amazing courage and love. I'm believin' for powerful, positive results and more that months to come. I send you my love and prayers and gratitude for who you both are. ma
__________________
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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03-05-2009, 05:46 AM
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#100
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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You and Caryn and your kids are in my prayers. I'm praying that this treatment will be your miracle for better news. You are couragous and strong. Such inadequate words for what I'm feeling for you both.
__________________
Pam
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
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
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
12/12 ablation of liver
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