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03-02-2009, 07:06 AM
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#61
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Eric and Caryn,
Add me to the list of many praying for Caryn, you and your family. Hoping today you will get some direction in what way to go for the next treatment.
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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03-02-2009, 07:36 AM
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#62
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Senior Member
Join Date: Nov 2005
Posts: 943
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"If there's a God - God Bless You ALL!"-
Yes, Eric, there is a God and it is hard to see the master's plan sometimes, especially in hard times. I am sending prayers your way that somehow your sweet family will be blessed in this crisis and for miraculous healing.
__________________
Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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03-02-2009, 07:47 AM
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#63
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Senior Member
Join Date: Jan 2008
Posts: 154
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Eric, I am so sorry to hear this. I wish that I could offer more kind words to try and help you deal with this horrible news, but at these times I am usually just speechless.
We've never had the chance to interact with each other in the past, but I want you to know that you and your wonderful family are certainly in my prayers.
__________________
Diagnosis and Treatment: DX 12/07/07
Male Diagnosed with DCIS at age 39
Mastectomy on right breast
Tumor Stage pt1b NO MO
DCIS Tumor size 1.5 x 1.x .6cm
Infiltration tumor size .25X.17 cm
Bloom-Richardson Grade 3(score 8)
Nuclear Grade 3 with comedo necrosis
Estrogen+/Progestrone+/HER-2/Neu +++
FISH ratio 4.31
Lymph node removal scheduled 1/07/08
17 nodes tested and all negative 1/08/08
Started Tamoxifin 1/29/08
Oncotype DX score 52 (off the charts, according to my onc!!!)
Starting TCH 3/14/08
BRCA I Positive BRCA II Negative
Finished TC 6/27/08 continue Herceptin
8/1/08 Herceptin stopped due to low Muga score
Mastectomy on left breast 11/10/08
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03-02-2009, 08:08 AM
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#64
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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T-dm1
Hi Eric,
I'm quite sure my idea won't work, but at this stage everything is worth trying. It is not clear to me that Caryn really progressed when she was on the TDM1 trial. She was also on a high dose. This is a very effective drug for some patients and she may not have had the opportunity to receive the enough treatments to help her. The drug companies are very strict, but maybe her trial doctor would be willing to fight for her to be placed with a lower dose back on the trial with this new development.
You and Caryn continue to be in my thoughts.
Barbara H.
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03-02-2009, 10:02 AM
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#65
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Senior Member
Join Date: Sep 2006
Location: Chicago, IL
Posts: 105
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Please know that you and your family are in my thoughts and prayers.
Lisa
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03-02-2009, 12:07 PM
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#66
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Eric,
There is a God and He is not a God of illness. Why people suffer and leave us I do not know. I do know this: God hears our prayers. I am crying for Caryn, but I am really crying for you. You and your family will be in my prayers. May some doctor offer you the gift of hope soon!
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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03-02-2009, 01:06 PM
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#67
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Eric, my prayers are added for you and Caryn to all the rest here today. I'm so sorry you've received this news and only pray the Dr's come up with something to help.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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03-02-2009, 02:29 PM
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#68
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Eric,
I will be praying for your family and Caryn.
Amelia
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03-02-2009, 05:53 PM
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#69
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Senior Member
Join Date: Oct 2007
Location: Portage, IN
Posts: 198
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Eric,
You and Caryn are in my prayers.
__________________
10/15/07: Diagnosed at age 46 lymph node removal (2)
ER/PR - Her2 +++
11/07: Port Installed
11/07 - 1/08: AC
1/30/08: Right Mast Stage lllC
2/28/08: Start Taxol and Herceptin weekly.
5/15/08: Finished Taxol
8/12/08: Finished 33 Rads
1/29/09: Finished Herceptin
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03-02-2009, 07:20 PM
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#70
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Senior Member
Join Date: Sep 2005
Location: Ohio
Posts: 212
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Eric,
I'm so sorry to hear of Caryn's latest prognosis--like others on this board, I've been reading your posts for years and have been pulling for her all along--I've always thought she was so lucky to have someone like you in her life, someone who is willing to do the research, advocate on her behalf, and come here and find support to offer her. Please know that I'm keeping you all in my thoughts and prayers during this horrible time--and hoping for the best-
__________________
Audrey
diagnosed July 2001, at age 36
large tumor, 11+ nodes
Stage IIIb, er/pr-, Her2+
treated with A/C, weekly Taxol
radiation, + year of Herceptin
on clinical trial. double mastectomy
followed by reconstruction
NED!!
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03-02-2009, 07:30 PM
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#71
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Senior Member
Join Date: Oct 2007
Posts: 203
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Dear Eric,
I am sending you and your family love, that's all I have for you.
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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03-02-2009, 07:39 PM
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#72
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Senior Member
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
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Caryn, you and your children are in my prayers. Please check out the information Lani sent. I looked it up and found something with Her2 bc and Adoptive t-cell transfer.
Hugs,
Karen
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03-02-2009, 09:12 PM
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#73
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Senior Member
Join Date: Apr 2008
Location: WA State
Posts: 199
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Eric,
Caryn, you and the family are in my prayers. Keep hope. God bless.
__________________
Cindy
L/IDC, 1.2 cm, Stage 1, Her2+, ER+/PR+ at age 48
4/15/2008 Lumpectomy + sentinel node biopsy
Margins neg and Nodes neg (2 tested)
MUGA score 55 on 5/6/2008
Treatment starting 05/08/2008:
Chemo 4 cycles, 3 weeks apart with Taxotere & Cytoxan - Chemo - Done 7/24/2008!
Herceptin for 1 year
Radiation starting in 9/2008
MUGA score 61.9 on 9/04/2008
33 Rads with boost - Done 10/13/2008
MUGA score 58 on 12/01/2008
MUGA score 59 on 3/16/2009
Herceptin for 1 year - Done 4/27/2009
MUGA score 64 on 6/22/2009
All scans - NED 6/24/2009
MRI - NED 11/10/2009
All scans - Still NED 8/25/2011
Still NED 2017!
I am calling this my pink journey
Follow my journey into the pink at my blog here
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03-03-2009, 11:05 AM
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#74
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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lots of love
to all of you Eric. I think your continued research and tenacity have potential to help this situation. Not to mention the power of love, which you have exhibited so beautifully for so long. I am directing our Colorado sunshine to you with all of my might.
__________________
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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03-03-2009, 12:35 PM
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#75
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Senior Member
Join Date: Sep 2005
Posts: 589
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Thank you all!
I spoke to Caryn's Dr who has agreed to start Caryn on herceptin with a very low dose of Gemzar. This was the first combo that Caryn went on to when first diagnosed stage 4. It brought her 2 years of NED. Apparently the dosage will be low enough that her liver should be ok. I know it's the longest pf shots but I'm happy to have it. My thanks to all of you. Your love and support are amazing.
I'll keep you advised.
Eric
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03-03-2009, 12:52 PM
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#76
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Dear Eric - JOY is what comes into my heart from your post. I am so glad the docs have agreed that all may not be lost.
Are you doing anything else that is therapeutic for the liver such as Milk Thistle and some detox teas? I felt these extra remedies did help my body clear the cancer "debris" from my liver and blood.
__________________
"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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03-03-2009, 01:43 PM
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#77
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Eric dear! Good news! I'm elated that Caryn is starting on something that worked so well for her. Yea! If she can start taking Milk Thistle tea during the day, it is very beneficial to ridding the liver of toxins and it's very soothing. There are liver cleanser teas at the health food store that are combos of herbs but all have milk thistle in them. I'm still praying for you, Love, Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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03-03-2009, 01:48 PM
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#78
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Dear Eric and Caryn...Hey a "long shot" is a shot, nonetheless. As the saying goes "where there is life, there is Hope" so never, never give up!
Enjoy each day to the fullest - no matter what! None of us knows our tomorrow's. We're all dying. Some just "know" where others don't have a clue. I feel those of us who "know" or who had our mortality smacked in our face are the lucky ones. I really do. We are able to do and say those things we want to say. Often times when death is sudden and totally unexpected there is so much regret.
So all - LIVE YOUR LIFE.......love those around you..............say everything you want to say TODAY as tomorrow might be too late.
God Bless us everyone....
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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03-03-2009, 01:56 PM
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#79
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Senior Member
Join Date: Feb 2006
Posts: 437
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good news to have a plan. hope and prayers that this combo will be effective. (We can all live quite long time with a small percentage of a functioning liver)
God Bless.
__________________
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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03-03-2009, 02:12 PM
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#80
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Eric,
I'm with Steph - glad to hear that Caryn's doctor is willing to consider another option. It's been a while since the Gemzar/Herceptin and that worked well before. Even if it is, as you say, a long shot. There's a reason why they throw hail mary passes...because sometimes they work.
Although the problem seems to be in the ducts, I also agree with trying supportive treatment for Caryn's liver. Milk Thistle, yes, beet juice is also good for general liver detox.
Hopefully the chemo will buy some time for Caryn to regain strength. I'm not completely clear on what the issue is, but is this a situation where they could put in a stent?
You are in my constant thoughts and prayers.
__________________
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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