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03-01-2009, 01:00 PM
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#1
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Senior Member
Join Date: May 2006
Posts: 46
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I am so very sorry to read this news, Eric. This is heartbreaking. My heart goes out to you and your family.
-Gabrielle
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03-01-2009, 01:44 PM
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#2
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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I am praying for that miracle for your family. I do believe in them. Lifting all of you up in prayer and asking God to bless your days and navigate your interactions with the doctors.
Tonya
__________________
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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03-01-2009, 02:37 PM
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#3
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Senior Member
Join Date: Sep 2005
Posts: 556
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Eric,
I am so mad and sad at the news. I have known you and Caryn since I joined the board. Please don't give up and try Navlbine or Gemgar with proven result for Her2 disease.
Please know that miracles are possible. I have heard many people who were given two weeks to live for a long time once they start a targeted treatment. Please don't loose hope and fight.
Thinking of you and Caryn and sending all the positive thoughts and prayers you need.
Please keep us posted.
Julie
__________________
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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03-01-2009, 02:38 PM
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#4
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Senior Member
Join Date: Dec 2006
Location: Massillon, Ohio
Posts: 247
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Many prayers are coming your families way. Please note that all these posts are from people who support you and your family. We are all in this special club and we fight together; as well as with our family and friends too.
__________________
Laurie
Diagonsed 8/10/06 (found own lump)at 35
Her 2 +++, er-/pr-
4 A/C 8-29-06 to 11-06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
12 Taxol 12/18/06-03/06/07
Herceptin 12/18/06- 12/11/2007 done!!! yeah!!!
33 rads started 3/22/07, done!! yeah!! 5/07/07
Lymphedema diagonsed 2/1/07
BRCA1/BRCA2 negative
port out 1/10/08
pregnant after 6 yeas of trying- due mid feb.
Ryder David Kessel Hunter born feb.6th 2009
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03-01-2009, 02:39 PM
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#5
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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So very sorry to hear this news. I am praying hard that God will find a way and save caryn. Please God....
__________________
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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03-01-2009, 03:08 PM
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#6
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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I am adding my prayers to those of my sisters. Every moment is precious. I hope you find a new treatment or drug combo that works for Caryn.
__________________
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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03-01-2009, 03:19 PM
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#7
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Dear Eric,
I wanted to let you know how much I respect you for the ongoing involvement and support you've provided Caryn and all of us on this site. I know that you are a fantastic dad and with your support, your children will be fine. You will have an opportunity to witness what a fantastic job you and Caryn have done.
BUT......to the extent Caryn is up for it...keep on swinging. What about some of the recent vaccine trials. Would one of this be an option to boost Caryn's immune system? Was a surgical procedure ruled out? Chemo embolization directly to the liver?
Warmest wishes of peace and gratitude to you and your family.
Love...Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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03-01-2009, 03:48 PM
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#8
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Eric,
I just got home and you, Caryn and the kids have been on my mind and in my prayers all day. I know it isn't much but I pray that knowing how loved you are and how much I (we all) care helps in a small way.
Asking God for a miracle.........
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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03-01-2009, 05:58 PM
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#9
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Senior Member
Join Date: Apr 2006
Posts: 131
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I am addding my prayers that a miracle will happen. You have the folks here sending up prayers that it will happen.
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03-01-2009, 06:27 PM
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#10
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Eric,
Praying that Caryn, you and your children have the strength you need to see you through this difficult time. Caryn is blessed to have you by her side.
Love to you,
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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03-01-2009, 03:59 PM
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#11
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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I don't know what to say, I feel sick to my stomach. Please know that I will pray for you, Caryn and your children. Do know that they can't tell you how much time she will have left. It could be much longer than weeks. My husbands secretary was told she had no more than months left, she had glioblastoma (brain cancer)...she is still here almost 2-1/2 years later. I am hoping that these doctors will put their heads together and come up with something that can help her...don't give up hope ..sherryg683
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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03-01-2009, 04:02 PM
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#12
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Eric,
I am sorry to read your post. My first thought is I am glad you are not giving up, maybe there is a new trial,
or treatment ...I am glad you made the calls to the top
dr.
I will pray that some one has an answer for you.
I keep you and Caryn and your children in my prayers.
Kindest Regards,
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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03-01-2009, 04:38 PM
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#13
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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it breaks my heart to hear this! so much going on in my personal life that has me messed up right now that this just brings me back down to earth. i'm sending lots of prayers your way
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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03-01-2009, 05:05 PM
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#14
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Senior Member
Join Date: Feb 2006
Posts: 437
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Eric I have not been on these boards in quite awhile and am saddened by this news.
Before I was diagnosed I nursed my mom who had BC mets to her liver. The lesions were too many to count and the onc told me it would probably be 6 mos, tops. ( She was 75 the time ) She responded to Taxol and and lived an additional 5 years of an active life.
Caryn sounds like she is obstructed, can they do a stent proceedure which will allow the liver to drain?
Please forgive me , but I believe where there is life there is hope.
I pray there is an alternative for Caryn, and I will hold you all in 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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03-01-2009, 05:31 PM
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#15
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Sorry to hear the bad news. Seems one of our members has it in her signature that several years ago her liver was found to be 'full of tumors'. I wonder if the situation Caryn has is different because the location - you mention 'duct' - is hard to reach.
I know we are praying for a miracle. But miracles do happen sometimes. So we'll continue to pray for Caryn and your family.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 03-06-2009 at 10:54 PM..
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03-01-2009, 06:28 PM
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#16
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Adding my prayers for Caryn right now. There must be another tx option for her.
I have a 12 1/2 and a 16 yr old, too. I have imagined in my mind how it might be to tell my kids this same news one day. It brings me to tears when I do think of this.
Please don't feel bad to share your feelings here with us. We can take it. We are in this together. For better and for worse. It's a sister and brotherhood that ties us together and gets us through the really hard trials with this disease.
Hang in there friend. Hope exists and miracles happen everyday.
Hugs and Prayers,
Lexi
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03-01-2009, 06:31 PM
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#17
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Eric
I know you live close to Philly. Go online and make an appointment with the Cancer Center of American there.
They are innovative and resourceful.
__________________
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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03-01-2009, 08:17 PM
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#18
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Nothing to add except my prayers and love.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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03-01-2009, 08:43 PM
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#19
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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 and Caryn -
I echo Julie2 as I think you have been on this board as long as I have as well.
I see you have given this new news some quick consideration and put out some calls. Keep rattling their cages and jerking chains as you know about the "squeeky wheel" ...
My fervent prayers go your way for that miracle call back with a plan for Caryn.
Your children have lived with the threat of their mother going away for a long time, and I wish only the best blessings for their stout hearts.
__________________
"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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03-01-2009, 09:16 PM
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#20
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Senior Member
Join Date: Sep 2005
Posts: 290
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First Thoughts
Dear Eric and Caryn,
I am praying for you both. My first instinct at reading your post, was to suggest that you ask about radio frequency ablation, thermal ablation, or interstitial laser techniques. These have seen success in primary and secondary liver tumors, and I believe have been used in other types of malignancies as well when ductal metastases have been involved. I obviously don't know the other details of Caryn's current disease status, but I thought I would offer this anyway. Try to stay strong Eric. Your wonderful wife and children need you now more than ever.
Sincerely,
Tom
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