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Old 02-28-2009, 07:39 PM   #1
eric
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Devastated - told weeks!!!

To finally determine why Caryn was continuing to have digestive problems they did an ERCP, which is a catheder scope down through the ducts. Unfortunately, the dr found tons of microscopic cells clogging the ducts inside the liver. This is driving her liver toward failure. If we do anything there's a risk of accelerating damage to the liver and shortening the little time that she has. We told our 16 year old daughter and 13 year old son -what a HORRIBLE thing to have to do. We're not quite ready to stop fighting yet so we've asked her primary Onc to speak to her Sloan Onc to discuss last shot treatment or a surgery. We're hoping that they can come up with something her2 related that won't compromise her liver even further. I'm devastated as it appears that my kids have less than 2 weeks to be with their mom and I have less than 2 weeks to be with the best thing that's ever happened to me outside of my kids.
I'm sorry if this post makes things harded for anyone else.
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Old 02-28-2009, 08:02 PM   #2
caya
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Eric -

I am so saddened by this news. I pray that the Sloan onc. can think of something so that Caryn can keep up the fight.

I am praying that you all find comfort - HORRIBLE....

wishing you all the best
caya (Caryn is my real name, I really feel this)
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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 02-28-2009, 08:11 PM   #3
sassy
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Eric,

Please know that I am keeping your entire family in my thoughts and prayers. I am praying that the Sloan onc can help.
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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 02-28-2009, 08:18 PM   #4
vickie h
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Oh Eric, I am so heartbroken and in tears because of this news. I am on my knees, praying to God to please heal Caryn and to grant you the peace and ability to face the paths ahead. Please, please know you and your family are in my heart tonight. I am 60 years old and would switch places with caryn if I could, I truly mean that. Hold your beautiful wife and children close and tell them that thousands of us out here are praying fervently for a miracle.

Love, Vickie
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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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Old 02-28-2009, 08:23 PM   #5
Lani
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the most remarkable lecture I have heard in the last 5 years

was the following

Adoptive T-Cell Transfer for Metastatic Melanoma
James Yang, MD
National Institutes of Health

at a conference in October hosted by Dr. Slamon

He was, I believe, starting to try to do something simiilar with other cancers...or at least thinking of starting to as he stated he believed his method would be applicable to many other sorts of cancer.

He only treats patients at the NIH and the patient's whose scans he showed and whose stories he told were widely metastatic.

Perhaps trying to contact his office at the NIH???
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Old 02-28-2009, 08:45 PM   #6
chrisy
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Oh Eric, I have no words, only prayers.

Wrapping you and Caryn and your family in loving prayers.

Much much love
Chris
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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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Old 02-28-2009, 08:45 PM   #7
Bill
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Eric, my prayers are with you and Caryn, and your family. I hope and pray that something can be done.
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Old 02-28-2009, 09:01 PM   #8
ElaineM
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Wink Devasted - told weeks !!

I am so sorry. There must be something that can be done. Keep asking the docs. Meanwhile, I have my fingers crossed and will say a prayer for you and your family. Take care.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
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Old 02-28-2009, 09:28 PM   #9
freyja
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Yes! Keep fighting. We're fighting with you. Keep asking questions. Get face to face with those doctors and try everything. I believe in miracles. We're with you no matter what happens.
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"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.

"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)

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Old 02-28-2009, 09:47 PM   #10
Debbie L.
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of course devastated

Oh Eric, our hearts ache for you and for your family. I pray that you use every possible moment left to Caryn to cherish, support, and love each other. I pray that you do not get so caught up in searching for more options that you miss an opportunity to grab these precious moments, right now.

Searching for options is fine and of course we hope for success there - but do not hang your hat on that. Do not risk wasting one single precious moment. This is it, the only reality, right NOW. There is absolutely nothing to lose, and so much to gain, in that approach to each moment.

If only we all had that urgency, every moment. If only we did not have to be motivated by being so imminently close to facing our mortality to remind us to fully appreciate this moment. Hug your kids, your lover, your bosom buddies, and best friends. Even if just figuratively, in your heart.

Please, Eric, do not worry about making things harder for those reading. You're actually making it easier for us (in the long run) by giving us the opportunity to be with you just a little bit in your hard times. Keep posting, so that we can offer our small words of support and also so that we can learn that this - even this - can be done.
Holding you in my heart, with love,
Debbie L.
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Old 02-28-2009, 10:51 PM   #11
SoCalGal
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Oh my god Eric I am reading through tears. I echo the words of the others...sending love and prayers.

Try to stay in the present moment. As a mom (with kids just a few years older) I decided that my PROCESS was what held value for my kids, my friends, and my family - that was the only way for me to cope with the times that my treatment wasn't working and I, too was needing a miracle.

Hoping a miracle is on the way to you and your family.

Flori
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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 02-28-2009, 11:08 PM   #12
Margerie
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I am so sorry Eric and I will be thinking of you and your family
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Are we there yet?


Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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Old 02-28-2009, 11:41 PM   #13
Kavy
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Eric,
I am so sorry to hear Caryn's news. I'm praying for the doctors to find a way to help her, and I am also praying for you and for your family.
Keep fighting for her.
Hugs,
KarlaV.
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Old 03-01-2009, 03:34 AM   #14
jones7676
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Eric,

I am so very sorry to hear of Caryn's news. I am going to try to continue to think positive though because within the last 20 years I've had two acquaintances and for one they found a trial and she lived longer and a good life.

I am hoping and praying that a call to the NIH can save Caryn as it did save this acquaintance and I believe it may be possible and could happen.

Whatever the outcome is I am part of the group praying for you and your family. Even though I don't know you, my heart is hurting for you and the children and hoping for the best.



I am hoping the same type of "miracle" is there for all of you.
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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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Old 03-01-2009, 04:40 AM   #15
RhondaH
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Eric...

prayers were just said for Caryn and your family...I hope something can be done and will continue to pray. Take care and God bless.

Rhonda
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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 03-01-2009, 06:07 AM   #16
suzan w
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sad sad sad...sending peaceful thoughts your way.
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 03-01-2009, 06:11 AM   #17
Lien
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Eric, that's such devastating news. I am so sorry. And I'm crossing all my fingers and toes, hoping that some kind of therapy can be found that will by her more time.

I do think Debbie L. has a point, though. These weeks are so precious. When my Mom was dying of cancer of the esophagus, almost 10 years ago, I got to spend the last week with her. She told me she felt very lonely, because my father couldn't accept that she was dying. She told me she needed for us to let her go. She felt it was her time.

So even if you do everything you can to find another treatment, please don't forget to ask her what she needs from you. Don't forget to let the children spend time with her, giving them and her a chance to accept what's going on. And give each of your children enough space to deal with this in their own way.

I am so grateful to you for finding the time to let us know. We want to be there for all of you.

Sending hugs & healing energy all the way from the Netherlands, Europe.

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 03-01-2009, 06:42 AM   #18
eric
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I can't tell you how much ALL of your words mean to me.
Lani - I've emailed Dr. Yang and will call as well. I also cc'd Caryn's Onc in the hopes that he will reach out as well.
Our family realizes the reality and will make decisions based on real information but we're not ready to just give up. We will weigh any positives and negatives but am thankful to have possible options to look into.
If there's a God - God Bless You ALL!
Love to all,
Eric
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Old 03-01-2009, 06:59 AM   #19
Mary Jo
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Oh dear God Eric.......your post has made me so sad and I am so so sorry for you, Caryn and your children. So so hard it must be.

I ask God to comfort you all - to hold you close - to surround you with peace.

I wish there was more I could say but there isn't....only that I know you are loved - incredibly!!!

Gentle hugs,

Mary Jo
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"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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Old 03-01-2009, 07:17 AM   #20
Mary Anne in TX
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Eric, my heart is heavy for your circumstances, but my spirit is high with possibilities for your family. I send love and prayers to you all. May God's angels stay near to help. ma
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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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