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Old 05-28-2009, 03:18 AM   #1
eric
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Caryn's bilirubin at 15 - liver biopsy

It turns out that when Caryn's bili dropped to 8 it was going up and down and we just caught at a down time. Unfortunalely it's at 15 now which is a record high for her and signifies a higher level of liver failure than previously thought. Since her tumor markers are stable they're not sure what the cause is. To finally figure it out they're going to do a liver biopsy tomorrow morning. He said that the cause could be more microscopic cancer cells (which would be horrible), one of the drugs causing inflammation in her liver, or possibly (though doubtful since it was removed weeks ago) the fat from the TPN (liquid nutrients). It's been a draining few weeks but I pray that we get some news that we can do something about.
Caryn continues to amaze me, she never complains and seems to cope with everything that comes her way although she acknowledges that she's very scared (as I am) . I wish I had better news right now.
As always, prayers are appreciated.

Eric
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Old 05-28-2009, 08:09 AM   #2
Believe51
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Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
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Eric, you both continue to amaze me! I can only offer my unconditional prayers and positive healing thoughts to you both at this time. Caryn has remained deep in my heart for something that seems like a lifetime now. I am here routing for you both and look forward to these updates and pray that the next one I read is her miracle. I am still praying for her miracle and she so deserves one. I send my love to the family and hope they can find out what is happening to her. It is hard to fight when we do not know the overall mission. Love>>Believe51
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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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Old 05-28-2009, 09:22 AM   #3
Bill
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You all have my prayers, Eric. I pray that the liver biopsy goes well and you receive answers so that you can form a plan.
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Old 05-28-2009, 10:59 AM   #4
Shobha
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Eric,

I think you are both so brave. I hate what cancer does to a family - it is plain cruel.

I am praying hard for Caryn's biopsy results to be good. May God bless Caryn with his healing touch.

shobha
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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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Old 05-28-2009, 11:34 AM   #5
hutchibk
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I second what everyone here has said. Godspeed to Caryn and Eric.
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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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Old 05-28-2009, 11:49 AM   #6
ElaineM
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Wink Caryn's bilirubin at 15 - liver biopsy

You both amaze me !! You are both great troopers !!!!!!! Continue to hang in there !!!!!!!!!
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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
Shared by a multiple myeloma survivor.
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Old 05-28-2009, 08:51 PM   #7
chrisy
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Eric,

Well there is definitely SOMETHING going on, and the uncertainty must be so difficult to bear. Hopefully you will get some information that will be helpful in setting direction. You and Caryn are BOTH amazing, and so blessed to have each other.

You are in my prayers, all day long every day.

Much love
Chris
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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 05-29-2009, 06:08 AM   #8
Carolyns
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Eric,

I am sorry to hear this news but feel encouraged that you are moving forward with the biopsy. You, Caryn and your family remain in my prayers.

Love, Hope, Peace, Carolyn
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Old 05-29-2009, 08:17 AM   #9
mmoons
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please keep us posted

Eric-

Please let us know when you hear something...not that you need one more thing to do.

Praying so hard for both of you stong brave people!!! It is all so very scary and stressful. I hope you both can feel all the love coming your way from all of us.

Maureen
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My loves

IDC & DCIS, HER2+++ Diagnosis: October 1, 2008
  • Tumor: 6.8 centimeters, never showed on mammograms
  • ER-/PR-
  • November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
  • Stage IIIc
  • Lapatinib Clinical Trial start: November, 2008
  • Surgery: May 5, 2009
  • Started Herceptin: May 19, 2009
  • Started Radiation (33 rounds): June 10, 2009
  • September 2009: Moved to Michigan to be closer to family
  • 12/09 - still on Herceptin until May 2010
  • August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
Blog: http://moonsfamily.blogspot.com
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Old 05-29-2009, 04:27 PM   #10
Julie2
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Eric,

Both of you are in my thoughts and prayers. Hoping for a good news.

Julie
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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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Old 05-29-2009, 08:22 PM   #11
mamacze
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Hi Eric,
I think of you and Caryn often as you both have been such a beacon of hope for me during our journeys with this illness. I am sorry that her bilirubin is up and down; I wish I had a suggestion for you. Have you considered exploring any more clinical trials? I understand there is another great tri-vaccine trial in Baltimore that Dr. Disis from Seattle tumor vaccine group recommended to me; would you consider looking into that one; or another?
I understand that feeling of scared - I have found great comfort in this beautiful Irish poem - I am hoping it will speak to you as well.
It is called A Blessing for a Friend on the Arrival of an Illness
This is a site to hear the author read it:
http://odeo.com/episodes/22146100-SO...val-of-Illness
Blessings and hope and prayers for you both.
Love Kim from CT
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2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2022 On Herceptin and NED continues - WOOT WOOT!
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Old 05-30-2009, 11:28 AM   #12
caya
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Sending my prayers to Caryn and Eric, and their family.

all the best
caya/Caryn
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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 05-30-2009, 07:32 PM   #13
Yorkiegirl
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Eric and Caryn you both remain in my prayers. Please keep us posted.
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Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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Old 05-30-2009, 09:43 PM   #14
CindyE
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Eric,
I continue to pray for Caryn and you each day. Take strength in the knowledge that so many are praying for your both. God bless and take care.
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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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Old 05-31-2009, 05:33 PM   #15
WomanofSteel
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Eric, I am praying for a miracle! Be strong!
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dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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Old 06-06-2009, 10:58 PM   #16
eric
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Well the good news is that the cancer is lessening and her liver is improving aside from the bilirubin (which is a measurement of how well the liver is working) which is now up to 17. Turns out its one of the chemo drugs thats causing the problem with her bilirubin. Unfortunately the doc thinks its the gemzar thats worked so well for caryn. His plan is a break from treatment to allow her body to recover while he formulates a plan. I'm going to bug him to make sure that he considers that the gemzar interaction with the carbo might be causing the problem. I'm not comfortable with her moving away from the gemzar since its been the most effective chemo for her to date. I'll keep you posted.
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Old 06-07-2009, 12:10 AM   #17
Rich66
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I know Gemzar can levate LDFT but if a break is needed, woudl Xeloda (or S-1), another antimetabolite, be worthy of consideration?
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Old 06-07-2009, 09:02 AM   #18
eric
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Thats an excellent suggestion Rich. Unfortunately Xeloda did nothing for her when she tried it with Tykerb but I'll take a look at S-1 (never heard of it). Thanks!
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Old 06-07-2009, 09:28 AM   #19
WomanofSteel
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Great news on the cancer. Hopefully they will get the rest figured out.
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dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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Old 06-07-2009, 09:30 AM   #20
Rich66
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Although around a long time in Japan, S-1 or TS-1 seems to be available only in study. Maybe in CT:
http://her2support.org/vbulletin/sho...&highlight=S-1
Maybe there are other antimetabolites to consider: Ixempra, Methotrexate

Even so..if Gemzar, not the cancer is elevating the LFT, that might suggest continuing it showing other signs of working.
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