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01-28-2009, 06:41 PM
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#1
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Senior Member
Join Date: Sep 2005
Posts: 589
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Now pancreatitis! anyone experience?
As a quick refresher, Caryn had the SIRT procedure about 3 months ago to attack a large stubborn single spot in her liver. The Sirt worked very well on the original spot, as it's considerably smaller. Unfortunately a new small spot (1.2 cm) has popped up in her liver, there's now cancer in the nodes right by the liver and her pancreas is lighting up on the PET. My biggest concern right now is the pancreas. The Dr's feel that the pancreas lighting up is due to pancreatitis rather than cancer but I'll feel much better when we get confirmation that there's no cancer there. Regardless, the inflammation is causing Caryn pain and discomfort so she's now on pain meds. They'll schedule an endoscopy to confirm what's causing the pancreatitis so any positive thoughts sent our way will be greatly appreciated. Has anyone else had a similar experience?
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01-28-2009, 07:29 PM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 823
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Eric I'm sorry to hear about this new development with Caryn.
Prayers going out for her.
The only experience I have with pancreatitis is with my dog who now has chronic pancreatitis.
Just make sure she has very low fat diet, and keeps ahead of the pain.
__________________
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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01-28-2009, 08:05 PM
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#3
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Eric,
I am adding my prayers that the area lighting up on the pancreas is nothing serious. I hope caryn gets relief from her pain soon.
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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01-28-2009, 08:20 PM
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#4
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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No experience with this but sending 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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01-28-2009, 08:27 PM
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#5
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Eric, my thoughts and prayers are with you and Caryn. I'm sorry that I can't offer more help, but I've got no experience with pancreatic issues. Maybe try different nsaids in addition to the pain meds. You guys hang in there, brother.
__________________
For Nicola
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01-28-2009, 09:04 PM
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#6
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Hi Eric,
I am sorry to hear about Caryn's pancreatitis. I did not have the same situation but something....
I had rapidly rising bilirubin 1 point per day. We thought it was the liver mets. I went to the hospital and it turned out that the lymph nodes around the bile duct near my liver were swollen closing the bile duct. We ended up having a stent placed in the bile duct and once it opened the duct the liver began to drain I got pancreatitis. It was very painful and lasted about 24 hours. My liver counts became normal over the next few days. That was last March and I have the stent replaced every 3 to 6 months as the bile duct has not opened up again when we remove the stent. So far so good.
I wish you and Caryn well.
Carolyn
Last edited by Carolyns; 01-28-2009 at 09:09 PM..
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01-28-2009, 09:19 PM
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#7
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Hi Eric,
I am sorry to hear about Caryn's pancreatitis. I did not have the same situation but something....
I had rapidly rising bilirubin 1 point per day. We thought it was the liver mets. I went to the hospital and it turned out that the lymph nodes around the bile duct near my liver were swollen closing the bile duct. We ended up having a stent placed in the bile duct and once it opened the duct the liver began to drain I got pancreatitis. It was very painful and lasted about 24 hours. That was last March and I have the stent replaced every 3 to 6 months and so far so good.
I wish you and Caryn well.
Carolyn
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01-29-2009, 09:50 AM
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#8
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Adding my prayers and postive thoughts for Caryn.
__________________
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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01-29-2009, 10:45 AM
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#9
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Eric, So sorry to hear about Caryn being in pain. I'm praying for you both and sending healing energy her way. Hang in there, we're all here 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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01-29-2009, 02:14 PM
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#10
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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I send you and Caryn my prayers and best wishes also, Eric. 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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01-29-2009, 03:53 PM
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#11
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Sending a prayer that Caryn should feel better soon!
__________________
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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01-29-2009, 04:25 PM
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#12
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Senior Member
Join Date: Sep 2005
Posts: 556
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Eric,
Sending my prayers for Caryn and you, hope it is just an
inflammation and goes away soon.
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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01-29-2009, 08:35 PM
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#13
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Senior Member
Join Date: Sep 2005
Posts: 589
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Thank you ALL. You're good wishes help. Hugs to all, Eric
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01-29-2009, 08:54 PM
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#14
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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You and Caryn will be in my prayers. I know this is a scary time, may God help you get through it and all goes well..sherryg
__________________
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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01-30-2009, 07:11 PM
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#15
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Senior Member
Join Date: Aug 2008
Posts: 45
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eric, i'm sorry to hear of caryn's problems. i have numerous nodes with mets in abdominal area. several are clumped together and pressing on my pancreas, liver and bile duct. in nov i was in hosp. for 5 days with acute pancreatitis. at first we thought it was xeloda and that may have had a part in it, but the nodes are right against the mouth of the pancreas. pain never really went away and new years day back in hospital for a week. however pan. enyzmes were normal but bilirubin and liver enyzmes sky high. nodes are also pressing on bile duct causing an obstruction and jaundice. they had to put 2 stents in to keep bile duct open. still in constant pain and been on percocet for weeks now. monday will start rads to shrink this area and then chemo to hopefully kill it off. radiologist told me that to remove it completely with rads would require too high a dose and would damage organs around it. i thought it was unusual to have mets in this area from breast but i'm finding it's more common than i thought. nothing so far in liver and hope it stays that way. very down that i have to do the rad thing again for 5-7 weeks and them chemo again especially losing hair a 2nd time. may sound stupid but that's bothering me something awful. oh i forgot, at first they thought there was a mass in pancreas but it was highly inflammed due to the clump of nodes. i have more nodes in there but this one area is causing the problems. onc ran pancreas marker and that was normal. i'm sure caryn's will be also. i'll keep her in my prayers and please lets compare notes in the coming weeks. good luck.
Last edited by grandma2; 01-30-2009 at 07:14 PM..
Reason: spelling
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01-30-2009, 09:38 PM
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#16
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Senior Member
Join Date: Sep 2005
Posts: 589
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Grandma, I'm sorry to hear that you're suffering with those nodes but I'm hopeful that the rads do their stuff for you. It sounds like it's been a tough gp for you but I'm glad that it's not in your organs.
I do understand your upset over your hair as it also upset Caryn very much when she had to change treatments.
I look forward to comparing notes as well. Thanks for sharing.
Eric
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02-01-2009, 08:44 AM
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#17
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Eric,
Caryn is always in my prayers.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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02-04-2009, 07:41 PM
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#18
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Senior Member
Join Date: Apr 2007
Location: Mississippi
Posts: 600
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I feel for you. I had pancreatitis twice in the past. Not cancer related. I cannot imagine pain any worse. Natural childbirth was minor compared to that. I hope she is better.
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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02-04-2009, 07:57 PM
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#19
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Senior Member
Join Date: Sep 2005
Posts: 589
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Unfortunately it turns out that the pancreatitis is being caused by cancer in the head of her pancreas. In order to avoid putting in a stent she's starting eznymes to help the digestive process. She's also switching from Avastin/Abraxane to Ixempra (I'll post seperately about that). My heart breaks watching her in pain and tired all day. I'm anxious for the enzymes to start working so that she can eat regularly and get her strength back. Like so many of you, she's been though so much and deserves better than this.
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