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04-01-2008, 11:19 AM
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#1
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Any hope to offer, liver mets, bilirubin 2. and counts high
Hi All,
Trying to find someone who has had similar challenges and done well. I was diagnosed mets 25 months ago. Bones, Liver, Skin, Lymph Nodes. Been treated with all anti hormonals, Gemzar, Herceptin (constantly), Tykerb (6-months), Zometa. All seemed controlled and recent pet showed progression in bones and no activity in the liver. One week later blood work shows HIGH ALK, AST, ALT and bilirubin at 2. I just went for an ultra sound and will follow with a CAT of abdomen.
New chemo treatment Abraxane started today.
When I started this journey I had 7 liver mets but my liver function was perfect. I feel more afraid now because of the poor liver function test and strange because the PET shows nothing in the liver.
Anyone else have something like this? How has Abraxane been for liver mets?
Thanks for you support.
Carolyn
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04-01-2008, 03:05 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Carolyn,
You've faced down some pretty big challenges already!
I also am dealing with liver mets, and when they were first diagnosed in 2004 - and right up until this most recent treatment (T-DM1) - my liver enzymes had always been normal. The T-DM1 has caused a "level 2" toxicity to my liver, with elevated ALT, AST, Alk Phos very high.
So, it could be a reaction to the new chemo - you are doing the right thing having it checked out. Try not to panic (easy, huh?) and keep working on getting some answers.
__________________
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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04-01-2008, 03:24 PM
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#3
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Hi Chrisy,
Yeah we've all faced big challenges - welcome to Fear Factor Breast Cancer edition.
Thanks for answering. I was going to try Xeloda, but when the bili went up we decided we didn't have time to wait. Once I have the CAT tomorrow I will then go to a GI doctor to check to see if I need a stent. I am pretty sure that my numbers will continue to climb from the livers reaction to Abraxane.
Take care and I wish you all of the best!
Love, Hope, Peace,
Carolyn
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05-08-2008, 02:43 PM
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#4
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Update for May 08
Hi Friends,
Wow, it was a very rough ride. My bili shot up quickly from 2 on Tuesday to 6.6 on Friday (April 4th). I called the doctor to report yellow eyes and strange colored BMs and urine and was sent to the emergency room for 9 days. We located the problem. The lymph nodes around the bile duct that leads away from the liver were swollen and closed the bile duct (as I understand it). My doctor had started Abraxane on Tuesday when the Bili numbers were at 2 and by Friday they were 6.6 & ALK, ALT, and SGOT were more than 10 times the top of the normal range. Each "specialist" that visited me while in the hospital scared the sh#t out of me saying stupid things like - "wow you don't look anywhere near as bad as your chart" and "I think that I wouldn't mind dying of cancer" ...I swiftly replied that I want to die of old age - thank you!
Well the good news is that they put a stint in the bile duct and gave me Carbo with the Abraxane and I am happy and relieved to report that my counts are all NORMAL!!!!! Total Bili is 0.7. The nausea was really bad for 2 weeks but they put me on Aloxi and I feel much better...just really weak. Doc says I will stay on Carbo with abraxane for 8 weeks and then drop the Carbo.
I am bald but found a really cute wig and I call her Victoria. The first day of my baldness I went to my 9 year old son's school for lunch. He was really scared about having a bald Mom...what did he say without missing a beat when he saw me???? Wow, Mom you look HOT!!!!!!! How is that for moral support?
Love, Hope, and Peace
Carolyn
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05-08-2008, 03:11 PM
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#5
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Well, Carolyn! You've made the day better with your great news! All the good health news is wonderful, but I LOVE your son's attitude!!!!!! So happy for you! 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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05-08-2008, 04:03 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Good for you, hot mama! Glad to hear they figured out the problem and that things seem to be back under control.
Sounds like you could nominate some of those specialist for the stupid things people say wall of shame! Great answer, I'll have to put that one in my repertoire.
__________________
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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05-08-2008, 04:38 PM
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#7
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Glad things are turning around. Gosh, some of these doctors and the things that fly out of their mouths. It makes you wonder.
Take care,
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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05-08-2008, 04:55 PM
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#8
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Carolyn,
Thanks for sharing the good news. Glad they located what was causing those out of whack liver #s.
all the best
caya
__________________
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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05-08-2008, 07:16 PM
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#9
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Carolyns,
That is a pretty terrific update!! I am so happy that your counts are looking good!
Your boy sounds like a cutie. I'd like to give him a big squeeze!!
Hugs,
Lexi
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05-08-2008, 08:19 PM
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#10
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Thank goodness! Thanks for the good news.
__________________
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
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