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09-20-2009, 08:16 AM
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#1
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Member
Join Date: Aug 2009
Posts: 14
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Her2 Pos mestasis average life expectancy
I would like to hear stories about women with Her2 Pos matastised to bone.
__________________
Aug 07: 2 tumors 5cm and 2cm in R Breast. Hormone+/Her2+. R Mastectomy and 17 of 21 Lymph nodes positive.
TX: chemo, A/C and Taxotere
Mar08: Radiation 33 days. Herceptin 1yr.
Arimedex Daily for life.
R arm Lymphadema. July 09: Pet scan. finds tumor in L shoulder blade (scapula)
Treatment: Zometa IV Monthly, Monitor growth markers and Bone scans.
The Dr.'s will check markers to Oncologist: Dr. Muss @UNC & Dr. Cho CCHC New Bern NC.
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09-20-2009, 10:13 AM
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#2
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Her2 Pos mestasis average life expectancy
I don't have mets myself, but know several women who have mets to the bone and are doing well. One of them has been NED for over 4 years now.
Love
Jacqueline
__________________
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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09-20-2009, 10:20 AM
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#3
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Member
Join Date: Aug 2009
Posts: 14
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Re: Her2 Pos mestasis average life expectancy
Thank you your the first to reply
__________________
Aug 07: 2 tumors 5cm and 2cm in R Breast. Hormone+/Her2+. R Mastectomy and 17 of 21 Lymph nodes positive.
TX: chemo, A/C and Taxotere
Mar08: Radiation 33 days. Herceptin 1yr.
Arimedex Daily for life.
R arm Lymphadema. July 09: Pet scan. finds tumor in L shoulder blade (scapula)
Treatment: Zometa IV Monthly, Monitor growth markers and Bone scans.
The Dr.'s will check markers to Oncologist: Dr. Muss @UNC & Dr. Cho CCHC New Bern NC.
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09-20-2009, 10:39 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Her2 Pos mestasis average life expectancy
Char,
this will sound like a non-answer, but in truth there is no one answer. So much depends on the individual's response to therapy and the biology of the disease itself. And, with Her2+ disease all the statistics are old anyway and the prognosis has changed so very much with Herceptin and other targeted agents.
__________________
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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09-20-2009, 10:49 AM
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#5
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Member
Join Date: Aug 2009
Posts: 14
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Re: Her2 Pos mestasis average life expectancy
Thank you.
Loved that answer, I'm going to change the subj line to need to hear about Her2 pos mets.
__________________
Aug 07: 2 tumors 5cm and 2cm in R Breast. Hormone+/Her2+. R Mastectomy and 17 of 21 Lymph nodes positive.
TX: chemo, A/C and Taxotere
Mar08: Radiation 33 days. Herceptin 1yr.
Arimedex Daily for life.
R arm Lymphadema. July 09: Pet scan. finds tumor in L shoulder blade (scapula)
Treatment: Zometa IV Monthly, Monitor growth markers and Bone scans.
The Dr.'s will check markers to Oncologist: Dr. Muss @UNC & Dr. Cho CCHC New Bern NC.
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09-20-2009, 11:49 AM
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#6
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Re: Her2 Pos mestasis average life expectancy
Chrisy is right... you gotta be careful considering averages and statistics on you personal path. It can be an emotional/mental downfall. Her2 cancer treatment is becoming increasingly novel and individualized, and averages and statistics don't speak to "anecdotal" (that word is incredibly dismissive and shouldn't be used anymore, I think I will start that trend...) clinical successes.
All that said, I have had one posterior ilium bone met that has remained stable for over 3 years, and one C-3 neck bone met 3 years ago that appears to have disappeared. I have, however, had brain mets in the last 3 years that we have disintegrated via fantastic brain met radiation zapping technology.
__________________
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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09-20-2009, 12:27 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: Her2 Pos mestasis average life expectancy
Char - I have bone mets. You can see in my signature the history of my dx and treatment. The bones mets have progressed, but still I don't experience pain or restricted because of them. I feel good and hope to continue feeling good for a long time -- YEARS and YEARS!
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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09-20-2009, 12:41 PM
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#8
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Member
Join Date: Aug 2009
Posts: 14
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Re: Her2 Pos mestasis average life expectancy
Thank you Pam, I nice to relate to your similar conditon. I have pain but I don't feel sick.
__________________
Aug 07: 2 tumors 5cm and 2cm in R Breast. Hormone+/Her2+. R Mastectomy and 17 of 21 Lymph nodes positive.
TX: chemo, A/C and Taxotere
Mar08: Radiation 33 days. Herceptin 1yr.
Arimedex Daily for life.
R arm Lymphadema. July 09: Pet scan. finds tumor in L shoulder blade (scapula)
Treatment: Zometa IV Monthly, Monitor growth markers and Bone scans.
The Dr.'s will check markers to Oncologist: Dr. Muss @UNC & Dr. Cho CCHC New Bern NC.
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