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11-08-2008, 08:47 AM
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#1
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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'Dying Mum'
Well my friends ~ it's been bit of a round trip to fully get back here and share with you all ~ though I am never far away in heart & Spirit.
Various scans show 'multiple' mets to bones, lungs & brain. I have just recently completed 2 weeks of whole brain radiation in Brisbane and then ended up in Palliative care, here at home as things got pretty distressing here with all the build up - not of the treatment so much - but just coping with the western medical system! (long story....)
I went straight from PC to our forum that we had organised for the National Breast Cancer Awareness Day!! (Long Day!!) The topic was Aboriginal Women and Healing through the Breast Cancer Journey ~ our Guest Speaker was a lovely woman who is Her2 + and told a wonderful story of healing. It went real good!
Then the local newpaper interviewed some of us - and the reporters were wonderful women - but they were totally shocked and overwhelmed and started crying! - anyways this is the story they printed about me and my bubbas!! - you dont have any control about content - it was pretty shocking to me too!!?? (Oh that's right - I'm dying!!??) - dont know what to think about all this right now ~ just try and focus on the positive right now - it came from a good heart.
And I HATE the photo of me!! Doesnt look like me at all!! Any way its done now - cant change it - and I'll have to get another copy that you might be able to read!
So things have been up & down. Then I got a temp of C38.4 just after I finished me 1st 2 weeks of Xeloda - but seem to becoming good now after I started on A/B's.
I have been TOTALLY EXHAUSTED - more than I could ever have imagined! Where do you folks get your energy from???? I guess sometimes things can be abit more difficult because we are caring for our beautiful bubs - but dad does most of that work - because I can do so little :-(( - which really upsets me by the way.
So after my little complain! I remember to be grateful, commit to my own grieving process - which includes cries and laughs, my own sobriety, prayer & meditation, spending time with my gorgeous family and friends and coming here when I can - I do try and drop by and read even if I dont have the energy to post.
Much love and blessings to each and every one of you. You are a blessing in my life.
hermiracles.
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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11-08-2008, 01:08 PM
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#2
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Marilyn,
I'm sorry that you had to endure the press under these circumstances.
Despite their dire predictions, it seems like you were very busy with the National Breast Cancer Awareness Day. And how do you keep up with the bubbas? No wonder you're tired. They're adorable!
I'm praying that the Xeloda and Tykerb work magic for you.
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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11-08-2008, 01:22 PM
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#3
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Marilyn, your attitude is amazing and inspiring. I am sure you contributed greatly to the awarness day.
You mentioned your sobriety, prayers and meditation. I have found great comfort in the principles of recovery too.
God bless. And keep the faith (I know you do)
Love, Bonnie
__________________
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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11-08-2008, 01:44 PM
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#4
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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You are simply amazing, Marilyn! AMAZING!!!
And I think you're rightfully tired! those little adorable bubs are so lucky to have you for a mom!
I'm still prayin' for ya and believing for a super miracle!
So good to know you!
You bless us all. 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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11-08-2008, 02:11 PM
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#5
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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GOOD ON YA!
But it is always kind of a shock to what the press will write. The editors could have used a little less flagrant headline, for Goodness sake!
I hate to see us used as a way to sell papers. The headline makes it sound like you are on your deathbed, which WE know you are NOT!
Would love to have a link to the article so we could read it. Just a link should do it. Then we can all send "letters to the editor" and set them straight!
Just get all the rest you need, and don't fight it so hard. We know you want to do what you can for your children, and you do. Just being there to let them crawl all over you and feel your love is good enough for them.
Thanks for the update.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
Last edited by StephN; 11-08-2008 at 06:29 PM..
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11-08-2008, 02:43 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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Oh my, all I see is a beautiful Mom and babies.
I guess a caption could be put next to anyone stating that they are dying. Right? I am a mets gal myself and it really aggravates me when others act as though we are the only ones with a terminal illness. Life is terminal and it always ends in death.
I wish you love, hope and peace. You are so brave to put yourself out there.
Carolyn
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11-08-2008, 03:22 PM
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#7
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Marilyn,I'm sorry you had to see a headline like that just to sell newspapers but I also see a lovely woman with her two babies. You look great, and your happiness in your children shines though. Keep fighting !!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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11-08-2008, 09:54 PM
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#8
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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The Press
Marilyn, Your babies are beautiful, as you are also. Maybe the press will help spread some awareness (any awareness) of what we go through. I am sending you my prayers and some energy and lots of 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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11-08-2008, 10:08 PM
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#9
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Hello folks ~ thanks so much for your friendship and support. It makes a difference thats for sure.
We went to a great meeting this morning ~ Spiritual Concept ~ always love those meetings and then we went for lunch afterwards ~ which was nice with the bubbas. BUT everything is such a struggle - getting in and out of car etc etc etc - and most of this falls on Anthony - my hubby - I try and help out and we have lot of services lined up to help us - but it does put a strain on our relationship..... oh well, we do the best we can ODAAT..... one moment at a time.
Then I rounded things off with vommitting +++ out the car window. I need to take a breakthrough now and have a nap. A is trying to get our gorgeous ones to settle.
Thanks so much for being here friends - it makes the journey not so lonely.
I can't stop thinkin about sweet Lily.
Blessings all
Hermiracles (Marilyn)
Oh and the link to the actual article... never thought of that Steph.... good idea..thanks:
http://www.northernstar.com.au/story...-start-school/
the steroid-affected round face is very attractive eh? not!! LOL!!! ;-)
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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11-08-2008, 10:25 PM
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#10
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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sweet Marilyn, as always, for what it's worth in this crazy scheme of things that we have to deal with, you and your bubbas and your family are in my thoughts and prayers. I guess the media there is much like the media over here. They rope in a larger audience when they snare your heart-strings. You are an amazing woman, and you keep fighting the good fight! Love and Peace to you and yours, Bill
__________________
For Nicola
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11-08-2008, 11:07 PM
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#11
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Dear Marilyn,
I always read your posts and I have come to admire you sooo much. I admire your strenght and energy to fight this terrible disease, as well as the strenght of all our sisters here. I will go to bed tonight with a special prayer for you dear. I send you all my love to you, even if we are sooooo far away.
Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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11-09-2008, 05:18 PM
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#12
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Senior Member
Join Date: Jul 2008
Location: New Boston, NH
Posts: 275
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Marilyn, Although I haven't been on this board for long. You are truly an inspiration to us all. You are a beautiful woman/mother. Contineu to keep your spirits up and when your too tired, we will guide you through those days. Your babies are gorgeous and they know their mother is a fighter! I will continue to pray for you.
__________________
-Sarah-
Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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11-09-2008, 10:46 PM
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#13
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Marilyn,
I have been thinking of you and was happy to see you posting.
My goodness, could you not have gotten into the NY TIMES!....I am sorry but that paper has the look of what we call here in the states a Rag Newspaper, which is not
a high rating...I feel they took advantage of you. But
we sure would appreciate a link to that paper as Steph
suggested so we can all have a wack at them!
As always your babies look beautiful and so do you,
all mothers are beautiful. You keep up the strong fight that you do...I am strongly praying for you and all in your family..
Much love,
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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11-09-2008, 11:45 PM
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#14
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Jean -
Check at the bottom of Marilyn's post for the link - it's under her name.
Just goes to the article, which is actually a bit tamer than the headline - thankfully.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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11-10-2008, 08:36 AM
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#15
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Marilyn you're inspiring. I'm counting on the doctors getting it wrong and a miracle. Your babies are beautiful.
hugs and love
sarah
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11-10-2008, 09:10 AM
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#16
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Senior Member
Join Date: May 2007
Location: DFW area (TX)
Posts: 431
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Marilyn,
Just a note to let you know we are thinking of you. You are a profoundly inspirational woman.
Thanks for being you.
Love and Peace,
Terri
__________________
Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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11-11-2008, 10:03 AM
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#17
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Senior Member
Join Date: Jun 2007
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
Posts: 2,999
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Marilyn
I prefer to say you are fighting for your life, not dying but that is just me. I love the article and so wish I could actually read it in full. You are an amazing person who is truely inspiring to all you come in contact with.
I LOVE the picture of you three. Right up there with 'priceless'.
Sending love and prayers to the whole lot of you>>Believe51
PS: Just read the article and loved it. What a pleasure it is to know such an inspiration!!!
__________________
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!!
Last edited by Believe51; 11-11-2008 at 10:07 AM..
Reason: Read article
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