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Old 03-14-2009, 05:03 PM   #1
mmoons
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lovely

Sweet Vickie-

What a lovely post. You are so eloquent! Thank you for sharing and for your brave, open, honest words!

Maureen
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Maureen


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 03-14-2009, 06:35 PM   #2
Ceesun
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thank you so much Vickie. Sometimes my heart just aches...it is a real balm to know others, I don't even "know," share the joys and understand the anguish. Ceesun
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Old 03-15-2009, 07:52 PM   #3
vickie h
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Loving you all so much this evening. I can't imagine this journey without you and so I give thanks for your love and support and reach out in gratitude. Loving my dearest sisters always, vickie
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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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Old 03-16-2009, 06:11 PM   #4
Barbara2
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That was a beautiful post, Vickie. You are able to write what many of us feel, but are unable to express in such an insightful way.

I think one of my biggest frustrations is not being able to share with others, or to express my feelings to others in a way that will give them somewhat of a clue as to what goes on in the minds and lives of cancer survivors. It feels like my friends think that yes, Barb had a tough time with her initial cancer, but now that is over and she is back to normal. (What would we all give for just one day of not thinking about cancer; one day to experience what we had before cancer...)

I even feel a bit resentful at times (and feel guilty about that) that "friends" are clueless. Seldom am I asked truly heartfelt questions as to " How are things going for you?" It's like the cancer never existed.

Then my logical mind kicks in to remind me that no one ever truly knows or understands ANYTHING unless they have experienced it first hand. So, lighten up with your friends, Barb. They've never been down the road you are on and hopefully never will be.

I am copying your post and adding it to my cancer files, so it can be read again by me and who knows; maybe others, when perhaps they ask, "How are you doing, Barb?

Take care everyone...
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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Old 03-16-2009, 06:35 PM   #5
Mary Anne in TX
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I know what you mean Barb about not being able to communicate to non cancer people what I'm feeling or being inside. I quit trying.
I was talking by phone to a good friend in another town the other day and we were sharing our past few weeks. She cares for a cronically ill daughter and I for a way to healthy granddaughter. We always laugh a lot about our situations cause it makes us feel better. She said maybe someday we'll get back to our own life...before she could go on, I realized and said; "this is our life now"! We laughed and laughed as we realized that this (whatever is now) is our life. It somehow gave me amazing release from stress just to know that whatever is now is what is my life. I won't go back or forward or wherever without my brain's battle or body's battle with cancer. I won't go anywhere without my struggle to try to be an adequate substitute parent. And I won't go anywhere without all the joy from the people I've encountered while dealing with this mean disease. I hate the disease, but I love the people brought into my life because of the disease.
I'm finally learning that it's ok to say things however they come out with this forgiving group. Sometimes my brain is in gear and sometimes it's on vacation.
Prayers for all who need a break or a miracle.
ma
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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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Old 03-17-2009, 02:06 AM   #6
DanaRT
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Vickie, You have beautifully captured many moments of what my experience has been for the last 16 months. You are a gifted writer and a treasured member of this group of wonderful people. Thank you for sharing. On to living....
Love,
Dana
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-Dana-

]
Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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Old 03-17-2009, 06:24 PM   #7
vickie h
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Dana, thank you so much for your loving words....sending you much love and hugs, Vickie
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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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Old 03-17-2009, 06:40 PM   #8
StephN
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Wink

Hello everyone -
I found a quote that really boils it down!

"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us."
- E.M. Forster

Easier said than lived, but I think this is where I am. I gave up long-term plans when I became stage IV, but that does not stop me from planning things in shorter time increments. Energy and finances allowing.
__________________
"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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