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Old 05-07-2008, 04:23 PM   #1
Joy
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Surgery over

What a dork I am I accidentally posted this in Chrisy's good news-so sorry-was absolutely not meant to be there.
<HR style="COLOR: #cc0033" SIZE=1><!-- / icon and title --><!-- message -->Well, I am very happy to report that I had my oophers out yesterday and it went really well. I got into surgery early. The staff and OB/Gyn were fabulous. My friend Martha was my angel. She went with me and hung out with me afterwards. I woke up giggling and feeling totally normal (for me anyway). Almost NO pain and have been up and walking around and visiting and all in all feel T-RIFF. They even kept us there longer because as they said, "we were so much fun." It was like a salon. We chatted about boys and sex and kids and school and periods and everything. The nurse kept coming in and pulling up a chair to see what we were laughing about. Martha brought me home and got us pizza and my other best friend showed up. I got flowers, e-cards, phone calls, dumb magazines and my new man is bringing over homemade bread for me today. As bizarre as it sounds it was a great day.

I only lost it when Martha and I hopped in her car after I said good-bye to my boyfriend. She asked me how I was doing with all of this and I cried and cried and babbled about not wanting to feel like less of a woman or be seen as less of one, espcially with this new relationship. And that I was mad to have to deal with this at all (sound familiar to ALL of us). And that this better work. I want to be around for my kids and for Luca SO much. I have never experienced love and caring for someone with such reciprocation EVER. I want this future. I want it for all of us.

I keep trying to find studies on oopherectomy and/or faslodex/herceptin success. I have found some, but not a lot. I have been lucky to have been such a responder to so much and I have all this fear that this will stop.

My onc called on friday and as you know it is always scary when they call you at home to chat. I had the total parasympathetic reaction to her voice and then she told me that she had finally gotten a hold of Dr. Geyer in Pitsburgh who pulled together the tykerb/xeloda trials. He said that he felt we were on the right path and that he is very excited about hercptin dm1 and he told her to tell me that he was proud of me for hanging in so well and doing so much. He also said to tell me to not lose hope as there are so many other things in development. He is excited about heat shock protein stuff, newer egfr inhibitiors, the small but successful trials with herceptin and avastin. And he said he was very impressed with my success. I hung up and burst into tears from relief and the love that I felt from this doc who doesn't even know me and whose opinion in this onc world means something. People are good aren't they?

So I am trying to take this to heart, still a struggle. I would love any information on stage IV response to oophorectomy/endocrine therapy with herceptin in er/pr+her2+ dx's. And any hope for libido if it gets lost, although I am so in love and attracted to this man that right now I am not as worried as I was.

Again, I'm very sad and sorry for our recent loss and some struggles. I think about all of you here and in heaven so much with such love and respect. But I think we should all feel comfortable with sharing good things still as for those of us here it helps so very much. I say this as I struggle with it myself. But we need to stick together.
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with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 05-07-2008, 04:50 PM   #2
Mary Anne in TX
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Joy, there are lots of good "guys" and you're one! What a day you had. Really happy and proud for you. 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 05-07-2008, 05:37 PM   #3
chrisy
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Yes Joy, you are such a dork! I'm glad you saw the error of your ways and posted this GREAT thread out in the daylight where everyone could see!!!

You always make me smile even when you are making me cry. This post however, made me smile, laugh, cry, and shout for joy!!!!! People are very, very good. In fact, they're God's best things. I'm glad that so many rainbows are finding their way to you.

I reckon one of the newshounds will hunt down some studies for you.

I can share that in the talk I heard in San Antonio by Dr. Kent Osborne (utterer of the "c" word and of our "favorite study" - the one where you block all the pathways and the cancer dies and never comes back) he showed slides of those studies combining all the nibs and mabs and various suppression of estrogen, including oophrectomy.

The key is to close all the doors, and I think you have definitely closed a major door here.

Good gracious, that was one heckuva sentence. I'm just so afraid I'll end up like comma-less Flori that I'm economizing on the period key. Also, I'm showing my solidarity with my post-ooph hero by doing without periods whenever possible.

See Joy, you have made me giddy with delight over your wonderful roller coaster ride. Now who's a dork?

Much much love, my friend,
chris
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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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Old 05-07-2008, 06:03 PM   #4
Mary Jo
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Once again you brought "joy" to my heart with your post. You ALWAYS do that.

I'm glad you had so much fun while at the hospital (hmmmm, wild and crazy you) and I'm glad it all went so well for you.

You are right Joy, we do need to stick together. "Bad" news come right a long with the good and as we shed tears together we also need to rejoice and share happy things together.

Thanks for bringing "joy" to me today and as always I ask God to continue to bless you with His peace and love.

Mary Jo
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Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 05-07-2008, 06:05 PM   #5
Becky
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Joy

I am so glad you are joyous and I am joyful for you. You have been surrounded by winners all around.

I had an ooph at 46 and I am still all woman (was premenopausal at the time and got my period back from chemopause). You'll be fine. Nothing alittle warming lubricant can't fix (if you even need it).

You make me smile every time you post and that is a real gift to all of us. Rest up.
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Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 05-07-2008, 08:34 PM   #6
Bill
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Joy, I wanted to say something to you, but OMG, I can't quit laughing at Chrisy "yes, Joy, you are such a Dork!" I'm snorting even and my stomache hurts. Joy, thanks for being such a joy!
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Old 05-08-2008, 12:03 AM   #7
harrie
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Joy

Hi!
Hey, I can really feel the joy and happiness in your words!! Outstanding!!! Loved reading your post, Joy!!
I also had an oophorectomy right after my bilat mastectomy. It was a breeze. I flew from Hi to Ca on Dec 20th, had the surgery on the 12/22 and flew back to HI on Christmas day to surprise my family!
Take care and keep heading in the right direction!
MA
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 05-08-2008, 06:52 AM   #8
Hopeful
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Joy,

So glad to hear things went so well for you. The news from your onc is very promising, and music to a lot of ears here, so thanks for posting. Take care of yourself.

Hopeful
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Old 05-08-2008, 07:47 AM   #9
Sheila
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Joy...
As always, your post makes me laugh and cry at the same time.....dork...now there's a word from the past....
it sounds like out with the old, on with the new.....glad the surgery is over....now enjoy life!!!!!
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is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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