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Old 09-20-2007, 06:28 PM   #1
Mary Jo
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Susan G. Komen Race For The Cure

Good Evening Ladies and Gents,

On Sunday, September 23rd, my sister, myself and 2 friends are participating in the Susan G. Komen Race For The Cure in Milwaukee, Wisconsin. I've always wanted to particpate in this event but haven't as of yet. Sunday is the day. I'm sure it will be an awesome experience with waves of emotions being felt.

I want each of you to know that YOU will be in my thoughts and prayers as I participate. I will think of you - pray for God's Peace for you - and thank Him for allowing me the opportunity to "meet" you in the cyber world.

Me and sister are doing the 5K walk and my 2 friends are walking a mile walk. There is a continental breakfast for the survivors and a guest. There is a survivor recognition and many other events planned. I'm looking forward to it all and am thankful I am here to participate.

So dear friends, my heart holds each of you and I pray a CURE is close. As the commercial for the Susan G. Komen walk says "one day this will ONLY be a walk"

God's Peace to all,

Mary Jo
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"Be still and know that I am God." Psalm 46:10

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 09-20-2007, 06:53 PM   #2
Sheila
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Mary JoI did it here in Illinois a few times...by far one of the most emotional rewarding things I have been in....YOU GO GIRL!!!!!!!!!
We will be rooting you on in spirit and love.
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"Be kinder than necessary, for everyone you meet
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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Old 09-20-2007, 08:02 PM   #3
hutchibk
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It is so much fun and uplifting - I have done the one in Austin the last 3 years. I am so sad that it looks like I won't be in town for the one this year...

Have fun MaryJo!
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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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Old 09-20-2007, 08:05 PM   #4
Faith in Him
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Best wishes for the walk. I'm sure it will be a great experience. I have found that there is nothing like being around a bunch of survivors. They are wonderful people. I am doing one in my area next week. Believing for a cure, too.
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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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Old 09-20-2007, 08:17 PM   #5
Sherryg683
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One tip, be sure you get in the right line or you'll get some mean looks. I participated in it right after I was diagnosed. They had all the survivors get together before the walk. I didn't notice that there were sections divided into how many years you were a survivor. I accidentally got in the 30 years and more survivor section and was quickly told by some old gal that I need to go back down with the "babies" where I belonged..LOL. I thought it was funny but I will make dang sure I don't make the same mistake again...sherry
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Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 09-20-2007, 08:30 PM   #6
Vanessa
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I am participating in the Houston walk on October 6th. I will have to remember your advice Sherry. I have already received my survivor t-shirt in the mail.
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Old 09-20-2007, 09:09 PM   #7
StillHere
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Mary Jo
Maybe I will see you at the walk on Sunday. My daughter has been the co-chair for getting corporate sponsorship for the Milwaukee rally for the past two years. Unfortunately they do not have enough volunteers to cover the many hours it takes all year long to make this happen. She has been lucky that her boss has allowed her to participate in numerous conference calls concerning the Rally during company time. She said at times it is like having a second full time job so she is bowing out after the rally this Sunday. My husband, I and the kids are also golfing for the cure on Sat. 9/22 at the Bog. We have done this as a family outing for the past 3 years. Great fun, wonderful raffles. I won a hybrid # 7 rescue iron the first year. Wish I had a whole set of those. My son won the 50/50 raffle and gave $100.00 of his $350.00 winnings back to the cause. He would of given more back, but he was going to Las Vegas for a bachalor party the next week. I was very proud that he even thought to give a portion back when he won. Looks like it is shaping up to be a gorgeous weekend weather wise. Peace Karen
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04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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Old 09-21-2007, 08:59 PM   #8
Debra
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Marejo -

I've done the walk twice in Minneapolis and it is a very uplifting experience. It is so calming to be surrounded by so many women that are "fighting the fight" together. I didn't feel alone for the first time when I entered that walk!
Thanks for thinking of all your "sisters"!
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Debra

Diag. 11/05 at age 40 triple positive
3.8 cm tumor and 9 mm tumor
Stage IIb/SN positive(no other nodes)Grade 3
Bilat. mastect. 12/05 (Rt.prophylactic) followed with AC/taxol/Herceptin/tamoxifen then switched to arimidex after hysterectomy in 12/06. August 07 switched to Aromasin due to severe jt. pain from Arimidex. Nov. 2011 No more meds and NED!
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Old 09-23-2007, 08:09 AM   #9
Emelie
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Wink Get to two 2 walks

Hi ladies,
I got to Sleep in for the Cure in St Louis and now that I live in Denver, have volunteered to help set up a booth in the Pepsi Center on Sat. before the race and will probably walk Sunday morning in the race. Not sure of that as we leave at 5:30 PM the same day for Florence. I am sure I would sleep better if I walked.
All I can say is I feel so honored and so glad I am able to participate in this cause.
Here's to all of us survivors and our spirit and dedication to bet this monster.
Will walk with a smile for all of us.
Emelie
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Old 09-23-2007, 02:29 PM   #10
Patricia
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Komen SF!

I did the Race for the Cure today in SF with my daughter and friends. It was very moving and hopeful, especially when the 35+ year survivors got on stage! The tears were flowing by then... Hope you had a good walk too Marejo!

In SF alone we raised almost $500K!!
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age 37 @ dx 7/21/05: IDC 1.5cm, grade III, Stage 1c, ER /PR+, HER2+,
7/29/05: Partial Mastectomy
dx 8/15/05: Papillary Thyroid Cancer
9/15/05: Total Thyroidectomy
A/C X 4 DD, 11 weekly Taxol + Herceptin, + 9 mos Herceptin Alone, 36x Rads, Lupron, Aromasin
7/29/07: 2 years NED :)
8/6/07 Oopherectomy (Lupron no more! :-)
Aromasin & Estring plus Synthroid and supplements
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Old 09-23-2007, 06:13 PM   #11
IRENE FROM TAMPA
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Thumbs up How awesome was your walk Marejo

I did the Susan Komen 3- day walk last year and never experienced anything so wonderful. We encountered so many many wonderful,beautiful giving people. I cried for two weeks just thinking about it afterward.

We are getting ready again to have ours here in Tampa on Oct 19th for 3 days and am looking forward to having a great time again and knowing that we are raising money for more research.

Hope you had a great time and you must tell us about it.
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Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial

"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."
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Old 09-23-2007, 06:20 PM   #12
Mary Jo
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Hi Irene,

I did have a wonderful time. Very wonderful. The weather was simply perfect - light breeze, sunshine and 73 degrees. The most amazing people and lots of support and love.

My sister and I walked in the 5K walk (3.1 miles) and my 2 friends did the 1 mile walk. We met up after our walks were concluded and walked around through all the tents set up - give aways etc. We participated in the survivor parade (me and my friend - sis and other friend are not survivors). Me and friend walked in the 0 - 5 year survivor parade. As the survivor years went up and the speeches were said there were tears shed.

A nice day. As I walked I did thank the Lord for me being a live - for the beautiful weather and for all I've learned along the way.

Love and God's Peace,

Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10

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 09-23-2007, 06:45 PM   #13
Sheila
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Marejo and Patricia
Thank you both for walking today....for yourselves and for all of us....we are providing for our future with the monies raised in this walk....Irene, you are next!
__________________
"Be kinder than necessary, for everyone you meet
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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Old 09-23-2007, 08:29 PM   #14
Patricia
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So glad you had a great day Marejo. It was the 1st time for me. I wanted to do it last year, but felt that I really wasn't emotionally or physically ready to do it. After today, I wish that I had at least gone and felt the love, support and most of all hope that I felt there today. I walked with my daughter and some friends and it was up and down the Embarcadero in SF. We got back to the plaza just in time for the survivor walk and I walked with the <5year survivors. I had my 18 year old daughter go up on stage with me, because I needed her support and arms around me. One by one, each group went up and the crowd (survivors and others) all cheered each time. Once we were all on stage a woman from Dockers who lost her Mom to bc sang Melissa Etheridge's "I Run for Life". We were all on stage and were swaying to the song while the press and the crowd took pictures. I had every one of my Her2 sisters with me in my heart when I was surrounded by all those survivors, especially those of you that are in active treatment and all our special angels.

I really encourage anyone here who has not participated to do it - it will warm you and if you can't do the walk, just go and feel the love! and like Sheila said - we are providing for our futures! and the futures of our children and grandchildren

Hugs,
Patricia
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age 37 @ dx 7/21/05: IDC 1.5cm, grade III, Stage 1c, ER /PR+, HER2+,
7/29/05: Partial Mastectomy
dx 8/15/05: Papillary Thyroid Cancer
9/15/05: Total Thyroidectomy
A/C X 4 DD, 11 weekly Taxol + Herceptin, + 9 mos Herceptin Alone, 36x Rads, Lupron, Aromasin
7/29/07: 2 years NED :)
8/6/07 Oopherectomy (Lupron no more! :-)
Aromasin & Estring plus Synthroid and supplements
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