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01-05-2009, 06:14 PM
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#1
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Results and plan in 2009
My oncologist once again commented on what a role model I am, after another clean scan and normal blood work. Well, I am just trying to be ME!
My last brain scan also showed no signs that the cancer is active there either. I told her I WILL continue to be the exception!
After 7 solid years on Herceptin, the plan right now is to take a 3-month break from my drug - a Herceptin Holiday. She approves and we have a plan for following up at 6 and 12 weeks. Once again going out on a limb - onc says no cure, but I am a long term NED at this point.
One of the reasons I want to do this is to see what might be the effect on my heart and if I can build up some more stamina. My last MUGA was down 9 points and that is the first time. It will be checked again at the end of the 3 months. I am also spending a little more time at my fitness club exercising (now that the snow is finally going away and I can get into the parking lot!).
The drop in MUGA may be due to all the problems I had with my clotted vena cava last year, but no way to be sure.
__________________
"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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01-05-2009, 06:29 PM
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#2
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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I dont know about your Onc, but you sure are MY role model!!!
Wooohhoooie StephN! I am so happy for you,
Hugs,Marcia
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01-05-2009, 06:45 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Awesome news Steph...
enjoy your "holiday" and many more  Take care and God bless.
Rhonda
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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01-05-2009, 06:52 PM
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#4
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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That's the nicest kind of holiday any of us can ask for! Happy to hear your news Steph. I hope your holiday can be an extended one!
__________________
dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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01-05-2009, 08:43 PM
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#5
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Oh, Steph such good news (not the drop on the MUGA, but the NED part)!! I think a Herceptin vacation is a good thing. I had a drop once, and the 3 month break did wonders for me. I hope the same or better for you. I love the new picture!! Happy new year...Keep up the good work!!!
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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01-05-2009, 09:14 PM
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#6
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Senior Member
Join Date: May 2006
Posts: 3,142
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Results and plan in 2009
Congratulations !! What a great, great way to start a new year !! Keep up the great work. Enjoy the gym and the Herceptin holiday.
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01-06-2009, 04:48 AM
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#7
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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 Hi Steph!
Cheers for many more GREAT years of "modeling"!!!!!
You keep my dream alive! 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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01-06-2009, 06:34 AM
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#8
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Senior Member
Join Date: Jul 2008
Location: New Boston, NH
Posts: 275
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What incredible news. You are definitely a role model to us all!
__________________
-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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01-06-2009, 06:52 AM
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#9
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Steph,
Congratulations on your NED. I love hearing news like yours. It gives me HOPE for the future.
It will be interesting to see how you feel after being off the Herceptin for a while.
Amelia
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01-06-2009, 08:33 AM
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#10
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Senior Member
Join Date: Nov 2005
Posts: 43
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Congratulations!!
Hi Steph- Congratulations! You really are a great role model for all of us!You deserve to get a break.
I used to post a few years ago, but I work now, plus I get upset if I see that someone has passed away.
I tried to send you a private email, but I don't know if it worked. Is there an email address where I can write to you? Thanks for all your help and God Bless! Cathy
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01-06-2009, 10:00 AM
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#11
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Senior Member
Join Date: Apr 2008
Location: me & my three HANDSOME grandsons!!Jacksonville, Arkansas
Posts: 354
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I tell yah, Steph, You are a comfort to many that you don't even know about. To think that any problem I might have, you've already been there, done that, conquered it!
Thank God for you, girl! 
__________________
Terri B.
46 yrs. young
Dx IDC 3/6/08
1.5 cm & .6 cm grade III, Stage IIA
es/pr- Her2+++, 9/9 richardson
Double Mast w/expanders 4-14-08
3/9 nodes positive.
additional excision rt breast 4-25-08
weekly T/H x 12 (6-2-08) Done!
FEC x4 (9-8-08) Last one 11-10-08!
Herceptin complete 8/10/09!!
33 RADS DONE 2/13/09!
rt. breast biopsy 3/20/09 .. B9!!
reconstruction complete!
DEEEEEEported on 5/19/10!!
almost 5 YEARS NED!!
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01-06-2009, 11:01 AM
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#12
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Senior Member
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
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Congratulations Steph! Enjoy your Herceptin holiday and good health.
Karen
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01-06-2009, 11:34 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Decisions, decisions!
Hi Steph!
Jeez, how comparatively simple life was BD (before diagnosis)! Disciplined diet and exercise do seem to make a lot of difference, so I send lots of kudos to you for keeping that as part of the plan. Have you met any others at the cancer center who might be somewhat comparable to your situation? Don't forget to consider the value of natural vitamin D exposure! At present I am feeling nervous about the lack of it here this year because normally I have been able to get at least 15 to 20 minutes here and there between the snow storms, but this year that simply has not been the case.... I've been taking extra vitamin D3 (but keeping it around 1500 to 1800 IU). I hope you are having more luck with it in Seattle!
A. A.
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01-06-2009, 12:08 PM
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#14
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Delighted to share in your good news Steph,enjoy the holiday and I hope you continue to do as well as you have for many many years.
You ARE a role model!
__________________
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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01-06-2009, 12:40 PM
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#15
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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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Blessings
I am finally getting a moment to tell you how my heart has been singing all day with this news! You have always been a wonderful inspiration of determination, strength and hope. You are a wealth of knowledge and support, your friendship is my gold. It is with total joy that I write this post as my heart signs, out of tune but you can hear the pleasure in my voice.
Tears fill my eyes as I go over and over your words. So my special friend, this news has completed another tough day for me in cancerland. I thank you for your friendship and for the renewed inspiration. You are a truely valued family member here and I could not be any happier than if this was news for the Mighty Oak!! I love you so much. You rule Steph! Salute>>Believe51
__________________
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!!
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01-06-2009, 05:18 PM
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#16
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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woo hoo!
Congratulations StephN!
I agree on the role model part. Definitely inspiring me. I'm learning so much from you and the other amazing people here. I want you you to know your contributions to this site are helpful to me. I've only been on this journey a few months and it's so good to have company, although of course I wish no one had to be in this club.
I finished chemo last month and just had a breast MRI yesterday. I'll get the results Thursday. I plan to have great news to share then, too. An ultrasound in November showed "almost" no tumor left, so I'm expecting a very clear MRI, and very simple surgery next week, and radiation next month. I'd love some feedback once I get more info.
Cheers to you!!!
Celeste
__________________
"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.
"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)
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01-06-2009, 06:54 PM
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#17
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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You have long been a role model to me, too, Steph! You are truly one of the strongest and bravest of the Warriors fighting this many-headed beast called cancer. Wishing you a wonderful new year and many, many more! Hugs, Tricia
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01-06-2009, 07:24 PM
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#18
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Thank you ALL!
Want you to know that I have MANY role models right here on this site. Look at how long Tricia K. has dealt with this Chimera!
And all you mothers with young children - your bravery and strength to go on is second to none.
Alaska - regarding the vit. D. There has been little sun here and lots of snow and cold - shiver, shiver, shiver. I also read that we get very little benefit from the sun rays that have the mid-winter slant. Not worth the effort to stand the cold to me!
Here is my last thread on my vit D level - perhaps you missed it:
http://her2support.org/vbulletin/sho...hlight=vitamin
My onc believes that getting my vit. D level up could very well be of use in staying NED. Guess her comment was based on study presented at a recent meeting, but I did not ask specifically.
__________________
"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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01-06-2009, 08:21 PM
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#19
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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You Go, Steph! You have been such an inspiration to me the past few years and I am thrilled to hear your good news! Much love always, 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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01-06-2009, 08:27 PM
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#20
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Senior Member
Join Date: Oct 2005
Posts: 823
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Congrats Steph on your NED status. Enjoy your herceptin vacation.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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