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05-16-2008, 01:11 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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Madubois - silence is worrying!
So, come out, come out, whever you are.
I saw you, or someone for you, looked in here yesterday.
Take care of whatever is keeping you quiet!
Big healing hugs coming your way ...
__________________
"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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05-16-2008, 11:37 PM
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#2
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Madame Dubois is missing? Please come out and talk to us, sweetheart.
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05-17-2008, 12:12 AM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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The last we heard she was partying it up at a music festival with her daughter... hope they didn't get kidnapped by a band of gypsy musicians!
__________________
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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05-20-2008, 08:17 PM
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#4
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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I am truly sorry for not keeping up with everyone. I did speak to Christine last week. This is a quick update because I really need to try and get some sleep. I haven't been sleeping well for while. After the trip to California, I became jaundice. Then it got better all on it's own. I had a few tests, but they didn't show anything. Then I got a cold, a really nasty over 2 weeks of suffering kind of cold. My head still hasn't cleared up. I started to turn yellow again, and I've lost nearly 12 lb since California unintentionally. So I am scheduled for a liver biopsy and a port placement in the morning. It's my daughter's 17th birthday, so we are not happy about the timing, but...got to do what you got to do. My dear friend Liz has volunteered to sit with my mom waiting for me to get this done. She is such an angel!!! My mom is beside herself, so this means so much to me!! I know some of you are having harder times than others and please know you are all in my prayers no matter what. I have checked in from time to time, but the losses just made me more depressed.
My daughter bought me the greatest tee shirt for mother's day. She wasn't sure how I'd feel about it, but I LOVE IT, and wear it proudly. It is a plain black tee shirt with white writing. It simply says, " #uck cancer." I gt so many compliments on it and it also helps start conversations...I have actually only worn it once - I haven't gone out much. Steph I know you called and I am so sorry for not returning your call. I haven't really spoken to anyone in a few weeks. I can't believe it's been a month since San Diego!!! I am a little depressed about this happening again, but I'll get this fixed and be ready for the next conference!! I just don't like to be down for too long!! I had a great time and hope to be seeing you again at another event!!!!
Love to you all!! Maryann
__________________
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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05-20-2008, 08:26 PM
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#5
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Maryann,
Nice to hear from you again. I am sorry you are having to go through so much worry with your jaundice. I am sure you will be ready for next conference. God bless you and I will be praying for that depression to go away fast. All my love,
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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05-20-2008, 08:52 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Maryanne,
Take care of yourself--we will keep you in our thoughts and prayers. You know what is best for you--just know we are here.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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05-20-2008, 08:55 PM
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#7
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Hi Maryann! It's so good to hear from you! I'm sorry that you have been having such a rough time. Know that you will be in our thoughts and prayers. You are an amazing woman! Love ya! Bill
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05-20-2008, 09:07 PM
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#8
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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thinking
MaryAnn, you are such a fighter and I know you will continue to be, but I'm sending you my best wishes anyway. And happy day to your wonderful daughter!
__________________
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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05-21-2008, 04:10 AM
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#9
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Maryann,
I was thinking of you this morning and wondering how you were. I'm glad I saw your post here and am sorry you are feeling "YUCK" (for lack of a better term - well I could think of way better terms but didn't want to type them  )
I just want to send my love and care to you. I ask God to help you get through this new leg of your journey and for Him to give you MIGHTY strength and incredible peace.
Consider yourself hugged my friend,
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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05-21-2008, 04:19 AM
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#10
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Maryann,
Glad you checked in with us. You are one tough lady. I like the concept on your t-shirt. I need one of those. I will be keeping you in my thoughts and prayers. God Bless!
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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05-21-2008, 07:10 AM
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#11
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Maryann, I'm thinking positive, good, strong prayerful thoughts for you. You get better fast....you know a car doesn't work too well with one wheel gone!!!!!! Lots of love, 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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05-21-2008, 10:27 AM
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#12
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Guest
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Nice to see you on the Mg Bd
We all missed your presence on our website. I was waiting to hear more good news about your respiratory illness. I missed you at the ONS conference . It woild have been too much for anyway. L found it to be tiring; being away from home. Joe and I did make some very good contacts and I was happy to be well recsived by such a wonderful group of Oncocgy nurses. I found them to be very good listeners too. I told them my story and also your story ;so; Mary Ann you were there!!
Hope your medical team are getting you in tip-top shape.Rest well and heal well. We look forward to your POSTs..........Christine
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05-21-2008, 10:37 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Maryann,
Take care, get the rest you need, come back soon!
__________________
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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05-21-2008, 05:33 PM
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#14
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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I am a little sleepy so if this doesn't make sense....just ignore me. My appointment was for 10 am this morning. After many hours, lots of patience and some yelling I got in at nearly 1:30 pm. The actual procedures went fairly easy and quick. I now have a much needed port - my fourth one (I've also has 2 catheters, one central line and a pic line). My right arm is thrilled because I have to go for blood work tomorrow!! My neck is a little sore, but I took some meds to make it better. The liver biopsy was different this time. They did three punches that weren't really painful at all. So except for all the waiting, it wasn't that bad. I made a huge pot of fresh chicken soup last night, so dinner was great and easy. I am exhausted and the meds have kicked in. time for me put the computer away. Love to all-
__________________
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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05-21-2008, 05:48 PM
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#15
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Senior Member
Join Date: Sep 2005
Posts: 589
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Maryanne,
You've obviosly been greatly missed...by me included. We love you!
Eric
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05-21-2008, 06:59 PM
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#16
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Senior Member
Join Date: Apr 2007
Posts: 292
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Maryann...
Sending a HUGE virtual hug your way...
Please keep us updated. We are all praying for you!!!
Take care,
__________________
Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA
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05-21-2008, 08:31 PM
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#17
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Madame, we love you. Thanks for checking in with us. You sound good. You rest as you need, and we are praying for you. Love, Bill
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05-21-2008, 08:35 PM
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#18
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Guest
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Can't believe, oh wait I can, they made you wait so long. Best wishes and take care, Bev
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05-21-2008, 10:30 PM
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#19
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Dear Maryann -
Thanks for the update today.
Wow, that was some long preop prep time! Glad you let them know you wanted to be next!
That was a tough respiratory bug. There was something like that going around in winter, but the "babies" must still be out there multiplying. I know "healthy" people who were knocked on their tushes for weeks. So, do rest and make sure it is really gone because they can and do come back!
More HEALING hugs to you.
__________________
"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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05-21-2008, 11:14 PM
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#20
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Maryann,
Just wanted to let you know I am thinking of you and
sending you healing energy. Hey, wear that T shirt
even if you are in the house!
Big Hugs,
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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