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11-22-2009, 09:15 AM
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#21
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Chelee, Thinking About You
Chelee,
Posting at 1:37 AM????? Glad to hear you've got the surgery behind you...and hoping for speedy resolution of the post surgery issues.
Take care,
chris
__________________
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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11-22-2009, 02:10 PM
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#22
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Chelee, Thinking About You
Hi Chelee! Glad you got through surgery in one piece, but what are those nurses doing not following doctors' orders? Have you mentioned this to your doc and asked him to intervene? I've heard about not giving food to someone who is very nauseous after surgery. Were you still on an IV? They may have done that to make sure your stomach settled down. I had a similar reaction and everything I swallowed came back for 24 hrs. And that was after a short surgery with minimal anaesthesia.
Don't you have someone (husband, friend, relative) who can step in for you and deal with the poor nursing? I know I had to do that for my Dad when he was admitted after a fall recently. They are so busy they forget what they are doing. Or should be doing for that matter.
Isn't it ridiculous that you have to keep tabs on your treatment plan while in a hospital? Isn't that what the nursing staff should be doing?
Anyway, hope you get out of there soon, and may you heal swiftly so you can get your chemo.
Love
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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11-22-2009, 04:11 PM
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#23
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Chelee, Thinking About You
I am thinking about you too. I hope you are feeling better by now. Please take good care of yourself and let others around you do some of the physical labor !!
Get strong, so you can get your chemo soon.
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11-22-2009, 05:01 PM
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#24
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Chelee, Thinking About You
Chelee,
Take deep breaths ... And I'm hoping you'll be back on the board soon.
Sending you a lot of hugs and prayers.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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11-22-2009, 05:24 PM
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#25
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Senior Member
Join Date: Jun 2009
Posts: 343
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Re: Chelee, Thinking About You
Chelee,
So good to see your post. You've been on my mind and hopefully the worst of this will be over. I know you want to get home--that can make you feel so much better.
And like everyone says, try to get someone else to help make sure you are taken care of.
Sending you a warm hug.
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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11-22-2009, 06:22 PM
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#26
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: Chelee, Thinking About You
Hi Chelee.....Good to "see" you and hoping you are back among us soon.
Hugs and love...
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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11-22-2009, 06:55 PM
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#27
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Re: Chelee, Thinking About You
Dear Chelee,
I am praying hard for you and wishing you speedy recovery. God bless you!
hugs,
shobha
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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11-22-2009, 07:16 PM
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#28
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Senior Member
Join Date: Aug 2009
Location: Moultrie, GA
Posts: 431
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Re: Chelee, Thinking About You
Chelee,
I hope you are beginning to feel better. The worst is behind you! Take it REAL easy and try and not over-do. Rest is the best healer for your body.
Take care and I will pray for a speedy recovery.
Sandra
__________________
Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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11-23-2009, 12:01 AM
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#29
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Re: Chelee, Thinking About You
Chelee, I hope you get the care in the hospital like you are suppose to get and are entitled to get. We all want you well and about as soon as possible. Wishing you a good recovery.
Much aloha.....
Maryanne
__________________
*** 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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11-23-2009, 04:52 AM
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#30
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Chelee, Thinking About You
Chelee,
Can you ask for a referral to a Rehabilitation doctor to assess your condition and possibly get some physical /occupational therapy?
Thinking about you.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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11-23-2009, 06:45 AM
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#31
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Chelee, Thinking About You
Chelee,
Glad your surgery is over. Hope you get to feeling better.
Amelia
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11-23-2009, 08:09 AM
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#32
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: Chelee, Thinking About You
Chelee,
You know I am thinking about you. Hope you are finally starting to feel better and you will be walking - pain free - again soon.
Take care,
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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11-23-2009, 09:36 AM
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#33
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Re: Chelee, Thinking About You
Hoping you are feeling better and wishing you a quick recovery!
__________________
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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11-23-2009, 11:32 PM
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#34
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Chelee, Thinking About You
I finally got home from the hospital on Monday. (11-23) What was to be at most 3 days, turned into 5 days. As I already mentioned I was told I lost alot of blood. I'll tell you...as much as I wanted to do Tykerb right now I can't even imagine that now. I have a high tolerance to pain and this has been just excruciating. I can hardly put any weight at all on my right hip...pure torture. They sent me home with injections of blood thinners for 7 days. Usually they do that while you "in" the hospital...not sure why I get mine when I leave?
When it comes to them not feeding me...not sure what the deal was there? I thought I was on an all liquid diet since I was nauseated after surgery? But later I found out that I was on a "normal" diet and they didn't know why I wasn't given any food? So it was a little over two days before I got to eat...I was starving! (Maybe they thought I could afford to lose a little.) lol After I called my Ortho's office and told his nurse I hadn't had any food in two days...nor was I getting any physical therapy did I finally get to eat. The physical therapy was a joke...I got it twice the entire time I was there. My mother had two hip surgeries and they had her up right away and moving at least 3 times a day...along with excersise to do in bed. I was given no instructions on what I should and shouldn't doing? I was very pro-active about all this and so was my husband...not sure what the deal was.
Anyway...I'm home...and I can't tell you all how happy I was to find all the replies.  This has been a lonely road for me with the exception of you guys. I can't tell you all how much it meant for me to find all your well wishes, support, & prayers. Thank to all of you for thinking of me and keeping me in your prayers...I sure need them.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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11-24-2009, 12:00 AM
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#35
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Chelee, Thinking About You
GLad you are home! Just can not fathom your NURSES not even noticing you were not getting any food. Hope they were at least keeping your water jug full or giving you juices. Boggles my mind!
__________________
"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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11-24-2009, 02:12 AM
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#36
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Chelee, Thinking About You
So good to hear you got home! Now take care of yourself and get some help. This is major surgery and you need help around the house, you need PT, you need to get your strength back for the next round, which is going after those cancer cells whith everything we've got!
Hugs
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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11-24-2009, 03:29 AM
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#37
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Senior Member
Join Date: Nov 2005
Location: Hilton Head Island, SC
Posts: 279
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Re: Chelee, Thinking About You
Oh Chelee, I hate that you are going through this. Thank goodness you are home. Hospitals can be dangerous but didn't think you could starve while there! I just happened to cruise by this morning. Glad I did so I can wish you well. Love, Kim
__________________
Kim
Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes
BRCA 2 positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara
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11-24-2009, 04:44 AM
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#38
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: Chelee, Thinking About You
Hi Chelee Girl! Well, you've done that! You are amazing, you know! I'm so sorry that your hospital adventure was such an ordeal! It's scary the things you've had to deal with. I'm glad you're home and in a safe place again. Best wishes for that ol' hip to start to mend correctly and with a lot less pain. Lots of love and prayers to you, 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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11-24-2009, 08:13 AM
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#39
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Senior Member
Join Date: Aug 2006
Posts: 492
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Re: Chelee, Thinking About You
Chelee, so glad you are done and home~!!
I have had bad hospital experiences. (ugghhh) It is hard enough to recover physically and emotionally, you don't need to fight the hospital too.
Hope you can focus on your healing and gear yourself up to kick some butt!!
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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11-24-2009, 09:30 AM
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#40
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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Re: Chelee, Thinking About You
Dear Chelee,
I'm so sorry you're still having such struggles with your doctors and nurses. I hope your husband is advocating strongly for you so you can focus on healing. If not, we need to find you someone who will. You shouldn't have to fight so hard when you are so weak. He should have been banging on the cafeteria door or smuggling in some take out or something, not to mention banging on the physical therapist's door!
Try to stay as confident as possible and keep on truckin'. You can do this. Find what strength you have and focus on that. It may be one part of your body, it may be your spirituality or maybe it's HER2 support! Focusing on your sources of strength, and it may help you remain calm and confident.
Love, 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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