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02-06-2009, 11:00 AM
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#1
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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Hi guys
I'm here and thank you for thinking about me. I have been in a physical and mental funk for awhile. I definitely feel fatigued from E/C and I don't like it at all. Last week I developed a really high fever and 2 odd pains, get this-one in my right inner thigh and the other in my left forearm. Certain movements were very painful and my mobility was hampered. It makes no sense. I started on Invanz (IV antibiotic) because of the fever and blood cultures were taken-all of which came back normal. So I don't know if I did 7 days of antibiotics for nothing or what. My normal temp is usually 97 ish so for it to reach 104 for 2 days seemed alarming. It is driving me crazy as to what all of it would be.
My last chem panel showed some good things and that was after 2 treatments. ALT/AST were about normal, alkphos was finally coming down into 300 range from 400plus. My CA27.29 also came down from 400plus to 300 range. I just hate to get to excited because that happened on the DM1 trial too and then things got worse in the liver.
So I have been in bed a lot, slow moving, slow thinking, feeling like a lousy mother/friend, whatever. And worrying a lot about how the E/C is working and what if my liver just can't take any more drugs and if my days are really numbered. I just feel very little hope and I don't exactly know why. I feel like I always look stupid and pale and old and, of course the no hair thing is making me feel more so.
I am just a big whiny pants I know and I am sorry. I am just in worry mode-which I know helps nothing. I also know that I love all of you so much and I know that you have felt these things before and that our struggles are unique and some are much harder than mine-which is why I hate to post when I feel like this. I think about all of you everyday and keep pratying for some miracles-even little breakthrough miracles would be great.
__________________
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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02-06-2009, 11:20 AM
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#2
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Joy, please don't call yourself whiny, my friend. You make me cry.
You are battling so much and there is nothing wrong with taking things slowly. Things will look up very soon. Our collective prayers will have to work. God has to bless you with the right weapons to win this battle.
Sending lots of postive vibes your way.
Lots of love,
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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02-06-2009, 11:27 AM
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#3
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Joy,
I am glad to hear from you any way you feel. When I joined this board last year, I recognized you to be a warrior. Hope you get to feeling better.
Amelia
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02-06-2009, 11:30 AM
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#4
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Dear Joy,
You have every right to whine. You are going through a difficult time right now. I am lifting you up in prayer as I type this to you. Just hang on. There will be others to encourage you soon. Even though you understandably do not want to get too exicted about your blood work, It is good, so hold on to that for now.
I too understand being upset with our physical apperance as well. I often look in the mirror and do not see the 37 year old women I used to be before bc. But then I have to remind myself, that even though I have thin, graying hair, one breast and and one arm larger than the other, I am still here for the kids. And fortunately, they take me as I am.
I pray that you will able to see a little bit of sunshine in your day today. I know it is not always easy but we are here for you.
Tonya
__________________
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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02-06-2009, 12:16 PM
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#5
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Senior Member
Join Date: Apr 2008
Location: me & my three HANDSOME grandsons!!Jacksonville, Arkansas
Posts: 354
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Joy,
You said you don't like to post when you are like this; that's exactly when you SHOULD post. You need to be picked up spiritually, and this is the place for that.
Please take comfort in this: There are many, many people here praying for you. Many people only read and never post. They are praying for you too!
{{{{{{{{{{{Joy}}}}}}}}}}}}
__________________
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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02-06-2009, 12:24 PM
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#6
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Joy,
So good to come here and see your post. I have been praying for you daily and thinking of you always. We face the same trials and I know how you are feeling right now. I, too, have done the "numbered days" thing these days (mainly because they probably are), though I realize that all of our days are numbered...it's just how many? As far as you whining, please don't even think that. You are merely processing something that is so profound, so mysterious, none of us have the answers, and crying can be so cathartic and good for us.
I am watching the rain fall outside, as if all of our tears have been combined at once, and are dropping to ground in hopes of new birth and spirit and hope.
From all of us here with no hair, no breast, no energy, and fear of the unknown...I send you my deepest love and hope today, Joy. You have always been there for me when I was without direction. You have inspired so many and given us the gift of your friendship. Thank you.
I will continue to pray for your health and comfort as God wraps his loving quilt around your shoulders. You, a whiner? I don't think so, just a beautiful woman who is need of our support, which we offer freely.
Thank you for checking in. I love you, sweet sister, 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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02-06-2009, 01:44 PM
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#7
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Member
Join Date: Dec 2007
Location: Columbia,SC
Posts: 16
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Beautiful Joy-
Know you are loved here. That is the beautiful thing about this site. You can cry, whine, spit nails or any other thing that will help get you through this rotten time. I too, am praying for peace and uplifting for you. Your picture with that brilliant smile is what we see. Cling fast to that and to those of us here. We love you and are here for you. Sending you hugs beyound belief!
And Keep posting...we like to hear from you.
__________________
Madge
Diagnosed Jan 07
Stage IIa
2 cm IDC Her2+++, ER+
Venous/Lymp Invasion present
Neoadjuvant Chemo Herceptin/Taxol X4 complete response-no evidence of tumor
6/07 tumor "bed" removed
SN biopsy neg (performed after Herceptin)
FEC x 2
Rad X 28
Herceptin every 3 weeks until April 08
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02-06-2009, 03:28 PM
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#8
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Hi Joy,
I guess that it is times like these that your name adds pressure to keep up the happy face. We are here for you for the good, the bad and the ugly (although you could never be ugly). Please vent away and share your feelings and fears. I have been told it helps to get it out even though for some it is hard to admit or share the darker feelings.
I hope that this chemo kicks the cancer to the curb and you get to feel more like your old self again soon.
Love, Hope, Peace, Carolyn
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02-06-2009, 05:11 PM
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#9
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Well put, Carolyn...AMEN! Love, 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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02-06-2009, 06:22 PM
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#10
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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I understand your frustration and hurt....I hope and wish for positive results for you. It must be so hard...I hope that something works out positive for you very soon...I thought Carolyn did a great job too!
__________________
Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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02-06-2009, 08:41 PM
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#11
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Aww Joy...I love you and think you are one special lady. You have been through so much and "whining" as you call it is NOT whining at all...just you telling us how you feel.
I ask our Lord to give you His strength and peace to get through what you need to get through.
Love you sis........
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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02-06-2009, 08:42 PM
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#12
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Senior Member
Join Date: Oct 2005
Posts: 823
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Joy I can't add any more to what's already been said.
Just know I'm sending lot's of prayers and hugs out to you.
__________________
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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02-06-2009, 08:59 PM
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#13
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Hi Joy,
Hang in there. Prayers and hugs are on the way.
__________________
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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02-06-2009, 09:12 PM
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#14
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Joy,
You could never be a whiney pants! We love to hear from you in any way.
Keeping you in my thoughts and prayers.
__________________
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.......
14YEARS NED!
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02-06-2009, 09:30 PM
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#15
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Senior Member
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
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Please know that you are in my thoughts and prayers. I am so sorry you are not feeling well. I think this will pass and you will feel better soon.
Hugs,
Karen
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02-06-2009, 10:33 PM
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#16
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Dear Joy,
There is very little to add (our other sisters said it well)
but remember you are extremely brave and strong, a
tough fighter....it is perfectly normal to feel a bit worn
down. But knowing you - you will pick yourself up and
kick it back like you have always done.
Everyone here loves you and prays for you as I know you are feeling those loving vibes.
Also, you couldn't be a bad anything - even if you tried,
so except your pretty little no hair head and know that you're beauty is within and it is so strong and powerful
that it flows out of you....hey you're Mother didn't name you JOY for nothing....
Keep us posted and know you are loved.
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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02-07-2009, 04:23 PM
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#17
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Joy,
Battling a 104 fever is no small thing. You must have felt very crummy physically - and that always impacts my spirit as well.
I have loads of hope for you.
One foot in front of the other, dear Joy, and don't forget to breathe.
__________________
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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02-07-2009, 04:36 PM
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#18
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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I'd much, much rather hear you whine than not hear from you at all.
You have my permission to whine, whether you are entitled to any whining or not. ;-)))
It's what we do from time to time. Shall I whine a bit about my infected tooth? There's nothing worse wrong with me, but it makes me want to run to Mummy and complain about the swollen jaw. Mummy's no longer here, so I whine to my kittens. They just purr and that's all I need, really.
But if I wanted to whine about cancer, I'd come here. It's a great place.
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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02-07-2009, 06:33 PM
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#19
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Sending you hugs Joy. Please don't stay away for long afraid that you are being whiney. You are a beautiful girl inside and out. We like to be here to read the good and the bad with you. You aren't alone in this fight.
Hugs,
Lexi
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02-08-2009, 05:33 AM
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#20
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Hey Joy,
Nice to hear from you, you are not a whiner, you are a great gal who has not been feeling well lately. You are a real trouper Joy - You have been through alot and I can only commend your fighting spirit.
Sending big hugs from Canada.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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