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Old 01-13-2009, 10:32 AM   #1
nitewind
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I could use a few good thoughts

I've been having a lot of pain in my back (near the shoulder blade) all through my armpit and into my left (good breast). I've been told to hold off on going to the doc to wait and see if it goes away (they say, give it two weeks). Anyway, went to my pc yesterday and he said it's probalbly pleurisy (sp?). Have to get a chest xray and scan tomorrow at 11:00. Also saw my onc yesterday for my three month checkup, I swear if that man ever gave me a bit of encouragement, I think I'd pass out. Asked him after the blood and exam,"well, how am I doing"? Always the same answer, "well, Sue, we can never say for sure" Damn, would it kill him to just give me something to cling to? I'm not real happy right now, I started prednisone yesterday, three pills then three this moring, they are giving me a nasty headache and a weird feeling, so I popped a Xanax, kinda scary, don't wont to accidentely overdose myself on anything.
I running out of thoughts but would just like to ask for prayer. I logged in today and saw my birthday buddy's post (Tricia K) and felt so bad. I'm sure we will all be keeping her in our prayers. God's sure gonna get an earful.
Thanks for listening, love you all.
Susan
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Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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Old 01-13-2009, 10:45 AM   #2
Shobha
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Dear Susan,

Praying for you and sending healing thoughts your way.

love,
shobha
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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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Old 01-13-2009, 10:52 AM   #3
schoolteacher
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Susan,

I am sorry you don't feel well. I will be praying for the pain to stop and for peace to come into your body.
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Old 01-13-2009, 11:24 AM   #4
tricia keegan
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Susan, I'll be thinking of you and hope this is nothing serious. I had similar pain and it was simply congestion, hard to take in when you're expecting lung mets but it is'nt always cancer! No one can blame us for thinking the worst but I hope your's is nothing.
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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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Old 01-13-2009, 11:43 AM   #5
koolmom
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Good Thoughts and Prayers

Just remember, most aches and pains are not cancer related. Of course, our mind tells us it is. So anytime those scary thoughts come in to your mind, just replace it with a positive one....it's probably ok, it's probably not the cancer. Of course, if the pain continues for more than a week, see your doctor (which I think you already have). Try to stay positive!
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Old 01-13-2009, 12:03 PM   #6
Audrey
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Hi Susan,
I'm sorry to hear about your recent pain concerns. I have been complaining about pain in my upper back and shoulder blade area, too, recently and even after 7 1/2 years NED my first thought is STILL "the cancer is back"...I had to smile at your comments about your onc.-my onc. is the same way. Not a drop of encouragement ever (I only got that from the nurses). I remember when she told me years ago that my survival odds were 50-50. I thought would it kill her to say 51-49? Keeping you in my prayers.
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Audrey

diagnosed July 2001, at age 36
large tumor, 11+ nodes
Stage IIIb, er/pr-, Her2+
treated with A/C, weekly Taxol
radiation, + year of Herceptin
on clinical trial. double mastectomy
followed by reconstruction
NED!!
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Old 01-13-2009, 12:18 PM   #7
Sheila
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Susan
Happy Birthday....a day late but with many wishes it was happy, and the pain will ease up and just be a fading memory...
I agree, why do we always have to give the Drs encouragement???
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"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 01-13-2009, 12:50 PM   #8
Believe51
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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
Talking

Susan, this is my 1,500th post and I dedicate it to you for it is all I have and what better a cause than to respond to you and tell you I am right here? Come over here to sit a while and you can watch me pack you up. We will be joining the others at our 'Campfire' site where love flourishes and fear goes to die. Sorry about the less than encouraging doctor, some people just do not have the compassion we need during our journeys. Do not worry though, we are leaving this all behind to huddle our friends like you that need protection and support.

So yes Lovey, prayers are on the way for you especially tomorrow during the tests. We are all here and we all understand like no others. Sometimes it is hard for me to give advice since I do not have BC but many things are similar. I try my best to breathe and to look at what is directly in front of me. If you look real hard Susan, you will find out it is all of us!!! Try to believe in you for one moment. Love Always>>Believe51
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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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Old 01-13-2009, 01:51 PM   #9
StephN
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Wink

Hi Susan -
I have had the "pleasure" of having pleurisy a couple of times in my life. One time after my liver mets were NED. Was SO freaked out that onc ordered a bone scan as my pain was "exquisite." That was his word - I called it "excruciating" like I had a knife stuck between a couple of my ribs. Mine was lower so did not affect my shoulder so much, but hurt to take a deep breath.

Antiinflammitory and rest should fix you up in a few days. My onc said that cancer pain should not hurt THAT much!

Know that we are also sending an earfull to our dieties, adding you and TriciaK especially.

Let us know how you feel in a week or so.
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"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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Old 01-13-2009, 02:07 PM   #10
Mary Jo
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Wish I could do more Susan.....but hopefully my HUGE cyber hug.....listening ear and prayers to our loving God will help a bit.

You are special and loved and anytime our "friends" hurt we hurt right a long with you.

Prayers for peace and continued healing for you and Tricia K.

Love and Peace,

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

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 01-13-2009, 03:08 PM   #11
caya
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Susan,

I am praying that this pain is nothing. Steph N has good advice - antiinflammatories and rest. Some chocolate could help too.

Keep us posted, I'm sending prayers from the Great White North (which is very white, these days).

all the best
caya
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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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Old 01-13-2009, 03:21 PM   #12
Barbara H.
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HI Susan,
I'm have a feeling that you will be fine, but I think it would help you to find an oncologist that has a more positive outlook.
Best wishes,
Barbara H.
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Old 01-13-2009, 04:25 PM   #13
TriciaK
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Dear Susan--This is your birthday buddy, Tricia. I want you to know I am praying for you and hoping all is well with the procedures tomorrow. Be sure to let us know how they turn out.. I have had plueresy several times, too, and know it is really painful. There doesn't seem to be too much to do for it but wait it out. The times I had it, though, it was associated with coughing from pnuemonia, so I would expect that your MD should give you antibiotics in case the pnuemonia is bacterial. I am annoyed with your onc's attitude! Have you talked to him about it? Can you get a second opinion from another MD---it doesn't have to be an ancologist. I doubt it is the cancer, but you need to know for sure. I will be watching for good news! Hugs, Tricia
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Old 01-13-2009, 05:09 PM   #14
Snufi
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nite wind

I will be praying for you, have confidence that you will be well. Have faith that God thruough his son, Jesus will heal you.

Snuf
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Old 01-14-2009, 09:37 AM   #15
flynny
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Hi Susan,

I've been having a similar situation and like you they say wait 2 weeks and see if it is still bothering you. We just can't help but think that it might be the 'C' word, but like many others have said it most likely is caused by something else. I will be waiting anxiously to see what the outcome is. Peace be with you and Happy Belated Birthday.
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-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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Old 01-14-2009, 08:25 PM   #16
Sherryg683
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Susan, I have had chronic pain in my neck..feels like a knife in my neck, pectorial muscles and my armpit sometimes burns like fire when I touch it. I have all sorts of scans, gone to neurologists. All can say that I have some residual nerve damage from my surgery and the awful case of shingles that I had. Some days are worse than others. I have been taking Lyrica and it helps. I know we always tend to think the worst but I've pretty much learned that this pain is just going to be my new normal. I wouldn't get too worried if I were you, take a deep breath and try to relax. I know when I get all tense and nervous the pain is worse....sherryg683
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Sherry

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

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 01-14-2009, 11:36 PM   #17
harrie
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Susan, it not uncommon for any of us to see or feel something unusual and thing "its back"... Like a conditioned reaction.
I hope you will feel better soon and the pain diminishes.
Hang in there.
My prayers to you for patience and good news.
__________________
*** 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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Old 01-16-2009, 07:09 AM   #18
WomanofSteel
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Sorry to hear about you troubles. I will pray that you are quickly on the road to recovery. Hang in there we are all with you.
__________________
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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