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09-25-2009, 07:16 AM
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#1
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
I just had a 30 minute conversation and understood nothing. This man I have had 18 years of beautiful conversations and I can't even communicate with. He just turned over a bottle of blue Gatorade over, of course not his fault. In the middle of this mess that gave me chest pains....religious services from Hospice calls....
Not sure I have enough on my plate, this is testing my faith. I might even have to change my name!!!!!!!!!!!!!!!!!!!
Struggling with God and wondering where the hell he is 'cause he has certainly left us long ago. I am sure I will go to hell because I think my religion is a bunch of garbage!!
This disease SUCKS!!!!
__________________
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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09-25-2009, 07:43 AM
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#2
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
Oh Marie,
I'm quite certain you won't go to hell and whatever God you believe in is still there with you helping you cope with all this 
I don't think you could have done it so well for so long otherwise without some divine intervention!!!
I don't know what else to say that I haven't already, but wanted you to know we hear and understand .....can you take a break for an hour and go do something relaxing that you'd enjoy??? Sounds like you need it
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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09-25-2009, 07:46 AM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 823
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
Marie sending BIG HUG'S to you. Prayers still continue.
__________________
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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09-25-2009, 07:57 AM
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#4
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Senior Member
Join Date: Dec 2005
Location: virginia
Posts: 99
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Take Care of you
Marie,
You have been so strong for so very long. You must allow yourself relief....emotionally, physically, spiritually....give yourself a break from being strong. Call it your personal time to whine, cuss, complain to Him....heck, throw something !! Take a break and be stronger for it tomorrow. We will be there with you and understand and love you all the more thru it all.
Hugs and love and prayers, Bonnie
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09-25-2009, 08:00 AM
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#5
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Senior Member
Join Date: Sep 2006
Location: Chicago, IL
Posts: 105
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
Thinking about you and sending you a giant hug. I am so so sorry. Please know we are all here to support you in any way you need!
Lisa
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09-25-2009, 08:23 AM
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#6
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Senior Member
Join Date: Aug 2009
Location: Moultrie, GA
Posts: 431
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
Marie,
I undsrstand the frustration you are feeling right now. Eight years ago I lost my dear husband of 35 years to glioblastoma. After the brain surgery, he had extensive swelling because of the Gliodele wafers they put in. He lost his total ability to communicate. When he could not talk, he tried to write notes that no one could read. This was a man who was a pharmacist and could normally spell anything in the world. He got so frustrated at me when I could not understand that he threw a blueberry muffin across the room at me while we were still at Duke! I am sure that you know that this is as hard on him as it is on you.
He always (35 years worth) told me that life is for the living and he expected me to continue with my life. I learned after his death that this was the greatest gift he ever gave me. Please remember that as you go through this "hell." Your life will never be the same, but eventually you will be able to greet sunups with a smile. The old cliche', "Time heals," really is true. There will never be a day that you will not think of your Mighty Oak with love, but you will be able to enjoy living again.
You are in my prayers. I pray for strenght for you and peace for your husband.
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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09-25-2009, 08:30 AM
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#7
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Senior Member
Join Date: Sep 2005
Posts: 290
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
Dearest Marie,
I have had many periods when I was sure there was no God, because I didn't think he could be so cruel. Then I remembered all of the times in the past where I thought the same thing, only to realize and then completely understand what He was up to when I doubted Him. You will only find peace when you release your will to Him. Let Him handle this, as only He knows how. I know this is a brutally horrible time for you, but you must have faith. Just because things don't go the way WE planned them, doesn't mean that they aren't being handled. When this is over, your faith and your God will be the only things that enable you to go on living. Trust me, I know.
As far as having a conversation with Ed, just look him in the eyes and know that he knows exactly what you are saying, and will "speak" to you in other ways. He needs you now more than ever. Take a break, then sit with him and be his comfort. God will be on one side and you on the other. You are both almost to the finish line with all of this. I envy Ed for having someone like you, and for getting to go home before I do. We'll all get there, in His time not ours. I send you both much love.
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09-25-2009, 09:02 AM
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#8
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
Marie,
My hearts breaks for you. Go ahead and get mad at God. I would be mad too. Get it out and then start to lean on Him again. He'll get you through this.
My love and prayers to you both.
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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09-25-2009, 09:02 AM
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#9
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
Thank you Tom ~ I love your words and I hope they provide some comfort to Marie. I can only imagine the unpleasant and dreadful place she is in at this time and my heart completely breaks for her and Ed.
Please know that your words really speak to me and are exactly what I needed to hear/read today.
All the love and peace and comfort to you today, sweet Marie. Whatever you need...
__________________
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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09-25-2009, 09:11 AM
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#10
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Guest
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
((((((((((((((((Marie)))))))))))))))))
What Tom said is perfect. He hears you needs you right now more than ever, he is in there listening to you and praying for you not him. He sees what you are dealing with. God is there, like Tom said he is on the other side. May his time come and be peaceful.
Your my hero!!!!!!!
Randi
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09-25-2009, 09:25 AM
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#11
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
Sweet Marie,
I too have been mad at G-d - don't worry, He can take it. And time does heal all wounds, albeit never entirely in some cases.
I lost my beloved father 18 years ago - he was only 59 (heart attack), leaving my 52 year old mother a widow. I am 51 now, she was only a year older than I am now. I was heartbroken, mad and bitter for a long time. This disease sure sucks.
Try and get some time alone, for a break.
all the best
wishing you peace,
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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09-25-2009, 09:27 AM
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#12
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
Sending love and hope for tons of angels to surround you, Marie. It's awful at times and nothing will bring peace, but then from where ever peace and goodness comes, once again the strength appears. You don't have to be perfect Marie, just you and all the things that make Ed and all of us love you. Once again I highly recommend a scream or two. Luvin' ya muchly, 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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09-25-2009, 09:27 AM
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#13
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
((((((Marie))))))
Barb A.
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09-25-2009, 10:22 AM
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#14
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Senior Member
Join Date: May 2008
Posts: 118
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
Oh Marie, I know we all feel lost at times and think God has left us, but I always remember the hymn Abide With Me and know he has not left. My thoughts and prayers are with you, Jeanette
Last edited by notamrnpsn; 09-25-2009 at 10:24 AM..
Reason: spelling
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09-25-2009, 10:26 AM
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#15
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Senior Member
Join Date: Jun 2007
Location: Bergenfield, NJ
Posts: 121
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
My Dear Marie,
I never tire of re-reading this particular message. It always makes me smile.
"God is crazy about you. He sends you a sunrise everyday, flowers all year round. He has the universe, but prefers to live in your heart…
Love,
Gemma
__________________
My love to you all
Gemma
____________________________________
Dx July03 at 35
Rt,breast lump.,1 node+
ER+(98%)ER-, grade3
A/C 4rounds,Rad for 38 days
Tamoxifen 2004-05
Recurrence Feb.2006, radi double mastectomy canceled bec. of mets, StageIV lungs mets
Her2+++, BRCA negative
Taxol/Herceptin six rounds of Taxol from April06.then Herceptin alone til May07. Started Tykerb/Xeloda in Jun07-Sept.07 bec of progression of the lympnodes. Navalbine/Herceptin Sept.07 to April 08 due to progression . Gemzar/Hercptin Apr08.June08 Brain MRI showed Brain Mets.CraniectomyAug.1,08, tumor removed completely
completed 20 wbrt!
Started Doxil 10/31/08 (monthly) and weekly Herceptin
Ixempra on 2/13/09
due to multiple hepatic mets
will have Herceptin as well.
Radical rt.breast Mastectomy June2009.
Ixempra/Herceptin 11/06/09--increasing right axillary lymphanenopathy and enlarging left upper lobe nodule :-(
Taxotere/Herceptin 3/5/10,more liver mets, lungs, lymphnodes. 2 weeks on, one week off...
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09-25-2009, 11:22 AM
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#16
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
Marie,
I hope Tom's sage words are comforting to you. It's excrutiatingly hard to witness the slipping away of one so loved. My faith that the suffering was almost over helped slightly. The fact I was there helped me later.
You are THERE with Ed , which is so comforting to him, I pray that you are comforted in the future knowing this.
Blessings to you and Ed.
__________________
Linda
Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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09-25-2009, 11:25 AM
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#17
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
May I recommend a book that you may want to read, if not now later. "When God doesn't make Sense"..by James Dobson. My pastor gave it to me and my brother when we were both fighting our cancer. It really helped me a lot and I still go back and read it. You are in my prayers...sherry
__________________
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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09-25-2009, 11:45 AM
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#18
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
Hugs to you Marie...for hanging in there. Look into Ed's eyes and tell him how much you love him, and hate the struggle that you are both going through right now. Ed is your soul mate, something dear and precious...deal with God later! XO Suzan
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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09-25-2009, 11:53 AM
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#19
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Senior Member
Join Date: Jun 2007
Posts: 216
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
Marie,
Just big hugs to you and you certainly will not go to hell. You have been wonderful with Ed as he has been with you.
Love and prayers for you two lovely people.
Just do not know what to say, but everyone here is for you.
Janie
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09-25-2009, 01:17 PM
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#20
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Senior Member
Join Date: Jun 2009
Location: Mississippi
Posts: 253
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Re: ~Okay, 30 Minute Conversation and I Don't Understand A Word!!!!!
((((((((((((((((Marie)))))))))))))))))
Everybody has already said things a lot more eloquently than I can. God's still there. Love you sis!
__________________
4/09 suspicious lump in left breast
5/09 biopsi lead to diagnosis ER/PR -
Her2+.Grade 3,full masectomy left breast,sentinel nodes clear,Stage 1
6/09 Adriamycin + Cytoxan 4 treatments (every 3 weeks) followed by Taxol + Herceptin, 1 treatment weekly for 12 weeks, followed by Herceptin for 40 weeks
MRI Brain 4/10 clear
CT Body 4/10 clear
PET Body 2/11 clear
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