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Old 06-03-2008, 10:52 PM   #1
harrie
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Marejo's day is a com'n up!

Everyone keep Marejo in your hearts and prayers that everything goes picture perfect and her recovery is right on. She should be having her DIEP flap reconstruction coming up soon.
Marejo, keep us all posted, ok? And know we are all pulling for you.
Call me or email me if you want to talk, ok? You know I am always there for you.
Hariecanarie
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*** 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 06-04-2008, 04:07 AM   #2
Mary Jo
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Thanks so much "harrie!" Yes, it is coming up. Less than 2 weeks away as of today. June 17th to be exact. I am begining to get more and more excited and less and less nervous.

You know what? Not once did I cry over losing either of my breasts. It's just what had to be for me. I only wanted the "cancer gone" and life moves on. I am not the kind of person to dwell on what "is" but feels moving foward, finding what's positive and making the most of each day and every opportunity is how life should be lived...so that's what I did.

But now, thinking of my "breasts" returning and using my own fat and skin to "make" them is almost unbelievable to me. I feel as if I'm being "put back together" in a sense and it brings tears to my eyes. A few times in the last couple months I've read articles from women who have had DIEP and when they describe their new "breasts" I found myself with tears streaming down my face. That tells me I've had feelings stuffed way down deep over losing mine but something I've never really "went with." As I said before just kind of "stuffed those feelings and moved on."

Well, enough rambling.....again thanks harrie for asking others for prayer for my day. That was sweet of you. I truly would appreciate my "friends" here asking our Lord (on the morning of June 17th) to have His angels surrounding my bed and the surgical team.

Thanks all.........you're the best.

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 06-04-2008, 04:54 AM   #3
sarah
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hello,
prepare mentally for the recovery to be longer than expected - and maybe you'll recover quickly. Hope you can stay in the hospital as long as you need to. I needed 6 days and honestly I found the stomach pain difficult.
take books on tape and music into the hospital because you may not have the strength to watch movies or tv and make sure they put the massaging leg things on you and cooled to avoid thrombosis and also do the breath thing to avoid pneumonia - they probably will. remember when you wake up there will be a morphine drop thing and you press it to start it flowing - it's very limited so you can't overdo it - it wasn't enough for me but maybe I wasn't tough enough.
the breast result will be amazing - like your old breat in texture - you'll love it.
Hope it all goes well and the pain is bearable.
hugs and love
sarah
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Old 06-04-2008, 09:15 AM   #4
schoolteacher
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Mary Jo,

I will be praying for you. Your posts are always full of wisdom.

Amelia
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Old 06-04-2008, 09:28 AM   #5
Faith in Him
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Mary Jo,

You can count on my prayers too. I'll be praying for you and for everyone who will have their hands on you. Also, I pray that the surgery, recovery and the results are better than your expectations. You're in God's hands.

Tonya.
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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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Old 06-04-2008, 09:53 AM   #6
Paty
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Dear Mary Jo,

I would also be very excited about the operation. Think very positive. I know everything will be fine. I for sure will keep you in my prayers that everything will be just fine. Everytime you feel a little bit of pain, just think how wonderful you will feel with your new breast. Love always,

Paty
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Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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Old 06-04-2008, 11:54 AM   #7
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Thumbs up Marejo

I say prayers every day but will include special ones on the 17th for you. I hope to hear you healing well and that it is everything that you hoped for and more!! This decision came with lots of consideration and planning. Mighty oak and I are wishing you well.>> Lots of Love>>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 06-04-2008, 12:17 PM   #8
Mary Jo
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Thank you guys.....your prayers and love mean a lot.

Yes, much "consideration" went into this decision. More than any of you will ever know. I prayed about it fervantly (still do), did my research, asked question after question after question after question and I read and read and read and read. On top of that I've talked to 2 of Dr. Hijjawi's patients and other women on message boards who have had the DIEP. I feel in my heart that it is right. For me!!

Yes, Sarah, it sounds as if it will be "tough" BUT I'm TOUGHER! LOL! Negativity, isn't usually the road I go down and I go with what's given to me. I never seem to have much pain or any issues recovering. I usually breeze through whatever it is. BUT, I have prepared myself "mentally" as you said and am setting myself up for the most OUCHEY recovery HENCE it probably will not be too bad. (that's why I think most things thrown at me aren't too bad - I anticipate the worst and it's never as bad as I anticipate it to be)

"Leslie's sister Lisa" from her2 support has been saying prayers like this for me in my decision making process and approaching the surgery......"Lord please close all doors if the surgery shouldn't take place but leave them all wide open if Mary Jo should go ahead with it." I say AMEN to that.

So far the doors are all wide open and things are falling into place...........so I guess it's all systems go UNLESS of course, the Lord starts slamming the doors.

Again, thank you everyone.....you are kind and good.

I love you guys....I really do!!!!

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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Old 06-04-2008, 01:42 PM   #9
lexigirl
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Hi MareJo!

I am excited for you as your day approaches. Prayers will be said for a smooth surgery and recovery.

Hugs,
Lexi
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Old 06-04-2008, 02:50 PM   #10
NanaKaren
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Marejo,
Prayers will be with you on the 17th for sure. You are tough, and with your great spirit it should be a swift recovery for you. We leave for Petersburg, Alaska on the 19th to see grandbabies and do some fishing, but I will be checking my e-mail often. Please keep us posted. It was so nice talking to you the other day. All my best, Nana Karen
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Dx 7-21-05
1.7 cm invasive ductal carcinoma
Her2 +3 strongly positive
micromet in sentinel node
Sept.05 Lt.lumpectomy/bilat.reduction
Oct.05 4 rounds of AC/12 rounds of Taxol with Herceptin
Radiation 5 weeks
Herceptin only until Jan.07
Started Femara-stopped
Started Aromisin-stopped
Currently on Arimidex with a great deal of pain
Stopped Arimidex
Taking Tamoxifen
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Old 06-04-2008, 04:26 PM   #11
juanita
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My prayers are with you as well! You are such a joy and inspiration to many of us on here. And then there's your words of wisdom, your positive attitude, etc......
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dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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Old 06-04-2008, 05:40 PM   #12
Leslie's sister
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Surgery

Oh sister, I knew this day was coming (Leslie had given me the head's up), now I know the definite day. Lots and lots of prayers for you, especially on the day of surgery.

We are going to NEED to know asap that all went well with the surgery. Maybe your husband could post or send me an email.......

I know that you will come through without problems. Honestly, as I foresee it, the biggest problem is that the doctors and nurses are going to fall in love with you as we have and not release you from the hospital!


Love,

Lisa
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Leslie's Sister (Lisa)
Diagnosed 5/17/06
Left breast Stage II
5 cm. Her2Neu+++, ER-, PR-
1 positive node out of six,
double mastectomy 6/9/06;
TCH started 7/12/06
last chemo 10/25/06
herceptin ended 6-11-07
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Old 06-04-2008, 05:56 PM   #13
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Thumbs up

Hi Marejo - I'm still praying for you and know with your positive outlook you'll be fine!

I like the prayer about closing doors to surgery if that's God's will - the trick is to be able to "see" if the doors are opening or closing, something I wasn't able to do properly before my own surgery, due to my own vanity, fear, ignorance and impatience. You have shown so much patience and courage Marejo - and I just know you'll be the light to my darkness when your surgery is over!
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xxoo
Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%
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Old 06-04-2008, 09:46 PM   #14
Bill
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Marejo, you're always in my thoughts and prayers. I know this will go well for you.
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Old 06-04-2008, 09:59 PM   #15
SoCalGal
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Hey...

You'll do just fine. Stay focused. Everyday post surgery is a healing day. Breathe through whatever is happening. The time will pass. The miracle of our bodies will amaze you as you heal up and start to feel "whole" again. Even in the newly cut and pasted version you will feel like your old self - able to throw on some clothes without that moment of catching your breath as you are reminded of what was. I think the reconstruction is a nice feeling. Nothing can ever replace our original breasts but the amazing reconstruction can come close. I am a crazy patchwork of a girl but still sexy so there you have it!

Those angels are standing by. They seem to hover around the HER2 site - seeking those in need.
xxoo
--Flori
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 06-04-2008, 11:48 PM   #16
harrie
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Marejo, it is going to be tough, BUT the good part is that I think you will be amazed on how much improvement you will see everyday!! Honestly!!
And...the end result will be awesome. To me it is like a miracle. I was never blessed with physically beautiful breasts to be quite honest and my reconstruction is 100 times better from what I originally had and I am not exaggerating! PLUS....you get a nice tummy tuck thrown in for good measure, so hows that for something to look forward to???!!!
__________________
*** 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 06-05-2008, 08:13 AM   #17
Margerie
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Marejo,

I bet you are full of nervous anticipation!!

I threw a big ladies brunch with my friends the weekend before my DIEP. It was a fun way to get my mind off the surgery

And I may have said this before.... when I "woke up" from surgery the first thing I did was peak under my gown at my "frankenboobs"- they had glue, tubes, wires, but man they were beautiful ! I told my surgeon I wanted to hug him and high five him and cartwheel down the hall. Of course I couldn't do any ~

I am so happy you are ready for this next step. My doc warned me it can be a very emotional time- and he was right. I didn't know whether to laugh or cry at myself.


Will be thinking of you these next few weeks and best of luck. Sounds like you are in good hands.
__________________
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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Old 06-05-2008, 08:39 AM   #18
Jackie07
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Marejo,

You will be in my prayers.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
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NICU 4.4 LB
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Start Vitamin D3 and Calcium supplement (600mg x2)
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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

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Old 06-15-2008, 12:59 PM   #19
Louise O'Brien
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Marejo..

I'll be following your story with great interest as I am having Diep reconstruction in early November. I understand your feelings - they mirror mine. I too am excited and overwhelmed at the thought of feeling "whole" again. I gave it a lot of thought, did a lot of research and consulted two surgeons before finally deciding.

I have total confidence in the surgeon who will be doing my operation and that confidence hasn't wavered since I first met him in January. My husband does as well and it was important that he felt the same way as he's the guy who's going to have to look after me for a while.

So I wish you well and I'll be looking forward to your posts.
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Old 06-15-2008, 02:51 PM   #20
notamrnpsn
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MareJo

MareJo, i certainly will be praying for you. could I be so bold as to ask for some Prayers for myself. I have my 2nd mastectomy the day after your surgery. Hugs and Blessings, Jeanette
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