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08-10-2009, 12:29 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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~Mighy Oak Update~August 10,2009
Well, he is still having some problems getting the tests done. Ed agreed to not get admitted and try these on his own because he was not assured that tests would take a day or two. We went for a brain MRI on Thursday and the person doing the procedure came out with him and said he cannot do the test. He was gasping for air and could not breathe, I can not say for sure this was an anxiety attack. This has happened at home several times but the added pressure of what is happening in the brain brings new worries. He was clammy and needed to sit for a while before leaving.
He has had boughts of confusion that are not always apparent to him. Of course he is not allowed to go anywhere without me. I am so worried about someone taking advantage. I must admit between the confusion and him being almost completely deaf, he just keeps getting cuter and cuter. His blood pressure is great, appetite so-so and he gained two pounds. The tumor markers have been cut more than half. I am so curious to find out if the Ixempra passed the BBB.
Our plans are to get these tests done and restart a new chemo. We have an appointment on Thursday with OncoMan to trudge forward. All in all, his attitude is that of calm. He started getting some headaches, mild ones but we cannot say why. Ed has some things to get in order and I know that this is bothering him. The more I watch this man the more I love him. He has not passed out since that day and balance is a tad better. The neuropathy is extreme and he walks in a very sad manner, he has a cane but does not need it for the house. I cannot express how skinny he is, it saddens me deeply.
My heart literally hurts as I try to stay strong and focused. I have been having issues with holding back tears and catching myself before I am totally in a funk. Our Granddaughter has been over and although Ed slept most of the day, he was content having a visit. She told me how I always cheer her up and that the more she knows me, the more she loves me. What is better than that? I was just about to fret about being jobless in RI's 12.4% unemployment rate and....
Rexin Rose called. She told me that she is about to go public. Rose told me she had formed her Board of Directors and was moving forward as planned. She also told me to take care of what I needed to take care of and love my husband. Today's call was to assure me of a secured job when I am ready. I can collect until first week of October before applying for extended benefits. I technically still have to look for work and let' face it, I took a huge hit in the pocket now that I am collecting, especially because I am taking taxes out. By the end of the year we are looking to hire a total of 200 people. Things are falling into place.
I know I have been distant lately. I feel like I am going insane at times. My migraines are back thanks to summer and my body is bad. The neck and back are in and out of service.
But he is still here and so am I. I do not want to miss a thing, a split second of loving him. I am still packing hope and Ed still has his battle armor on. We have just begun to fight, set back but not giving up. And I just wanted you all to know how better I feel talking to you this early am....hugs to all.>>Believe51
__________________
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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08-10-2009, 03:37 AM
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#2
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Re: ~Mighy Oak Update~August 10,2009
Hard & brave times Marie - for you & Ed. Much love to you both.
Blessings
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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08-10-2009, 05:38 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: ~Mighy Oak Update~August 10,2009
Marie, my heart goes out to you and Ed. You are so brave and so loving. Ed is so lucky to have you by his side. I wish things were easier for you - like this horrible disease would just go away!!! - and I pray that you'll get some good news when you see the onc on Thursday.
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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08-10-2009, 05:45 AM
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#4
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: ~Mighy Oak Update~August 10,2009
Hi Marie,
I was so happy to read your update this morning. My heart is always with you and Ed and I'm always wondering....what's going on.
Prayers continue..... as does love.
Gentle hugs,
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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08-10-2009, 06:30 AM
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#5
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Re: ~Mighy Oak Update~August 10,2009
Hi Marie,
Thank you for taking the time to update us. You have many praying for you to have strength and comfort. I wish that we could make it all better.
Love, Hope, Peace, Carolyn
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08-10-2009, 07:01 AM
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#6
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: ~Mighy Oak Update~August 10,2009
Marie,
It is good to hear news from you and Ed. He is still in the fight. I pray that the treatment has helped.
I'm so happy that you have a job waiting. Money woes on top of everything else is so stressful.
Thinking of you today.
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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08-10-2009, 07:04 AM
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#7
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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Re: ~Mighy Oak Update~August 10,2009
love, hugs and prayers for both of you!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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08-10-2009, 07:23 AM
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#8
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: ~Mighy Oak Update~August 10,2009
Marie, you and Ed are working so hard and fighting so bravely! But it surely must take your energy and hope and drag them around a bit. I think sometimes a good ol' cry is the bestest medicine of all. I watch movies and cry and cry sometimes...life is difficult and changing and stressful BUT also filled with adventure, love, challenges, excitement and the most glorious friends. You've got it all right now my girl and it's stretching you from hither and fro. Please accept our gifts of love, prayer, friendship and energy for you right now. You're one terrific rascal, Miss Marie! Love never fails....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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08-10-2009, 08:17 AM
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#9
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Guest
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Re: ~Mighy Oak Update~August 10,2009
Marie, thanks for the update. You and Ed have been on our minds. I feel like we are in a similar fight. Joy has lost so much weight, in so much pain, has no quality of life, yet we keep on fighting and getting through one day at a time. Sending hugs and much love your way. Take care of yourself! Love Jennifer and Joy
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08-10-2009, 10:01 AM
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#10
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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Re: ~Mighy Oak Update~August 10,2009
"All we need is love!" You and Ed are inspirations to me. You love so deep, fight so hard, and care so generously. You're doing great. You should be proud. Don't forget to do SOMETHING for yourself. Take at least an hour of your day to recharge yourself. I love you guys.
__________________
"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.
"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)
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08-10-2009, 10:31 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: ~Mighy Oak Update~August 10,2009
Sweet Marie,
Sending positive thoughts, prayers and big hugs to you and Ed.
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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08-10-2009, 11:24 AM
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#12
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Re: ~Mighy Oak Update~August 10,2009
Marie and Ed, holding you both in my prayers and sending lots of love your way.
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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08-10-2009, 11:49 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: ~Mighy Oak Update~August 10,2009
Hi Marie, and Ed...thank you for taking the time to update us this morning. I know what a struggle it must be to have to put things into words. You are an amazing woman, Marie, as is Ed an amazing man, to be going through this with such a positive attitude. Your Karma- meter is off the charts. Even though we have never really "met", I think of you two often during my day with love and hope. 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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08-10-2009, 12:15 PM
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#14
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: ~Mighy Oak Update~August 10,2009
Marie and the Mighty Oak,
Glad to see your post. You both are in my prayers.
Amelia
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08-10-2009, 01:01 PM
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#15
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: ~Mighy Oak Update~August 10,2009
Marie,
You seem so weary - and of course with good reason. Yet you stand and keep going. You are so amazing, I am filled with gratitude that I am lucky enough to know you and love you and bear witness to your great love for Ed.
It is encouraging that Ed's tumor markers are continuing to decrease. That seems to be one of several tiny hopeful signs in your report. That you are "curious" about what's going on in the brain is a fair understatement I am sure. The next time Ed tries an MRI could you ask to be in the room with him? Just feeling your hand on his could be very calming.
Marie, you know that you and Ed are in my constant prayers, and you are one of my first waking thoughts every day. Take care of yourself, as well as Ed.
Much love
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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08-10-2009, 01:48 PM
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#16
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Senior Member
Join Date: Sep 2005
Posts: 208
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Re: ~Mighy Oak Update~August 10,2009
Dear Marie, am deeply wishing for some sort of relief and comfort for you. Of course you must be exhausted from worry and stress. You are one of the strongest women I have ever known but even superwoman need physical and mental rest.
May tomorrow bring some encouragement to you and Ed.
Hugs, and prayers for you and Ed,
Diane
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08-10-2009, 03:21 PM
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#17
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: ~Mighy Oak Update~August 10,2009
Hello Marie,
I'm so glad you were able to send an update....both you and Ed have been in my thoughts and in my prayers. Here's hoping that the Ixempra did pass the blood brain barrier and that tumor marker numbers continue to improve.
Good that there is a job available for when you are ready too....Sending much love to both of you.
Barb A.
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08-10-2009, 03:49 PM
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#18
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Re: ~Mighy Oak Update~August 10,2009
Hi sweetheart! You and Ed are always in my thoughts and prayers. Like others have said, please try to take a little time out for yourself when you can. You need it to regroup. Love, Bill
__________________
For Nicola
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08-10-2009, 04:30 PM
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#19
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: ~Mighy Oak Update~August 10,2009
Marie, I don't have any advice but wanted to send huge hugs to you and please know you're both in my thoughts  xx
It'll work out
__________________
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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08-10-2009, 06:32 PM
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#20
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: ~Mighy Oak Update~August 10,2009
Marie,
So glad to hear from you. Please know you and Ed are in my prayers and we are always here for you.
__________________
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.......
14 YEARS NED!
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