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07-17-2008, 01:57 PM
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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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~Mighty Oak STABLE and Cruising Eastern Carribbean For More Normalcy!!!
Still do not know if stable is the same as NED but we are dancing anyway. Just so pleased to see him still here fighting. September 7th marks his 2 year Cancerversary and for that, for the fight, for the completion of 1 1/2 years straight chemotherapy.......I am taking him away!!
I was so sad last night when we had complications getting these plans in order that I cried myself to sleep. Complete meltdown. It did not look like we would be travelling anywhere! What a great thing to cry about, something OTHER THAN CANCER!! Although I did not think I would feel better about it in the morning, I did. I rejoiced in the fact that the biggest problem we had for right now was vacation plans!! Today I had to get a new birth certificate (don't ask), passport and pay for the entire cruise by 3.30. FINI!! All set Mighty Oak, this one is for you!!
We will be driving to Miami and getting there early, so if anyone wants a visit, we could plan something. Thirteen days of Heaven. AHhhhhh!! I cannot express the complete joy.
When the doctor pushed up his visit to 3 months I put my hands over my face and cried loudly: "I am so scared, I am so scared" Of course our Angel doctor asked me why, relieved my fears and the asked...."Does 2 months make you feel better Marie?? Unbelievable. This makes me laugh since I am not the patient. We have a BRAIN MRI and PETSCAN coming up to assure that he is still stable.
This is the first time his numbers have stopped climbing after chemo stopped, on some chemo the numbers rised during treatment.
CEA.....2.1
CA27/29.....37.3
We want to take another moment to thank you all here for your continued prayers, love and support. Ed & I were told by his doctor that this is the best time to go on vacation and to absorb this newfound freedom as long as it lasts. It is scary not being on treatment and being stage IV but I am sure we will adjust slowly. Never been on this part of the journey but I am certain we will love it.
Love to talk more but I just got promised a dance from my 'Lil Oaker>>Believe51
Thank you all so much for loving us, you mean the world to us. And, do not forget that we could have never done this without y'all!! I know our Angels are looking down upon us and smiling!!
__________________
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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07-17-2008, 02:18 PM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Here's to many, many years of smooth sailing!!!!!
__________________
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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07-17-2008, 03:01 PM
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#3
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Marie,
I am so happy that things are going so well for you and Ed. Have a wonderful time on your vacation.
Hugs 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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07-17-2008, 03:03 PM
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#4
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Senior Member
Join Date: Aug 2007
Location: Stayton, Oregon
Posts: 69
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Marie and Mighty Oak,
Have a wonderful trip and I can't think of a more beautiful way to celebrate your cancerversary. Bravo!!!! All my love, NanaKaren
__________________
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
Karen
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07-17-2008, 03:44 PM
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#5
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Oh Marie and Ed......Heaven is right. A trip away and no treatment AND you are each with the love of your life. Nope, I don't think life gets any better than that.
Have an absolutely FABULOUS time away....hold hands, hug, smooch and dance the night away (well, if you're anything like me - 10:00 p.m. might be it...but hey...)
Prayers surrounding you both,
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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07-17-2008, 03:47 PM
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#6
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Marie great news about Ed! You guys definitely deserve a vacation. So, relax and enjoy it and have fun just being tourists.
__________________
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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07-17-2008, 03:50 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Marie and Ed: HOORAY!!! We are all so happy for you! You have certainly fought the good fight. We all hope your vacation is absolutely wonderful! Don't even think aobut us, but if you should, remember we are rejoicing for you! Have a wonderful time and tell us all about it when you get back. Hugs, Tricia
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07-17-2008, 04:39 PM
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#8
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Senior Member
Join Date: Oct 2005
Posts: 823
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DOING THE HAPPY, HAPPY DANCE here. Marie and Ed this wonderful news to hear.
Have a WONDERFUL vacation. Dance and Dance the night away.
__________________
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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07-17-2008, 04:48 PM
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#9
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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So happy for the two of you. Thank you for setting such a good example on marriage (being a couple). Thanks for sharing.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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07-17-2008, 04:54 PM
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#10
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Marie and Ed, I'm so happy for you guys! Cruise away and have a great time! Thanks so much for keeping in touch. Love ya, Bill
__________________
For Nicola
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07-17-2008, 05:59 PM
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#11
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Marie and Ed,
You both really deserve a wonderful vacation. Absorb all the sunshine. Eat, drink and be merry.
Best, Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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07-17-2008, 06:06 PM
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#12
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Marie and Ed,
I am so happy for you both. Have a wonderful time!!!!!
Best,
Karen
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07-17-2008, 07:13 PM
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#13
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Marie and Ed,
Can you hear the bubbles?
I am opening a bottle of champagne ..Yahoo
and Bon Voyage...you both deserve the best
stateroom on the ship.
Enjoy!
Big Hugs,
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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07-18-2008, 08:20 AM
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#14
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Marie and Mighty Oak,
I am so happy for both of you. I hope you have a great vacation!
Amelia
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07-18-2008, 05:56 PM
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#15
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Marie and Ed,
Have a wonderful time on the cruise. You both certainly deserve the R & R. Enjoy, enjoy!!
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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07-19-2008, 09:12 AM
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#16
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Marie- have a WONDERFUL cruise... I know you will! Mine was amazing and I would give anything to go again. I don't know the real diff between NED and stable, as I seem to alternate between the two...and that is not a bad thing. All I know is everyday that I appear to have the same old small spots and low markers with nothing new on scans is a good day!
__________________
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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07-19-2008, 02:33 PM
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#17
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Such good news. Have a good trip, relax and enjoy!
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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07-19-2008, 03:07 PM
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#18
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Senior Member
Join Date: May 2008
Posts: 118
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Cruise
Way to go Marie and Ed. Cruising is my all time favorite vacation. What ship are you going on? I never care where we go , as long as I am sailing. Enjoy this cruise and let us know all about it when you get back. I have to wait until November for my cruise. Smooth sailing, Jeanette
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07-29-2008, 01:25 PM
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#19
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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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Update
Ed and I will be leaving on September 20th from Miami Pier. We will be sailing in a large balcony room that will whisk us away to the Bahamas, San Juan, St. Thomas, St. Johns, and Grand Turk.
It is my gift to my Angel for the hard work he has done in the last 2 years. Last year during the Tykerb/Xeloda treatment we went to New Hampshire for his one year cancerversary. Being his 2nd cancerversary and not having any treatment at the moment, he deserves more.
We are driving down to Miami beginning on the 18th and I ask one more time:
If anyone is one is close to I-95 and wants to meet on the way down...e-mail me at my Yahoo address. We will be travelling early and will be in Miami a day early so we can make plans with you on the way down if you desire. So far I am planning on two visits with my friends here and I cannot wait for those hugs, they will be a nice addition to our vacation plans.
I want to mention again that we could have never made it this far without you all. Your support is supreme and means the world to us.
So here is to God, Mighty Oak, our Medical Team/Science and our Educated Extended Family here:
Thank You for being you, for showing us the light, for carrying us through the darkest of days, for the tender support and unconditional love you bring into our lives daily.>>Believe51
PS: The avatar is our ship and whenever I look at it I will remember what it took to get on board!!
__________________
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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07-29-2008, 05:32 PM
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#20
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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Wouldn't be able to meet you, but want to wish you good luck!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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