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03-12-2008, 02:03 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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~ACS called, asked me to speak at Statehouse!!
One small step for man, a large leap for mankind. My Advocate from the American Cancer Society called today to ask me to speak at the Statehouse about the trials and tribulations on this journey. All problems one has faced will be discussed. FYI: At the moment we are without medical for Ed and will get it back after we make $5,200 in bills. And no girls no matter what they say, there is little logic to the formulas done to get these numbers (our income has changed and still no change in medical!!). I am sick of this system who preys on fellow cancer patients and I am going to do my part to make history here in Rhode Island first. My plans after that include going to Washington DC!! No matter how much or little money one has should not be able to effect how their journeys go but IT DOES!!
I am going to speak in front of thousands of people to try to help thousands of people. Kinda my way of giving back to keep that 'circle' completed.
Girls you know I am not shy and the crowd thing will not bother me, it is a small price to pay TO BE YOUR VOICES and the least I can do to give back. Without this site and the ACS I would be lost.
So when I stand and plead.....in the back of my head all of your faces and voices will be represented!! I will speak from the bottom of my heart to try to change some parts of these journeys. We should be worrying about who should be our doctor, not how will we pay!! Again, these are not the only issues to be addressed here ($$).
So family.....this one is for you. I am taking you all with me!!
Never lose your Belief!! Love>>Believe51
PS: If there is something you have encountered on your journey and needs to be addressed.....TELL ME so I can be your voice.
__________________
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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03-12-2008, 02:25 PM
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#2
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Marie,
And I don't doubt for one minute that you will change things. You are a strong, intelligent woman with a passion and you will take this far.
May God give you strength to fight this fight and help change things where there needs to be change. And BOY OH BOY does there need to be change.
I'm proud of you and all you have done since Ed's journey began. You've taken a negative and turned it into a HUGE positive.
Peace to you ....
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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03-12-2008, 02:56 PM
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#3
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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I support your motions 100% be my representative ...hey I'm American citizen w/cancer stage IV and a bad insurance and w/a lot of medical bill to pay too...LOL
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Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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03-12-2008, 03:02 PM
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#4
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Marie,
Congratulations...I am so happy to see another affected by this disease become empowered and advocate for all of us.
As a stage IV survivor, Ed is eligible for social security disability but it takes another two years to qualify for medicare.
Hugs and well wishes,
Christine and Joe
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A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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03-12-2008, 03:10 PM
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#5
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Wow....we...
Marie,
Washington better watch out...the guys on the hill don't know what they are in for....GO GET'EM GIRL.
Proud of you,
Jean
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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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03-12-2008, 05:03 PM
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#6
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Wow, Marie! They don't know what they're in for! You are a powerful force and we will be there with you in spirit! As always, you're in my thoughts and prayers, sweetie. Love, Bill
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03-12-2008, 07:15 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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You go Marie!
__________________
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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03-12-2008, 07:32 PM
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#8
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Marie, This is a wonderful opportunity! 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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03-12-2008, 08:08 PM
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#9
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Marie, thank you for being our voice, you are wonderful!
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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03-12-2008, 08:29 PM
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#10
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Senior Member
Join Date: Oct 2005
Location: southern california
Posts: 287
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I am so proud of you! I know you will speak for many of us. I do not think it will be hard to get to $5,200 seeing that one of my epogin shots was billed to my insurance at $9,400. The price that is paid is astronomical, I think it is due to the fear factor. I work at an animal hospital that also does chemotherapy for the animals and we were charging $150 for the same shot!!! I know there are other factors involved, but I just have a hard time with the difference in what I see charged for the vet industry and what I see in the human market. I know that the vet industry is not loosing money on the shot, so what do you call what the human market is doing???
Alice
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03-13-2008, 07:25 AM
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#11
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Ok, warrior wonder, the rules are....please take pictures!!!!!!
I can just hear it now! I'm so proud of you and excited for all of us to have your voice standing firm for us! You will be great! But get someone to go and just be the picture person for the time. We just have to see it!!! Much love to ya, girl. 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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03-13-2008, 08:01 AM
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#12
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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That is so fantastic Marie - you will be wonderful!! Wish I could be a fly on the wall - LOL!
You know I can't believe the medical system in America - we are so very fortunate in Australia that we have Medicare for all! It's so hard to believe cancer patients have to pay for life-saving treatments! So much added stress and burden on the family too - but I'm not telling you anything that you dont already know!
Maybe your talk would be recorded on video?
Great news!
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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