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11-08-2007, 07:32 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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~REstarting Chemo Tomorrow!!!
Thanks for the advice preparing us for our new regime which will start tomorrow. I did get the Emend for nausea, almost choked when I realized that 3 pills cost $394!! He is well prepared, the Infusion Lab that we go to is a new seperate beautiful building with lots of room, the nurses have stocked popsicles for our arrival. They always have them, they just made a request for grape ones for their dear friend Ed. I rescheduled a Monday infusion of Zometa to be included into his treatment. And little does Ed know, if his potassium level is still low he will be having an injection or a little orange drink!! Ew, I am evil, LOL!!
I love you all and know we can make it through this with all of your support. I still believe that we are due the other 50% of our miracle. We are petitioning for time here and I hope after 14 months of fierce fighting we are entitled to some more time together. Although I am rather concerned over this new treatment, I do think this maybe our magic bullet. I know I have been saying this for ions now. Inflammatory cancer is so aggressive but it does not intimidate us!! We are surely positive about this new regime.
Well Warriors, My Mighty Oak is going back in!! He is going to fight this with all of the passions he has to live. He will watch his granddaughter grow up. He will fight for every second. She now calls herself Grandpa Ed's Doctor.
Last night I looked out our living room window, I was saddened to know my leaves were leaving for the season. I made a comment out the window like someone was out there listening. I said, "This could be our last fall together, I need to savour this" and I said it for a purpose. Ed heard me and replied "No I do not think so, this will NOT be our last fall together, nor my last anniversary, nor my last birthday. I do not know when but this will NOT be our last!!!". I must say girls I needed that response. I started out testing him in a silly small way, teasing in a manner that might offend some (unless you have cancer and a sense of humor). Not My Oak, he challenged me and set ME straight!!
So here I am telling you all we are ready. This is so no one worries about us even though you will. Some of this is for our newbies, they need to hear our journies and struggles so they too can gather strength. So watch out CANCER, we will not let you win without the fight of our lives. You have no idea of who you are messing with. Keep us in your prayers for we are still in dire need of them. Keep my breast cancer Mother in those prayers too. We need you Warriors more than ever. Thanks in advance for the love and prayers. I would ask for LUCK, but it is the cancer who is in trouble now and I will only wish that goodbye!!
Still Believing<STILL Miracle Our Commanding>>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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11-08-2007, 09:00 AM
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#2
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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the new treatment
Hi Believe
I send all my best thoughts to you, your mom, and your Mighty Oak.
Ed has everything he needs to get through this round - you, the grape
popsicles and the $394 nausea pills! I will send good vibes to you every
day and hope that you breeze through these treatments.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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11-08-2007, 11:04 AM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I get chills from your posts, Marie - amazing for sure... the intimacy and depth of your relationship poured out on the page here is incredible and so deeply touching. I am sending blessings, prayers, and wishing with all my fingers and toes crossed for the miracle that you and Ed are fighting tooth and nail for. Love and appreciation for all that you teach me!
__________________
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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11-08-2007, 11:10 AM
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#4
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Senior Member
Join Date: Aug 2006
Location: Poland Ohio just a little south of Youngstown.
Posts: 473
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Marie, you and Ed are so blessed to have each other. You are always in my prayers.
Hugs to both of you and your mom
__________________
Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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11-08-2007, 12:56 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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Sending prayers for this "mix" to do the trick. Also sending much love to you both and prayers of thanks to God for blessing each of you with the other. To be blessed with such earthly love is such a blessing.
Love to you,
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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11-08-2007, 01:08 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Central Florida
Posts: 503
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You are no scrawny sappling compared to your big oak !!! Emotional connection is a beautiful thing, especially when the "tumor humor" can be interchanged without fear of offending.
I admire your strength, and of course Ed's determination.
I will keep you in my thoughts...
Maria
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11-08-2007, 01:46 PM
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#7
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Marie,
You are blessed to have such a wonderful relationship with Ed. Don't worry this will not be the last anything that you two share. You both have many years ahead.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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11-08-2007, 02:03 PM
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#8
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Prayers For You Sent In To The Stratosphere...
Oh those words from the Mighty Oak are answers to some of my prayers. I hear the determination, the resolve, the clear Intent and passion of Expectation. THAT IS THE RECIPE FOR SUCCESS! You and Ed are absolutely calling your other half of your miracle to you! Armed w/love and its powers. Prepared w/purple popsicles (my favorite color too) and anti-nausea meds. Don't get caught without them. I stockpiled. I would happily send you my hundred yr old Zofran that I've collected! Back in the day they'd only give you 12 at a clip. And they were $90 ea a decade ago. Think they'll still potent? If so, I am mailing them to you, along with all my love, big hugs and a load of prayers -- for our Ed, for you Marie, and for Mom!!! I have a big box ready -- waiting for your YES!!! You know you are always in my thoughts. Every single day. I believe in prayer! It is the best gift I can think of to send you.
Co-enzyme Q 10 -- 150 mg X 2 a day, help keep the heart healthy. +Perfusia 350 mg X 2 a day. Check it out, Marie. It will protect that big lug's heart, which is essential, cause it is so full of goodness and kindness and love!
Andi
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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11-08-2007, 02:04 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Lumberton, Mississippi
Posts: 118
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Hello Marie and Ed:
Your posts bring tears to my heart. I am and will be praying for you and Ed, and your mother. You are blessed to have each other, and your Mighty Oak is truly blessed to have you, especially during this time of fighting bc. Bless both of you.
Linda
__________________
Diagnosed 12/23/04
Biopsy 12/28/04
Lumpectomy 1/04/05
IDC, ER-PR-, HER2Neu+++
7mm tumor, Stage 1, Grade 3
6 CAF's
38 Rads
Finished 10/05
"Worry looks around. Sorry looks back. Faith looks up."
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11-08-2007, 02:17 PM
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#10
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Senior Member
Join Date: Apr 2007
Location: Mississippi
Posts: 600
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Marie and Ed, Tiptoe Misses you and wishes you all the best. I think the Emend is wonderful. It helped how food tasted as well as the nausea, for me. About the potassium, have they mentiioned why his is low? I have been having to take potassium for a while now, I am taking about 40 mEq (elixir) a day just to stay in the low normal range and I have been off everything but herceptin and tamoxifen since the middle of July.
Leslie
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
Last edited by fauxgypsy; 11-08-2007 at 02:18 PM..
Reason: raccoon damage to laptop, it does funny things
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11-08-2007, 04:15 PM
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#11
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Your post brings tears to my eyes. It is obvious there is a great love between you and Ed and I believe this is what will see him through. I believe you will have many seasons together. Prayers for you, Ed and your mother.
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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11-08-2007, 06:23 PM
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#12
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Prayers that this combination of tx will give you and your dh Ed many many more seasons together. You are both precious.
Hugs,
Lexi
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11-08-2007, 06:42 PM
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#13
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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I will be praying for you, your mother and your mighty oak. You are all very courageous and strong. Keep up the fight!
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11-08-2007, 07:43 PM
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#14
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Dear Marie and Ed,
Love and Strength, what a perfect combination!
Keeping all of you in my prayers.
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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11-08-2007, 09:33 PM
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#15
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Praying for you and your family, Bev
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11-08-2007, 09:44 PM
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#16
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Senior Member
Join Date: Aug 2006
Posts: 492
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Wishing you and Ed the best. It is so refreshing to see such solid love. I am a big fan of the mighty oak- we have 50 of them on our property and they are something to behold.
Do you have entertainment plans for the infusion (LOL)? I know it is a few hours. Maybe get some funny DVD's to watch on a portable player.
Hope the treatment does wonder without too many problems.
__________________
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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11-08-2007, 10:11 PM
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#17
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Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
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Praying for God's healing love for all of you, that a treatment will be found that will stop any more progress of cancer. God Bless.
__________________
Blessings and Peace,
Barbara
DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.
Accepting the gift of life, I give thanks for it and live it in fullness.
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11-08-2007, 10:12 PM
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#18
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Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
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Marie,
I am praying for you all. Everyday my firend and I will be sending extra prayers and thoughts for tomorrow.
__________________
Love and Hope
Karen
IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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11-09-2007, 07:39 AM
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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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Thanks Pals
Well Fine Warriors I wanted to take a moment and let you know that we are fine here in Little Rhody and ready to rumble. Husband is sleeping and I will be leaving work soon for treatment. I am wearing a long skirt, velvet blazer and gorgeous top that I bought for our Italy trip. The trip has been put on hold due to Ed's journey but I felt that he needed to see me looking beautiful again. I also have a fairly large BELIEVE pin on the blazer and a BELIEVE watch I spoiled myself with. Today I really feel beautiful and full of power, I have more Belief today than I have ever had and you know what a believer I have always been. (through my entire life not just because of breast cancer)
We are ready for battle. And again all I have to say is:
BRING IT ON!!!!
Please keep those prayers a-coming, we need them now more ever!! And if you remember, we will be in treatment about 1:30pm eastern time.>>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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11-09-2007, 10:00 AM
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#20
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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ULTRA Coenzyme Q-10 200 mg + adria = success
Hi Marie,
My integrative oncologist has spent his entire career proving that the addition of co Q10 while on Adriamyacin PROTECTS the heart. His study and abstract are being presented next week. He's an MD and also a PhD in pharmacology.
There is so much false information about anti-oxidants. If Ed's doc's do not object, please get him on this for heart health.
Here's the brand:
Douglas Laboratories
ULTRA Coenzyme Q-10 200 mg - chewable and emulsified
I take 2 per day.
xo Flori
__________________
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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