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Old 04-15-2009, 08:19 AM   #1
SoCalGal
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I've got the zaptron blues...

Well, today is day (8) of radiation. The middle of week 2 and next week they start "the boost". Started seeing the zaptron blush, and along with it started feeling the anxiety and depression that accompanies the realization of having "some" cancer. I use the word some, because it helps me to remember that there is a lot more of my body without it than with it.

In theory, this radiation will arrest the manubrium and sternum area mets. With my lungs stable, and my brain stable, that would mean disease stable. Disease stable...a reason to feel fortunate. Wish I could get there. Right now I am just sad, that once again, I walk those friggin' long halls and see all the suffering and fear, every day. I want to hold meetings with all the blue-gowned people, to tell them that they will make it through. It's just a freaky insert into my day and I have to shift/snap from my day into cancer world and then snap out. I am not really snapping out like I'd like.

AND I had to find another home for my dog, Beau. Because he is a resue, he should only have one handler, and I cannot handle him all alone. I've had two friends of my kids walking him, which was great for all, except an incident occured which un-nerved us all and made me realize that he really needs absolute consistancy of a single handler. I cannot manage him alone. A trainer I've known for 10 years wants him so it's a good situation for him and she immediately saw what a love he is. For me it feels like another loss due to cancer. I'm so attached to him but I've done my best for the past 4 1/2 months. He's rehabiliated from his surgery (when I got him he could barely stand without splaying out) and he's healthy, no longer under-nourished, his coat is shiney and fairly well-trained. Win-win except for me it feels like a lose-lose.

Did I mention that my hair is falling out again? Not in chunks like on adria but shedding, all of a sudden looking thin, like on carbo/gem or both times right after my kids were born. Hormones no doubt. Probably the connection to my near-daily headaches. And I'm hot flashing. How many times can a girl go thru menopause? This would probably have been my natural time to start, all of my girlfriends are flashing now, too. Hello 52.

Well, I sure didn't mean for this to be so long, but my honey has been out of the country for a week, so maybe I just needed a place to speak my mind and my heart.

It's Wednesday. Will pray today, extra hard.
Love,
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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Old 04-15-2009, 08:38 AM   #2
PinkGirl
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Cool


Sori Flori ... for everything ... the blues, Beau Beau, being back in the
hallways with the blue-gowned people ... bummer.

I know you're just in a slump that you'll be able to drag your sori-self out
of.... I know you can do. Thanks for venting on us ... that's what we're
here for, so I'm told.

Hang in there FloriGirl. You will get through this just like you've done
before. I have faith in you!

Very happy that you've found a good home for Beau. Will you able to
visit him there????

My parting words to you:


Whoo oooh
Whoo oooh
I'm on fire
I'm on fire



I know there's a pot of gold for me
All I got to do is just believe
I'm so happy doin' the neutron dance
And I'm just burning doin' the neutron dance
I'm so happy doin' the neutron dance
I'm just burning doin' the neutron dance

http://www.youtube.com/watch?v=WhcjRoU0C7g
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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

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Old 04-15-2009, 09:11 AM   #3
WomanofSteel
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Flori I think Pink has the right idea. Maybe you need to put on some happy dancin' music and do your own neutron dance! Nothin' like a little music to pick ya up! Hang in there kiddo!
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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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Old 04-15-2009, 10:19 AM   #4
Shobha
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Flori,

Hang in there, soon your honey will be back and you will feel much better. Him being away, thought of losing beau and fighting this battle once again must be draining but you really are such an inspiration to me. I am 41 with kids that are 6 and almost 5 now. I think of you each time when I feel fear or get weak and draw strength from your fight to stay alive and raise your kids! Kudos to you.

Praying hard for you to feel better soon and for your wry sense of humor to kick in again!

hugs,
shobha
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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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Old 04-15-2009, 10:43 AM   #5
chrisy
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Oh Flori,
You sound really tired. Or maybe it's just that I'M really tired...my hubby just took off Monday night for 3 weeks trekking in Nepal, and when he's gone I just feel so alone. I mean hey, its supposed to be all about me, right? Where's my main hug-man when I need him? So Flori, it really does make a difference when our peeps are not around to hold us up.

But of course, WE are here to hold each other up so I'm glad you dropped in.

You are so special and so strong - even when you don't feel strong, you still know there's a place outside of cancerland where you belong.

I agree with Pink and WOS, charge up some happy music and curl up until you just can't keep yourself from dancing. Hang in there.
Chris
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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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Old 04-15-2009, 10:55 AM   #6
Mary Jo
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Just wanting to send you a big hug........a love from my heart that only another "sister" can give and my prayers to surround you.

Love to you Flori..............

Mary Jo
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"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 04-15-2009, 12:38 PM   #7
tricia keegan
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Flori,

Just sending hugs and sympathy to you, I'm sorry about beau but how wonderful you've found him a safe secure home. I hope you can visit him.
I love Pinks reply to you, took me back years and I'll be humming that song all night lol...thanks Pink!
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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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Old 04-15-2009, 01:00 PM   #8
MJo
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Sounds like Beau is recovered and feeling his oats and is testing us humans. Sounds like he's a real Alpha and needs a strong handler. I think if you had him more than just 4 1/2 months and if you'd been able to work out who's the boss, things would have gone better. But you need to take it easy now, not train a tough boy. He's a real beauty and I'm not surprised a dog trainer wants him. She recognizes quality. She'll be able to teach that naughty boy that he's not the boss.

Take it easy. FInish treatment and get better.
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MJO

IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 04-15-2009, 03:08 PM   #9
Sheila
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Flori
sounds like cancer has a strange hold on both of us this week...its crazy how we survive this emotional roller coaster, endure the weird hairdos, dry pale skin, hot flashes, and still find things to be happy about....so sorry to hear about Beau, but happy you were able to place him with someone who will love and care for him...like you needed this stress on top of everything else...
you need a radiation vacation....something I used to say when i worked at Nuclear Power Plants
Take Pink Girls Advice...listen to some good oldies, think positive thoughts, know that we are all here for you/ and if it makes you feel any better, I feel way older than the 57 i am right now....way older.....time to put the tunes on....
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"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 04-15-2009, 06:24 PM   #10
Jean
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Hi Flori,
I was just thinking about Beau and how lucky he was to have you taking the best care of him for 4 1/2 months
which is a win win for both of you. You have the joy of knowing that because of you, your kind love and attention he is thriving.

Being a dog lover myself I understand how the decison to give him to the trainer was not an easy one, but again because of you he is doing so well. Hopefully you will be able to visit with him.

Have good thoughts on what a great accomplishment you have reached with Beau. Good thoughts will help chase out those blues along with the good music.
Plus your honey will be home soon.

You are a strong fighter and even the best fighter needs some R and R !

Hugs,
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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Old 04-15-2009, 08:10 PM   #11
caya
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Oh Flori, morning glory - what's the story?
We're not sorry that you are venting here. That's what this site is fory (lol- had to throw that in...)

Be strong, we are all with you as you walk down those hallways...

all the best
caya
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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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Old 04-15-2009, 09:46 PM   #12
ElaineM
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Wink I've got the zaptron blues...

A hug to you when you need it .
Take care of yourself and remember you are a strong person and you will get through this, so hang in there and keep putting one foot in front of the other and go for it !!
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 04-16-2009, 04:10 AM   #13
Mary Anne in TX
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Morning, Flori!
I'm sure hoping for bluer skies and more peaceful thoughts for you today. Lots of love, 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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Old 04-16-2009, 04:41 AM   #14
schoolteacher
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Flori,

Hope you feel better today. I am so sorry about Beau.

Amelia
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Old 04-16-2009, 06:47 AM   #15
Believe51
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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
Flori, I am so sorry that you are in such tough circumstannces. Like I said in Sheila's thread, I wish sometimes that I could jump on a plane just to give a hug.

Beau is one lucky boy to have been loved and cared for by you. This decision was probally just as hard to come up with as what to do next cancerwise. It saddens me to hear that you can not care for him like you ideally want to. You have tried to give him your all but it cannot be balanced. Sometimes choices are made for us, unfair as that sounds. It takes on hell of a person to admit that you can not give him the care you feels he deserves. I cried for you when I heard what you need to do. I cried not only for Beau but for your loss as well.

Well Girlie, two more days left of radiation, maybe one after this post. I appreciated how you worded that the cancer is not everywhere. Ed really needed your post last night. Once more he is at those same crossroads. I do not ever compare one journey with another, they are all tailored differently. Yet, sometimes when I read your honest feelings, I see my husband in your words. You have helped him more than you shall ever know.

I am sending you special positive thoughts and some healing prayers for today. You are always in my heart and your adoption into my heart has made me a better caregiver for my best friend. Before I go I want to say that we are still planning to dance with NED together. Get your dancing shoes ready and polished woman!! I love you like a sister, Flori and Ed and I are blessed to know such a special person.

Also, as I read your post I shuttered to think where we would all be without one another. Ewww, I cannot even go there!>>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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Old 04-16-2009, 07:13 AM   #16
mmoons
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sending you love and hugs

Flori-

What a selfless, loving thing you did for Beau! You did what you thought was best for him even though it must just break your heart daily missing him. You're amazing! I read your posts and think about how strong you are. I am sorry you have the blues but I hope you can just have them and take a break from being a warrior. Like Jean said "even the best fighter needs R & R". Tomorrow is a new day and new perspectvie and renewed hope & energy. I am praying that you feel better soon and that your honey is back quickly and feeds your soul with all the wonderful things you need and deserve right now.

Love,
Maureen
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My loves

IDC & DCIS, HER2+++ Diagnosis: October 1, 2008
  • Tumor: 6.8 centimeters, never showed on mammograms
  • ER-/PR-
  • November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
  • Stage IIIc
  • Lapatinib Clinical Trial start: November, 2008
  • Surgery: May 5, 2009
  • Started Herceptin: May 19, 2009
  • Started Radiation (33 rounds): June 10, 2009
  • September 2009: Moved to Michigan to be closer to family
  • 12/09 - still on Herceptin until May 2010
  • August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
Blog: http://moonsfamily.blogspot.com
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Old 04-16-2009, 06:02 PM   #17
Carolyns
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Hi Flori,

Thank you for posting your thoughts. I am sorry that you are having a rough time. Your foster dog was very lucky to have you and it seems like he was good company to you. I guess when you put yourself out there you run the risk of hurting a bit when it is time to let go... I know that I don't even have the courage to put myself out there.

As for the ups and downs of this emotional roller coaster... it is so strange to walk in these two worlds. Sometimes I feel like I have one foot on the dock and the other in a small boat that is floating away... struggling to keep from falling in the water... and straining to keep standing. I go from the board listening to heart wrenching stories to the real world listening to folks go on and on about a bad hair day - I think, "any day with hair can be a good hair day".

Flori, You are such an inspiration. I hope that you are feeling better but I know that sometimes it is harder than other times to pick yourself up.

You are in my thoughts and prayers.

Love, Hope, Peace, Carolyn
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Old 04-16-2009, 07:14 PM   #18
Laurel
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Location: Hershey, PA. Live The Sweet Life!
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Dear Worried and Weary Flori,

After reading these many posts I asked God what I should say to you. He whispered immediately, "tell her I love her."

God loves you, Flori.

He loves, loves, loves, loves, loves YOU.
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Smile On!
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Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 04-16-2009, 08:57 PM   #19
Gerri
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Posts: 900
Flori,

Hope the blues are long gone and you are feeling better. I hated radiation and the daily trips to the same place - felt like it lasted forever.

Hope your honey comes home soon and makes things right again.
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Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
- Robert Brault
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Old 04-18-2009, 04:40 AM   #20
Joan M
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Hi Flori,

I agree with how you feel. My goal this year is try to stay out of the hospital. Just hold on until the end of treatment. Then you can "rest" for awhile being stable.

I'm sorry to hear about Beau, but I know you were a good mother and helped him a lot.

Hugs,

Joan
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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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