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Old 07-29-2010, 12:39 PM   #1
Ellie F
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Smile Good news today

Hi everyone
After an anxious and tearful week I finally decided to ring my onc.I've been having dizzy spells and a strange sensation of falling which seemed to be getting worse.
He saw me as an urgent case within 24 hours and immediately arranged a brain MRI today.Thankfully the scan was normal.
I am so grateful to God, my onc (who was shocked when I kissed and hugged him) and all of you here on the board for the support I receive every day.

Ellie
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Old 07-29-2010, 12:45 PM   #2
v-ness
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Re: Good news today

dear ellie - i am thrilled for you that you got good news and that you put your mind at ease by getting tested. you know, i once had similar symptoms and for the life of me couldn't figure out what was wrong. turns out i had just enough allergy symptoms in my ears, but not enough to make me sneeze or any other symptom i would have recognized. it was a very troubling sensation but at least now i know what it is when it happens. valerie
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8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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Old 07-29-2010, 12:48 PM   #3
Sherryg683
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Re: Good news today

Great news, nothing like getting clean scans. Now that we have cancer, things that happen that we usually would have ignored get magnified. I can't tell you how many brain MRI's I've had that turned out to be nothing more than sinus infection. I started having these crazy buzzing , vibrating sensations in my head when I would be almost asleep, like something shorting out. My oncologist laughed at me when I told him about it, but ordered a scan anyway. I told him if my head short circuited or blew up, it would be on his conscience. My oncologist jokingly started calling me the crazy brain lady....sherry
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Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 07-29-2010, 01:10 PM   #4
Chelee
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Re: Good news today

Hi Ellie,
That is wonderful news! I am doing the happy dance for you. Woo hoo. That is so nice of your onc to get you in so quickly...it's so stressful/scary when we have symptoms and aren't sure what the cause is. But it's sure a good feeling when you get the all clear!

It's nice to hear good news...go out and celebrate.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 07-29-2010, 02:37 PM   #5
tricia keegan
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Re: Good news today

Ellie, I can only imagine your relief, enjoy that feeling!!!
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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 07-29-2010, 05:13 PM   #6
CourtneyL
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Re: Good news today

Oh Ellie, I'm so sorry you had to go through that horrible anxiety of thinking something was wrong. Thank GOD your scan was normal. No one will ever accuse us Stage IV gals as being oversensitive or hypochondriacs. With this disease, you just never know. I am glad you are so vigilant and that you take charge of your health. This will help you continue to thrive. Much love to you from across the pond!!!
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4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.

Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial

Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED

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Old 07-29-2010, 05:52 PM   #7
Laurel
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Re: Good news today

Gosh, Ellie, so glad it was a false alarm! Wouldn't want to loose one our favorite Brits! Hope you're celebrating with something that will make you truly dizzy! LOL.
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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 07-29-2010, 06:24 PM   #8
Jackie07
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Re: Good news today

Ellie and Sherry,

So glad to hear the good news!

I wondered if the weather (tropical storms, etc) change has anything to do with our 'dizziness, falling sensation...'. I was experiencing the same thing and went to my family doctor today. (Mainly because I've had some strang bowel change) He ordered a complete blood count and it came back normal (actually the number's much better than 6 months ago.)

I'm supposed to bring back the stool sample kit next Monday. Judging the way I am feeling right now (the abnormality happend last weekend) there's probably nothing to be concerned about.

But we must remain vigilant...
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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.
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Last edited by Jackie07; 07-29-2010 at 06:30 PM..
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Old 07-30-2010, 04:20 AM   #9
jhandley
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Re: Good news today

Hi ellie
Once I had a reloading dose of herceptin given by mistake over 45 minutes instead of 90. I was ill for a week..felt like I was on a boat, falling, weird sensations...etc.
Other times I have had funny vertigo moments ..I think it is the herceptin that does this to us.

Jackie (down under)
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Old 07-30-2010, 06:26 AM   #10
yankeebikachic
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Re: Good news today

Hooray for Ellie, must be a huge burden off your mind!
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4/06 Found small lump, biopsy + at 34 yrs.
5/06 Diagnosed IIIC, lumpectomy, 11/11 nodes HER2+
6/06 port placed. 4 Ad/Cyt and 4 Tax.
11/06 bilateral mastectomy
12/06 begin Rads
1/07 Finished Rad-started H, weekly for one year.
1/08. Finished H, scan showed activity in nodes, Doc says 'not to worry about it' and sends me on my way.
7/08 Scan shows numerous involvement in armpit, also large active nodes in supr. clav.
Doctor refused to give me HER2 meds.
8/08 fired doctor, found another. Started Tykerb/Xeloda. After one round, nodes are shrunk and normal sized!
12/08 NED continue Ty/X
3/09, 6/09, 9/09, 11/09, all scans show NED
Dropping X, continue Tykerb
As of 6/10, 3/11 still negative, continuing Tykerb...
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Old 07-30-2010, 08:26 AM   #11
Faith in Him
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Re: Good news today

Yeah ..Great news.
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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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Old 07-30-2010, 02:51 PM   #12
Joan M
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Re: Good news today

Ellie,

Great news!

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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Old 07-30-2010, 03:20 PM   #13
CarolynME
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Re: Good news today

Ellie,

This is great news indeed!!!
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1/10 Diagnosed with IDC; 3.7 cm tumor
3/10 Left Radical Masectomy; 2 /16 nodes positive - Grade 3 ER+/PR-/HER2+++
4/10 BRCA1 and BRCA2 both negative
4/10 Pet Scan showed another node .07mm positive on the internal mammary area
4/10 ALLTO Trial - randomized for Arm 4 - Taxotere/Carboplatin and Herceptin only (no Tykerb) Began 6 cycles Taxotere/Carboplatin (every three weeks) and Herceptin weekly for eighteen weeks and then every three weeks until the end of April 2011
Radiation to begin 9/2010
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Old 07-30-2010, 08:04 PM   #14
sassy
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Re: Good news today

What wonderful news!

I remember my onc telling me something very important when I was concerned over a symptom and requested a scan......"There's something to be said for peace of mind." Amen!
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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.......
14YEARS NED!
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Old 07-31-2010, 08:29 AM   #15
Lori R
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Re: Good news today

Ellie,
A big sigh of relief for you!!!

Thank you for taking the time to post good news. It is such a reminder to us all that while being vigilant is the best approach, our aches/pains do not always mean the worst.

Sooooo happy for you....Lori
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 08-02-2010, 02:40 AM   #16
Ellie F
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Re: Good news today

Many thanks for all the good wishes and suggestions.I find it hard to post good news when so many are having a hard time. This time I just hoped it may lift everyones spirit while we race for our cure.

Hugs
Ellie
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Old 08-02-2010, 05:41 PM   #17
mmoons
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Re: Good news today

Oh Ellie....so happy for your good news!!! Yeah!!!!!!!!!!!

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 08-02-2010, 05:59 PM   #18
Midwest Alice
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Re: Good news today

Thanks for posting your good news.... I am so glad you had the scan. We have to watch the signs and act. Thinking of you, Alice
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
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Old 08-02-2010, 08:54 PM   #19
Barbara2
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Re: Good news today

That's wonderful, Ellie! Oh, how we can relate! Now go celebrate your good news and renewed energy!
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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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Old 08-04-2010, 06:10 AM   #20
Sheila
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Re: Good news today

Ellie
So happy the report was normal.....time to celebrate the good news!
__________________
"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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