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Old 06-25-2012, 11:49 AM   #1
Emelie B
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Wanted to share

Hello to all you lovely ladies and gentlemen,
I just wanted to let you know that I am now in the Denver Hospice care program and have a wonderful team of support people. I love, love my nurse Peg. She comes by my house once a week and she was truly meant to be a hospice nurese. Such caring and compassion. She makes my day. I am on oxygen most of the time now and anything she thinks I need is delivered to my door. It makes it so much easier on my family. I am allowed to drive just short trips. So no more Walgreens where they know my car now when I pull into drive-up! I also use a liquid morophine when I need a boost in-between the long acting pill form I take once every twelve hours. When I need the liquid for quick relief (usually in 10-15 minutes) I put the 2.5-3 ml on a sugar cube because it tastes absolutely terrible, and I add the magic ingredient-2-3 drops of Grand Marnier. Just like that "spoon full of sugar".
So, as my time goes by I am now putting the last pieces into place and I wanted to share what I read every night with you. It gives me great comfort and I hope it helps anyone who needs to feel "carried too".
Best regards to all,
Emelie

Footprints
One night I dreamed I was walking
Along the beach with the Lord,
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints.
Other times there was only one.
This bothered me because I noticed
During the low periods of my life when I was
Suffering from anguish, sorrow or defeat,
I could see only one set of footprints.
So I said to the Lord, “You promised me,
Lord, that if I followed you,
You would walk with me always.
But I noticed during the most trying periods
Of my life there has only been
One set of prints in the sand.
Why, when I needed you most,
Have you not been there for me?
The Lord replied,
“The times when you have seen only one set of footprints
It was then that I carried you.”
__________________
Nov. 2006-IDC with Her2 +++
A/C for 3 rounds
Dec. 2006- Herceptin and Taxotere
March 2007-MRM with 8 of 14 lymph node involvement
May 2007-36 Rads
Sept. 2007- Stopped Herceptin
Jan. 2010- CT scan shows enlarged lymph nodes in sternum and lung involvement
Feb. 2010-PET scan shows mets to liver, lung, lymph nodes and bone
Feb. 2010- Started Herceptin/Taxol and Zometa
April 2010-PET scan clear. Herceptin and Zometa
June 2010- Stopped Herceptin continue Zometa and still NED
August 2010-Back on Herceptin and Zometa every 3 weeks
August 13, 2010- Had another port placed
August 24, 2010- PET scan clear. Herceptin and Zometa every three weeks
Nov. 2010-PET scan clear
Feb. 2011-Brain MRI clear
March 2011- PET scan clear
May 2011- PET scan clear
Sept. 2011- PET, Mammo, Bone Scan all clear- Herceptin only
March 2012-Recurrence in lungs and tumor around pota hepatis artery. Added Navelbine to herceptin
April 2012- Entered palliative care
June 5, 2012-Entered hospice care
Planning my memorial
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Old 06-25-2012, 11:54 AM   #2
chrisy
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Re: Wanted to share

Emelie,
I've been thinking of you and am glad to see your post. Who would think of Grand Marnier...

Footprints is one of my favorites as well. We all need to feel, and be reminded that we are, carried.

Much love,
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 06-25-2012, 11:59 AM   #3
Shobha
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Re: Wanted to share

I have been thinking of you too, Emelie. Your never fail to amaze me. Taking control of your life in this unique manner is very courageous - God bless you!

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 06-25-2012, 12:45 PM   #4
7andcounting
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Re: Wanted to share

Emelie,

So glad your experience with palliative care and with hospice has been so positive. That is a blessing! Thank you for sharing the encouraging message with us, that reminds us that we are not alone, even when it can sure feel like it. It is a comfort to know we don't walk through these difficult times by ourselves. Hugs to you.
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Old 06-25-2012, 01:48 PM   #5
Ellie F
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Re: Wanted to share

Emelie
I read your post with tears in my eyes,I just couldn't stop them.I carry a small card with this same verse on in my purse everyday as it was given to me by my mum shortly before she unexpectedly passed away. To this day I believe she wanted me to find comfort knowing we are never truly alone.
Love Ellie
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Old 06-25-2012, 04:22 PM   #6
KristinSchwick
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Re: Wanted to share

Oh Emelie,
Thank you for sharing your life, wisdom and advice with so many of us. I love footprints too- I will be thinking of you when I look at it on my wall tonight.
Stay strong. God bless,
__________________
[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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Old 06-25-2012, 06:19 PM   #7
Laurel
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Re: Wanted to share

Well, brave Emelie, what can I say? You've got tears in my eyes too! Thank you for sharing your "journey" with us. I'll sign off with a "so long and bon voyage!" I've always liked Grand Marnier over vanilla ice cream. Next time I have it I will think of you. Peace.
__________________

Smile On!
Laurel


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

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

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Old 06-25-2012, 06:26 PM   #8
KDR
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Re: Wanted to share

Dear Emelie,
Thank you dearly for sharing your journey with us. I, too, had tears in my eyes reading your post. The peace you feel shines through--I am so happy for that.
Love
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 06-25-2012, 06:34 PM   #9
jml
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Re: Wanted to share

Oh Emilie~
Footprints is one of my favorites too. My dad kept a copy of it
in his wallet and when he passed a couple of months ago, I took it and carry it in my own wallet now. I treasure it.
It takes much courage to lay down the gloves and to ask to Lord to carry us.
I honor you Emilie and your journey.
We're all here to share each step that you will share with us~


Jessica
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Old 06-25-2012, 06:50 PM   #10
Jackie07
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Re: Wanted to share

Emelie,

There are many, many more footprints around you on the beach... The sea washes them away quickly, but your footprints, as well as those of many others, will stay etched on our hearts.
__________________
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
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Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
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Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundless(granules?) nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.

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Old 06-25-2012, 07:49 PM   #11
LoisLane
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Re: Wanted to share

Dear Emelie Have also been thinking of you. What a gracious lady you are. So caring to take the time to fill us in on this journey. I really liked your "spoonful of sugar" comparison. You are teaching us so much about a dignified letting go. God bless you xo
__________________
August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
ER+PR-
Stage I Grade 2
Radiation and Femara

November 2008
Lumpectomy right breast
2 tumours .03 cm and .05 cm and extensive DCIS
.05 tumour Her2+
lymph node negative
venous/lymphatic invasion "indeterminate"
ER+PR low postive
Stage 1 Grade 2

January 2009
bilateral mastectomy
chemotherapy taxotere
Herceptin one year
Femara
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Old 06-26-2012, 10:42 AM   #12
ElaineM
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Wink Re: Wanted to share

Thank you for the update and the lovely Footprints poem. The poem is one of my favorites.
I am glad you are getting good care.
Peace, comfort and love to you.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
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Old 06-26-2012, 11:01 AM   #13
suzan w
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Re: Wanted to share

Emelie, thank you for sharing one of my favorite passages and reminding me, once again, of the importance of the message. Your serenity at this time is an inspiration to us all. Peace and love to you and your family. xo Suzan
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age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 06-26-2012, 08:10 PM   #14
Delaney
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Re: Wanted to share

Emelie, I hope I am as brave when the time comes. Peace and love. xx
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Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 06-26-2012, 08:58 PM   #15
Pray
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Re: Wanted to share

Emelie, I'm also amazed with you! (Still thinking of others!) Thank you so much for your post. You are a remarkable Blessing to all of us! I'm so glad you have Hospice to help you along your journey. Gods blessings to you and your family. you are all in my prayers.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 06-26-2012, 10:11 PM   #16
Ceesun
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Re: Wanted to share

I am in absolute awe of you and admire your courage and dignity. You are a lady full of grace. May God bless and sustain you and all those you love. Ceesun aka Cathy
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Old 06-27-2012, 08:57 AM   #17
Mary Anne in TX
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Re: Wanted to share

Emelie, I waked very early this morning thinking of you. I have both of my granddaughters for a few days and one of them is an Emily. I am so sad about your circumstances and so grateful that you have chosen to share your decisions and courage with us. I have felt empowered by your choices and your peace. It's only been since BC and being older that I feel the burden and blessings of the people I have chosen to put into my life. Your willingness to share your journey has been one more confirmation just how very important our "people environment" really is. Thank you for being one of my blessings in life. ma
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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 06-27-2012, 01:08 PM   #18
Vicki revised
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Re: Wanted to share

Emelie:
I also receive comfort and strength from Footprints. May God continue to hold you in his embrace as you prepare to enter His kingdom where there is no pain or worries. You are an example of courage for all.
__________________
Vicki
Lord, give me the comfort of Your embrace and acceptance of Your will.

3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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Old 06-27-2012, 03:11 PM   #19
tricia keegan
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Re: Wanted to share

Emelie I was touched by your post and my prayers and thoughts go with you! xx
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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 06-27-2012, 07:26 PM   #20
rhondalea
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Re: Wanted to share

Thinking of you, Emelie.

Rhonda
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