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03-19-2012, 06:24 PM
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#1
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
In the face of great odds, I can do it.
In the words of one of my one biggest heroes, “In the face of great odds, know too that you can persevere and succeed no matter what the odds.”
This is what is happening to me now. My doctors are telling me “no”, but my body and mind and my soul are telling “yes”. “Yes you can.” “Yes you can overcome this madness called cancer.”
At last week’s appointment, Dr. Smith told us that I had few options left, none of them very bright: alternative therapies (herbs, supplements) or palliative care – which means just taking medications to keep me comfortable (e.g., pain killers) and just let nature take its course.
My choice? Neither. I fought too hard to just give up. I’m not going to give up, just like that. So my next step is to seek out a second opinion doctor who I’ve seen before and see what chemos are left for me. If we find a new option and try it, we will see the results quickly; and if we don’t see results, well, we’ll be right back here making more difficult decisions.
In other news, life is good. It’s been filled with its challenges. Remember that after I got back from the hospital, I found myself slightly paralyzed and needing to work on my upper body strength and still find myself in a wheelchair. My body strength is coming back and I’m getting better. This improvement gives me great hope and encouragement, because when you see improvement you know that things are going in the right direction.
This week we will meet with another doc at UCSF. Please pray for me if you are the praying sort, so we can find out exactly what is going on.
---------
A note from Jay :
It’s been a month since our last update – and it has been a month of “bonus time” – days that might not have happened - and ones in which we are thankful for. We’ve done coffee and pastries in our neighborhood, countless lunches at Chow, strolls through Golden Gate park and Crissy field on the weekends, attended cocktail parties with friends, and a lot of special quiet dinner + movie + microwave at popcorn at home. This is also incredibly painful though. Courtney’s memory is affected by whole brain radiation, we are both struggling with an uncertain future, and each day sometimes feels like its own mental and physical Ironman. Thank you for supporting us, and for understanding us being in our own private island for the past month or so, while we wait to see how this all unfolds. We’ll keep you posted, and ask for your continued prayers.
__________________
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
15 Years NED
I think I just might hang around awhile....
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03-19-2012, 06:29 PM
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#2
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
Prayers for sure! God bless you both. Jay, that was a very touching note. Keep the faith.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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03-19-2012, 06:39 PM
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#3
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
Thank you Laurel for the info. I will keep praying for Courtney and Jay through this difficult times.
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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03-19-2012, 07:11 PM
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#4
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Senior Member
Join Date: Sep 2011
Location: Lovington, New Mexico
Posts: 100
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
Ugh...keep fighting and hoping and working and doing. My prayers, thoughts, fine wishes and so on are with Courtney!
__________________
7/25/2011 Diagnosed DCIS and IDC on left from biopsy.
8/9/2011 Bilateral mastectomy
7mm clear margins Stage 1b, grade 3, 0/4 SLN ER- PR+ Her-2/neu +
9/19/2011 Started TCH every 3 weeks, TC for six cycles, Herceptin for 1 year
May all of your dreams bloom like daisies in the sun....
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03-19-2012, 08:39 PM
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#5
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Senior Member
Join Date: Apr 2011
Posts: 403
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
I pray that courtney will find light through the tunnel of cancer fight. So many young women here suffering from this disease. There are alternative therapy that Courtney can try and it does not interfere with chemo like herbal medicine or qigong
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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03-19-2012, 08:50 PM
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#6
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
Gods blessings Courtney and Jay. You are in my prayers and so is your family. My Dad survived stage 4 lung cancer and was given tops 6 months to live and he is ned today at 83! Literally anything is possible!!!!!
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03-20-2012, 04:19 AM
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#7
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
Courtney and Jay
You are always in my prayers wherever I am!
Blessings don't always come in the way we want but I guess that the day you two met was one of them.
Hope the second opinion brings hope and a fresh plan.
Ellie
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03-20-2012, 08:28 AM
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#8
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
Sending big hugs from Canada - Many blessings to you Courtney and Jay.
all the best
caya
__________________
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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03-20-2012, 08:56 AM
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#9
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
Praying for you. Ceesun
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03-20-2012, 09:21 AM
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#10
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
Courtney and Jay,
I am so very glad to hear from you both. I have been waiting for an update. You both are in my prays. Let us know which chemo or chemos you will do next.
Amelia
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03-20-2012, 10:07 AM
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#11
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
Keep going Courtney (and Jay). Keep searching for the right answers and treatments. Keep enjoying life.
If you are interested in alternative therapies there are now many hospitals in the U. S. that combine conventional and alternative or
complementary therapies for cancer.
Take good care of each other.
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03-20-2012, 07:28 PM
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#12
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Senior Member
Join Date: May 2011
Posts: 137
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
Prayers coming your way Courtney and Jay! Keep fighting and letting your indomitable spirit win! I think of you often and it was good to hear an update, but I am also so glad you've had such a private and special time together.
Blessings to you- love and prayers too!
__________________
3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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03-20-2012, 07:50 PM
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#13
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Senior Member
Join Date: Jun 2011
Posts: 107
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
Courtney, if you have the will to get a second opinion and to try and fight, I say to go for it. This cancer journey can be exhausting, so I am so glad that your spirit says to keep fighting. I hope your second opinion Dr. can think outside the box and will give you some good options. So glad that Jay is with you to help you fight. Glad your upper body strength is improving. Yes, I will pray for you both!
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03-20-2012, 08:04 PM
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#14
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
Go Courtney! Go Courtney! You are awesome. You keep proving them wrong and enjoy your days while doing so.
__________________
 http://butdoctorihatepink.com
08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative
10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.
I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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03-21-2012, 04:15 PM
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#15
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
Prayers going out to you Courtney and Jay. I believe that Doctors don't know EVERYTHING, only God does.
__________________
Linda
Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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03-23-2012, 12:07 AM
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#16
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
You are amazing, Courtney. Many blessings to you and your family.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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03-23-2012, 08:32 AM
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#17
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Senior Member
Join Date: Jan 2010
Posts: 170
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
Prayers and positive thoughts are always with you both. I am so glad you two are enjoying the best of life. I have found it makes the bad times easier to endure.
I know you two will do what is best for you and that we all have to make our own way.
Stay strong and in love,
Emelie
__________________
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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03-23-2012, 04:36 PM
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#18
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
NEW UPDATE FROM COURTNEY AND JAY:
Decisions Decisions
I’m going to have to make some hard decisions this weekend: treatments about chemo, treatments about home care, and general treatment decisions. These aren’t easy choices.
Because I know the price that I’ll have to pay for going on a toxic chemo again. But I know the reward I will see if I go back on chemo. Hopefully my chest wall disease will disappear. But with cancer there are no guarantees. [Jay notes: We did meet with the UCSF 2nd opinion expert, and working with Dr. Smith, we have an option. Courtney will be starting a low-dose oral chemotherapy on Monday to attempt to keep the disease stable, while also maintaining our quality of life.]
In the meantime, we are still trying to jump the hurdle of me walking. I am making some progress, but still am wheelchair bound, much to my disappointment. I have learned a lot about myself going through this experience of being partially paralyzed. I am grateful for the people in my life who do the simple things for me, like Jay, who has breakfast ready every morning, like my Mom who’s been spending time with us and helping with unpleasant tasks like going to the bathroom and doing laundry among other things.
In other more hopeful news, Jay began his new job last week [sold his company!], and is already in the swing of things. Although he does miss his morning sleep, a luxury previously offered by being his own boss.
That’s all for now. Tune in next week for a treatment update.
[Jay notes: The past few days brought some great dinners at home w/ friends, countless phone calls (it’s impossible to talk to everyone who calls, so please understand), and quality time together. This weekend, we will be spending more time with Courtney's family , a leisurely Sat in San Francisco, and really soaking life up...]
__________________
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
15 Years NED
I think I just might hang around awhile....
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03-24-2012, 11:49 AM
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#19
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Senior Member
Join Date: Jun 2011
Posts: 107
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
Courtney, so glad to hear that there is an option for you to go on. Hoping the pill keeps things stable and gives your body a chance to get stronger and that you will be able to get up and walk. I'm glad you are having the opportunity to spend time with friends and family and soak up life. We should all be doing just that. Your spirit for life is so encouraging to me. I hope to read more of your updates and to hear about continued progress! I pray for you! And for Jay. Our dear husbands go through so much as they walk with us on this journey. Hugs!
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03-24-2012, 12:43 PM
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#20
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Re: COURTNEY'S LATEST UPDATE. When the going gets tough....the tough keep going!
Every step, every day I am praying for you. I hope
the treatment helps and at the same time you can
heal and enjoy life with Jay.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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