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01-25-2012, 05:28 PM
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#21
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Rally our prayers...Courtney needs us
Today's update on Courtney's caringbridge journal
Wednesday, January 25, 2012 1:25 AM, PST
Progress
Not much news to report – we are waiting on some test results from Courtney’s cerebral spinal fluid. One working theory is that she has an infection in her spinal fluid which is causing the neurological issues.
Courtney is hanging on strong. She's winning the hearts of everyone in the ICU, and has the best medical team in the world.
I want to relate an anecdote of how Courtney is fighting back. She hasn’t been very verbally responsive – she doesn’t reply to many questions, although she gives you the occasional terse “yeah.”
And so, the nurse asks Courtney: "Courtney, did you swallow your pill?" No reply from Courtney. Not even acknowledgement that a person is in the room.
Again, the nurse asks much louder "COURTNEY, DID you SWALLOW your PILL?"
To whit, my wife yells back "WHY ARE YOU YELLING AT ME?!?!?” I cried laughing. The nurse just smiled.
Today was a special and moving day with immediate family. I’m just wrapping some special evening hours – I offered to read Courtney all of the emails and CaringBridge posts that have been pouring in. With her cute “yeah” of approval, and using Pandora on the iPhone to play some mellow piano jazz, I proceeded to read Courtney your messages… OK, I only made it through 30% of your messages… we paused a lot so I can confirm that she was enjoying the stories (which received several “yeahs”), but I pledge to continue reading them to her every evening.
Since we haven’t determined the exact cause of the problem, we take each day at a time.
__________________
Chris in Scotts Valley
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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01-25-2012, 05:34 PM
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#22
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: Rally our prayers...Courtney needs us
Prayers from Florida, too--just figured out how to post on Caringbridge...thanks for keeping us informed. Ceesun
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01-26-2012, 05:05 AM
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#23
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Rally our prayers...Courtney needs us
From Jay (there may be some clarity, hopefully today)....
THURSDAY, JANUARY 26, 2012 2:54 AM, PST
Here’s short update to the Courtney-faithful.
We had a first wave of tests come back today showing no detectable cancer in her spinal fluid - so the leading theory is that she has an infection in the fluid that surrounds her brain. This remains very serious – there were no high fives or exclamation mark emails being sent out today, just some relief that we think we know what might be wrong. We began treating it with aggressive antibiotics within hours of Courtney admission to the hospital on Monday. The full medical team agrees that we need to see improvement in the coming days, so please, please keep her in your thoughts. As you go about your day today, please appreciate that today is a precious gift... only recently have I begun to appreciate each minute (literally) when things are going well.
Courtney had more periods of alertness today, including some more sweet time with immediate family, several soft and unbelievably tender ‘I love yous’, and was comfortably hugging several pillows as I left UCSF at 12:45 AM.
As a special note, our friend Will writes the following:
"A few of our friends are working on some projects to support Courtney. We could use some help getting the word out." Here's a site you can visit to see what they recommend: http://sites.google.com/site/4cl2012/
Best
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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01-26-2012, 05:19 AM
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#24
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Rally our prayers...Courtney needs us
Just read caringbridge update.
Thank the Lord that Courtney HAS NOT got mets in CSF! She remain very poorly with the doctors still thinking she has an infection in the fluid surrounding her brain.
We need to continue our prayers for Courtney and Jay and hope they will soon be answered.
Ellie
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01-26-2012, 05:44 AM
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#25
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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: Rally our prayers...Courtney needs us
Rally Courtney! Rally! Jay's update on CaringBridge was a mixed bag, happy news that there was no cancer in Courtney's spinal fluid, but still very concerned because of the presumed infection in the fluid around her brain. Just as Jay requested, that we go about our day lifting Courtney up, I spent yesterday remembering so many in our Her2 group as I performed the day's many tasks. It seems we have so many facing crossroads in their treatment. Come on, God, show up in a BIG way for our Her2 gals this week!
__________________
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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01-26-2012, 05:54 PM
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#26
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Member
Join Date: Dec 2010
Posts: 17
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Re: Rally our prayers...Courtney needs us
You are in my thought's and prayer's..
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01-26-2012, 09:16 PM
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#27
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Rally our prayers...Courtney needs us
Courtney, Thank goodness no cancer. The antibiotics should take care of the rest and you'll be out of the ICU and home soon. Thinking healing thoughts for your recovery. Joan
__________________
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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01-27-2012, 02:27 AM
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#28
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: Rally our prayers...Courtney needs us
So good that there is no cancer, but so scary that this infection is so bad. Certainly adding my prayers and thoughts and positive energy to all of yours...
__________________
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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