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11-06-2013, 11:37 AM
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#1
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Senior Member
Join Date: Sep 2010
Location: Shelby, N.C.
Posts: 114
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Little Pink Houses
I wanted to share an experience we had last week. Every year I am required to take classes to maintain my license as an optician. We have always tried to head to the coast for a vacation at the same time since my employer reimburses travel expenses. Well this year it just wasnt going to happen due to mounting medical bills. I had been made aware, thanks to one of our own here, Paula Oliver of an organization called Little Pink Houses of Hope. http://www.littlepinkhousesofhope.org/index.html
Well after filling out an application we were contacted early in October to attend a retreat in North Myrtle Beach the end of the month. Isnt it amazing how our God works, Barb was pretty disappointed in not being able to go as we usually do but He had a better way. I would encourage all who are able to look into this free opportunity. We had a fantastic time with four other families, one drove all the way from Texas with their two children. This organization is amazing their whole goal is to give families an opportunity to get away and enjoy time together and the only expense is travel to get there. We are looking forward to supporting this any way we can through prayer and volunteering and referals.
__________________
Diag. Aug. 2010
ER- PR- Her-2 +++ Stage IV
Mets to T 6th Vertabrae
Radiation to spine
10/23/10StartNavelbine
11/19/10 Port installed
11/22/10 Started 2nd cycle
1/10/11 Finished 2nd cycle
1/24/11 Herceptin Only
3/7/11 progression, start Taxol/Herceptin
4/18/11 Skin mets appear increase treatments to weekly
rash spreads to right breast
7/5/11 enroll in TDM-1 study
7/29/11 randomly assigned Tykerb drop out of trial and start Tykerb /Herceptin no Xeloda skin mets gone Tykerb working
1/31/12 Skin mets return add Xeloda
5/9/12 Stop Tykerb skin mets back
5/17/12 Return to Navelbine/Herceptin
6/26/12 start process for TDM-1 compassionate access
8/28/12 Start TDM-1
10/9/12 third TDM-1 no response yet
10/23/12 Start Haloven
1/17/12 Start Perjeta/ Herceptin/Taxotere
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11-07-2013, 12:23 AM
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#2
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: Little Pink Houses
I had heard of little pink houses of hope before, but I have never known anyone who actually went. I am so glad that you two got to go, and that you had such a good time, and right when you needed it!
__________________
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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11-26-2013, 06:40 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: Little Pink Houses
Yes, thank you for sharing!
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen
2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.
2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle
2011 - Still Herceptin only and NED
2011, June - STOPPED Herceptin and kicked up my heels!
2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.
2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine
2022 On Herceptin and NED continues - WOOT WOOT!
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11-26-2013, 06:47 PM
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#4
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Little Pink Houses
Wow, that is so nice! Thanks for sharing, and as always, letting us know how Barb is doing!
Happy Holidays,
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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11-27-2013, 05:26 AM
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#5
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Senior Member
Join Date: Jul 2011
Posts: 954
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Re: Little Pink Houses
I'm so glad you and Barb got to go, Mike! How's Barb feeling/doing these days? What was your favorite part of the retreat? I loved it all but especially enjoyed kayaking, hydrobiking, and paddleboarding and the close times connecting with other families and volunteers.
The free retreats sure are like a dream come true. Our family was selected to participate last September at the Oak Island N.C. retreat and it was absolutely fabulous. It was a lovely bonus too to meet up with you and Barb on that trip.
Last week I had an absolutely fantastic time volunteering at the New Symrna Beach, Fl retreat: what a joy to be part of showering couples and families battling breast cancer with love and tons of fun opportunities!. A link to a daily blog sharing activities/photos during different retreats is here: http://www.littlepink.org/category/lp-retreat-blog/
Last year Key West and the Virgin Islands among others were destinations added to a growing list of vacation spots with beautiful donated beach homes throughout the country and this year there are going to be more new areas opening up too. I love the heart of this organization and am very happy to be part of it.
Applications to participate or volunteer (both super fun) will open up again in 2014 so anyone interested, I highly recommend checking back to the LPHOH site via the link Mike shared and apply when that opens up again early in the year. They are working on the site so some of the links are temporarily out of commission.
Have a great day! 
Paula
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