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Old 12-08-2014, 08:49 PM   #1
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The beginnings of HER2Support

http://copingmag.com/cwc/index.php/article/her2support/
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Old 12-11-2014, 01:23 PM   #2
Mtngrl
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Re: The beginnings of HER2Support

Good to know! Thank you.
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4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 07-24-2015, 10:35 PM   #3
sarah
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Re: The beginnings of HER2Support

We have a lot to be thankful for Joe and Christine's vision and dedication. We will never forget them and how much what they created has helped us all. They are angels in the many meanings of the word. Their work continues and I hope always will since it is so important. Their family can be very proud of them, they have created a unique and vital support group, full of great information, friendship and support.
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Old 02-02-2016, 01:05 PM   #4
Jackie07
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Re: The beginnings of HER2Support

The link has changed. Found it after doing a search on the site. http://copingmag.com/cwc/index.php/s...es/her2support
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Old 09-25-2017, 04:58 AM   #5
sarah
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Re: The beginnings of HER2Support

I posted before how grateful I am to Joe and Christine and their family for the existence of this site.
I would like to say to those who are new, there was so little information about HER2 and most of it was frightening and negative and here was a place with positive and supportive information and support. They were there when there was nowhere to turn for help. I cannot emphasize the importance of what they created. Never take it for granted, it is special.
I hope everyone who joins will read about its history and what it took and still takes to keep it alive.
Thank you to everyone who keeps this wonderful site on line for those of us who would be lost without you.
love Sarah
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Old 09-26-2017, 06:55 AM   #6
Donna H
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Re: The beginnings of HER2Support

I am forever grateful to the founders of this site, all the people who post and the silent prayers and well wishes from those who don't, and especially grateful to those who went thru early treatment and those who continue to participate in clinical trials.

Thank you to you all.
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