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

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Old 12-11-2014, 01:23 PM   #2
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Location: Denver, CO
Posts: 1,427
Re: The beginnings of HER2Support

Good to know! Thank you.
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
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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
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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

Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
GI - > yogurt
hysterectomy/oophorectomy 011410
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 groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.

Advocacy is a passion .. not a pastime - Joe
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Old 09-25-2017, 04:58 AM   #5
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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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Old 03-19-2018, 12:23 PM   #7
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Re: The beginnings of HER2Support

I would like to reiterate what Sarah said. Just recently an oncologist was shocked to find out that I had herceptin in 2005. It was just brought into Canada that year and I remember women driving to the US and paying $50,000 a year to get treatments. I had asked to be tested as it wasn't a standard test at that time. Today many more women are being identified and treated and are finding this wonderful resource. When this site started and we would go on the internet to gather information I remember the odds for me as a stage 3C her2+ breast cancer patient were around 10% that I would live 5 years. This site offered us information, hope and the awareness that these numbers were no longer correct. So many wonderful, intelligent, resourceful and brave women have and continue to support and educate those of us lucky enough to find this site. We truly are blessed that Christine and Joe recognized the need and had the drive to provide us all with this site. As the story of cancer has evolved and new treatments are discovered this site is also expanding and continues on as a legacy to Christine, Joe and their family.

Thank you


Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18

Last edited by Cathya; 04-26-2018 at 09:03 AM..
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Old 09-05-2018, 04:44 PM   #8
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Re: The beginnings of HER2Support

I personally spoke to Joe and Christine for a paper I was writing around 2008. I flew out to California and their family were amazing hosts. As background, some time in the 1990’s when HER2 was in its infancy, Christine’s breast cancer had spread to her lungs and brain. After the treatment failed, Christine had done her research and found out about herceptin. She insisted that her doctors test her for Her2. It turned out positive, she got herceptin, and her cancer went into remission. She told me how the website started:

“I sat down at the end of my bed and said to myself, ‘I’m completely well. This was so terrible and I had nobody to talk about it. I’m a health educator. I want other people to enjoy my wellness. How am I going to do that on a large scale?’ During my (breast cancer) search, I had looked for information like crazy but only got dribs and drabs and found most of it not helpful. I asked Joe to construct a worldwide web site for me so I could put down everything I’ve done for myself. I need to tell them, ‘You won’t die.’ Everything I’ve done I’ll put on my web site. Maybe they too can survive . . . Women have so many fears—fear of MRI, fear of chemo . . . So they can survive better and get through it all . . . I wanted a worldwide outreach— not just U.S., but the whole world. I wanted all the resources in one place and more. I did not want to harbor them all to myself. I get survival.”

Her vision for this website still shines through today.

Dx Nov 2003 HER2+++, ER+, PR+
1.7 cm. left breast, Grade 3, Two nodes out of six, stage IIA
Mastectomy right side
Lumpectomy left side
4 A/C, 4 Taxol plus 49 weeks herceptin
Radiation on left side
No tamoxifen or other hormonal drugs
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Old 09-05-2018, 04:54 PM   #9
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Re: The beginnings of HER2Support

As a follow on to my previous post, here Christine and Joe speak to their values and the mission of the Board.

Christine: "This is a no-nonsense board. It’s not to have a pity party. We’re not here to have a Snoopy dance. I think that’s appalling (on a board). Through our philosophy, we believe in:
 Education - Looking at resources
 Working together as a team − They will find their answer through our web site by a team effort.

Give them a lot of resources. Education is our primary objective. The best way to get through a disease is education, and we do that through our web site.

No one ever does not get a reply. We’re hanging in there to get help, but who should answer, but those that have been there . . .

There is no opportunity to say la, la, la. I say God helps those that help themselves. If there is a will, there’s a way. Kick the demon in the butt!!!"

Joe voiced a similar philosophy:
“The main mission of the web site is to educate women. Don’t rely on doctors. Doctors make bad decisions like people do. The only way to beat this is to become as smart as doctors and work with them . . . “

They were a very unique couple and were truly driven by the mission of empowering women (and men) to help each other with HER2 breast cancer. Doctors are a partner, not an expert.

Although Joe had other income, they spent immense amount of time keeping the board relevant and honing the culture. They were amazing people, did an amazing service to the HER2 Community, and I am personally appreciative of helping me in my time of need.

Dx Nov 2003 HER2+++, ER+, PR+
1.7 cm. left breast, Grade 3, Two nodes out of six, stage IIA
Mastectomy right side
Lumpectomy left side
4 A/C, 4 Taxol plus 49 weeks herceptin
Radiation on left side
No tamoxifen or other hormonal drugs
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Old 09-07-2020, 07:52 AM   #10
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Lightbulb Re: The beginnings of HER2Support

Can her2 positive cancer be cured ?
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Old 09-23-2020, 11:02 PM   #11
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Wink Re: The beginnings of HER2Support

Robert, some stage 4 patients are seeing very long remissions, even going off treatment. There are a few that I personally know, like myself. I do feel cured, being stage 4 since 2002. There is hope. Someone has to be that person able to join the club!
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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