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Old 05-27-2013, 06:50 AM   #21
karen z
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Re: Christine has passed away

Dear Danielle and Debra,
Your mom was a one of a kind individual who I shall miss very much (as I do your dad). I cherish memories I have of Christine (most of these occurred with your dad nearby) as well as talks we had and events we shared. Your mom was intelligent, very funny and compassionate. My heart goes out to you at this time. The legacy your parents left, not only in terms of this site, but of two wonderful, caring and talented daughters will never be forgotten and always inspire us to try and do what we can to help others through their suffering and pain.
Love,
K
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Old 05-27-2013, 10:26 AM   #22
lkc Gumby
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Re: Christine has passed away

Dear Danielle and Debra,
I am so sorry for the loss if your dear mother. I have always marveled at her great strength and dedication to all Her2 sisters.
Your mom and dad were a huge testimony of strength, courage and boundless love. I feel certain that they are together in God's grace and proud of their daughters and legacy of their work.
God Bless you both
__________________
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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Old 05-27-2013, 10:32 AM   #23
BonnieR
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Re: Christine has passed away

There is no higher purpose than to make a difference in this world. And both of your parents did exactly that. They touched countless lives and it will continue to be payed forward.
It's comforting to think of them united again!
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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Old 05-27-2013, 11:32 AM   #24
3twins
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Re: Christine has passed away

Danielle & Debra,
I am so sorry for your loss. Your mom and dad have left such an incredible legacy of love and compassion. My thoughts and prayers are with you.
3twins
__________________
DX 5/17/10 IDC & DCIS
BMX 6/3/10-Stage 1, 0/2 nodes
ER+/PR-, Her2+
Chemo 7/8/10-10/21/10
FEC X 3, T X 3, Herceptin weekly for 9wks
Start Arimidex for 5 yrs-11/22/10
12/16/10 NED!!!!!
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Old 05-27-2013, 03:34 PM   #25
norkdo
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Re: Christine has passed away

omg.
Danielle, there are no words right now.
So sorry.
I'm in shock.
You're amazing.
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 05-28-2013, 09:45 AM   #26
Catherine
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Re: Christine has passed away

Dear Danielle and Debra,

I am so sorry for the loss of your dear mother. May you find strength knowing your parents are now together. May you find strength from experiencing their great love for you and their fellow man. The legacy they created was a support line to me and I will always appreciate them and remember them for what they gave us all. I am sure they appreciated all the love and support that you gave them over the years. And they were probably very proud of the fine people you are.
Hang on to each to other and know that we are still a part of your extended family. Thanks for all your family has done for the Her2 family.

Hugs and Love, Catherine
__________________
Catherine


Found my own lump in the shower
April 06 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 3.2cm
Chemo first: AC/Taxol over 16 weeks
Bilateral Mast Sep 06, 3 of 14 lymph nodes pos, 33 rads
1 year of Herceptin completed Dec 07
11 years NED since April 2017
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Old 05-28-2013, 11:41 AM   #27
Andrea Barnett Budin
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Re: Christine has passed away

Dearest Danielle and Debra,

First I must thank you for the beautiful and extraordinarily eloquent post to us, even as you are grieving. I suppose we are all the keepers of the flame. Most especially the two of you!

I am deeply saddened that Christine has passed on, but I also know she still is. Death is surely not the end of our story. And that brings me some solace.

What would we all have done without this amazing site that was dreamed of and created with immense love and caring. No easy accomplishment indeed!

I had the good fortune of speaking with Joe at length many times years ago. What a fellow! He oversaw this site as the Webmaster meticulously and daily. Like the captain of a ship, he was all hands on. What a comfort that was to me.

I also spoke with your Mom and enjoyed our conversation all these many years later. We discussed amino acids and supplements and really got into it! Such a remarkable lady, so full of knowledge and wisdom, Christine was clearly in touch with her body, as we talked in depth about her experience and mine. She was a woman of great grace and courage! Proud to have known her!

The special mix of women who have gravitated to this incredible site -- because of Christine and Joe -- offer unique skills, a wealth of information and an uncommonly giving, sharing Spirit. We are Family. Sisters, and Brothers. Your parents have enriched the lives of so many (many more than those who post, many more than you can possibly imagine). They were gifts to us all. They have blessed immeasurable lives!

"NEVER BELIEVE THAT A FEW CARING PEOPLE CAN'T CHANGE THE WORLD. FOR INDEED, IT'S THE ONLY THING THAT EVER HAS." Margaret Mead.

What magnificent Souls your parents are, Dani and Deb! And still are! They are in another Realm, and they will no doubt continue to watch over us. I feel honored to have known them. I'm but one of the many recipients of their good works. Their involvement had no end, from San Antonio to wherever they felt they could contribute across the country...

Please accept my heartfelt condolences at this time. No doubt each of you reflect all they had to offer this world. I know how very much they loved you.

May I add my love at this difficult time, along with heartfelt hugs,

Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 05-28-2013, 01:02 PM   #28
DonnaD
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Re: Christine has passed away

Danielle and Debra,
Words are hard to come by right now. I do not check in on the site as much as I should. But the last few days something was drawing me here. I am so sorry to hear of your Mom's passing.

I had the privilege of meeting and working with your parents several times at ASCO and San Antonio. They were amazing people. They have touched so many lives because of their dream of helping Her2+ breast cancer survivors. I will always remember the love they shared. I rejoice in the fact your Dad was waiting for your Mom along with so many others like my dear friend Sheila, Chris, Mary Ann, Brenda and so many others.

My heart is so heavy. Please know you are both in my thoughts and prayers. Their legacy will continue now through us.
Donna
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Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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Old 05-28-2013, 04:58 PM   #29
Ceesun
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Re: Christine has passed away

Danielle and Deb, Thank you for sharing your parents with us all these years. I am sure it wasn't always the easy thing to do, but as you can tell we all needed them, admired them, and loved them. For me, although I never had the chance to meet them, they were role models. Reading their posts, hearing Christine's story, was a true education...always gave me the feeling to push on, go forward, make the best of what I could, and gain a bit of power thru knowledge. Do take good care of yourselves and again, thank you for allowing them to take care of us. "Ceesun" Cathy
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Old 05-28-2013, 08:09 PM   #30
KsGal
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Re: Christine has passed away

I am so, so sorry for your loss. As everyone has said, your parents made a HUGE difference in our little corner of the world, and this website is an amazing gift that they shared with us all. There are no words to describe how grateful I am for this website, and for your parents who helped lift me up when I was down and inspired me, and many others, to keep on going. Prayers for peace and comfort during this most difficult time.
Jody from Kansas
__________________
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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Old 05-29-2013, 01:27 PM   #31
roz123
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Re: Christine has passed away

my deepest condolences to your family for your loss

this site has been such a comfort and source of information for all of us - I am fairly new but when I look at the diagnosis dates for some of the members and how long they have stuck around it shows how truly special all the members are and how your parents brought together all these strong women from all over the world - what a legacy

rest in peace Christine
__________________
diagnosed aug/11
right breast IDC 2.2 cm LVI
neoadjuvant fecx3, tax and her x3
surgery -pCR 0/2 nodes
25 rads
herceptin x18
tamox
prophy bi-msx with TE's oct 15/12
LD flap reconstruction (PM me if you want the details)
zoladex shots monthly until SOFT studies come out
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Old 05-29-2013, 06:01 PM   #32
jacqueline1102
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Re: Christine has passed away

I am so very sorry to hear this about your mother. I did not have the opportunity to meet your parents. From what I have read, you truly were blessed to have such an amazing mother (and father). My thoughts are with you and all of your family.

Take good care,

Jackie
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Rads
8/1/12 Started Perjeta with the Herceptin
10/12 Scans said NED for first time
Scans every 6 months
5/15 Began UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta. Staying on Herceptin. Still NEAD.
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Old 05-30-2013, 08:40 AM   #33
Gerri
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Re: Christine has passed away

Adding my thankfulness for this site that your wonderful parents saw a need for and took action to make it happen. The lives they touched are countless and far reaching. My deepest sympathies to your family in this time of great loss.

With love and graditude,
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
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Old 05-30-2013, 09:25 AM   #34
jml
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Re: Christine has passed away

"A Luminous light remains where a Beautiful Soul has passed." Antoine Boveau

Danielle & Debra~

I'm so sorry for the loss of your wonderful Mom. I never had the pleasure of meeting her, or your dad, but felt like I was able to know them more intimately through you.

I found you all and this Her2 Family 6 months after I was diagnosed - that was 11 years ago. And you all have been my lifeline, support, guidance and on many occaissions my laughline too. I can not speculate what this journey would have been like without all of you lighting the way.
Your family and the legacy of this site has made a profound impact on my life & the lives of so many, not just those of us fighting this disease, but on an even broader scale those out there from family members to Big Pharma that fight along side of us to bring this disease to an absolute halt.

Sending you my prayers and may your hearts heal quickly, finding peace in knowing your parents are together again, surrounded & welcomed by our sisters who've gone before us.

Much love,

Jessica
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Old 05-30-2013, 03:52 PM   #35
Cat
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Re: Christine has passed away

I did not know your Mom and Dad but I am very grateful to them for this site and the things I have learned, laughed at, been saddend by and been joyous about. I hope you are at peace and sending you prayers.
Cathy
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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Old 05-31-2013, 04:52 AM   #36
Mtngrl
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Re: Christine has passed away

Dear Danielle and Debra,

I'm so sorry for your loss. You have my deepest sympathy.

I never met your parents, but they must have been wonderful, because they created and sustained this site. People here meet others who know what they're going through. They make friends. They realize they are not alone, and that they are part of a community. I shall always be grateful to your family for this wonderful labor of love.

Everyone dies, but not everyone leaves behind a marvelous work like this community. It touches people all over the world, and it offers hope, encouragement, priceless information and advice, and the strength to carry on.

It is a priceless gift.
__________________
Amy
_____________________________
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 05-31-2013, 05:47 AM   #37
sarah
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Re: Christine has passed away

Dearest Danielle and Debra,
I am so very sorry to hear this news.
Joe and Christine created a wonderful community of caring friends that have made this journey so much easier and I cannot imagine going through it without my HER2 family.
Joe's death was devastating and now Christine, it is so very sad.
My heart goes out to you and your family. Your parents are exceptional people who will always be remembered with great affection. Not many people can say that they not only changed the world but made it better but you can say that about your parents.
Of course we will donate to the site as is their wish and I hope that you and others will continue with it. Certainly it is an important part of our lives and has helped us all so much.
Hugs and love
Sarah
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Old 05-31-2013, 04:28 PM   #38
Patb
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Re: Christine has passed away

So very sorry for your loss. I was lost when I was
diagnosed with Her2 and then found when Christine
and your father had this wonderful group with all
this knowledge and such great women and men.
God bless them and I will keep them in my heart.
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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Old 05-31-2013, 06:44 PM   #39
Bill
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Re: Christine has passed away

Please accept my condolences. I'm so sorry for your loss. As you already know, you were blessed with two wonderful parents. I never had the pleasure to meet them in person, but your Dad and I would swap PMs from time to time. My heart goes out to you.
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Old 06-04-2013, 08:23 PM   #40
lexigirl
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Re: Christine has passed away

Please accept my sincere condolences. Prayers for peace and comfort during this difficult time.

Thank you Christine for all you have given.

Hugs and Prayers,
Lexi
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