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10-14-2012, 02:05 PM
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#1
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Senior Member
Join Date: May 2007
Posts: 236
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I'm helplessly Drowning in a Sea of Pink
That pretty much sums up how I feel this month. I feel so helpless as I stand by and watch this disease literally kill my Mom who has fought so hard for so long. I ask myself WHY....why MY Mom? Mom always wondered if she would have been able to get Herceptin BEFORE she had a reoccurance things might have ended up differently. I read statuses of other members here who are stage4 some were diagnosed b4 my Mom and some are even NED and although I don't begrudge any of you your health part of me wonders why (you) and not my Mom because she is just as deserving. People tell me I need to pray to God for strength which I think is a bunch of melarchy as he couldn't even give my Mom the strength to beat this terrible disease.
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10-14-2012, 02:53 PM
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#2
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: I'm helplessly Drowning in a Sea of Pink
Jen - Please don't lose faith. That is not how your mom has behaved during all the time I have known her on this board (7 or more years!).
She has been steadfast for others, even in their darkest hour. She has been steadfast for her family, and taken on huge responsibility for your grandparents, and your children.
Questioning is a real part of the grief process. Anger and other emotions are normal. No one has wished ill to Sheila.
The research is turning up more and more subtle, but very important, differences in our disease. HER2 has many subcategories now. I am a lucky one so far, and I do not know why my disease was treatable.
Listen to your mother as she is extremely wise. She knows how to handle and get through tough times; her love is pure and strong. Try to find that place.
Loving hugs to you, Jen.
__________________
"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.
MY STORY SO FAR ~~~~
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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10-14-2012, 02:59 PM
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#3
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Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
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Re: I'm helplessly Drowning in a Sea of Pink
Oh Jen - I am so sorry you are going through this - it truly breaks my heat and I don't know if I can offer any wise words.
At times when I think "why me?" I now counter with "why not me?" there is no rhyme nor reason.
I'd like to say something about your Mum's strength through - wow, I wish to be so strong, to live with stage 4 disease for as long as she has, I understand how tired she must be, she has been going at this for such a long time. Only last week, I wondered if I could go on but I have three young children, one yet to start school and realised I just have to. To keep believing in miracles, to live now and not wonder about the what ifs.
This disease is indiscriminate. There are many of us now who get herceptin who still get Stage4 disease - we all want a cure, we all want a miracle. I too hate the Pink, the celebration of "moving on" when so many of us a "muddling through"
Jen, if praying helps, Pray. It is stillness that works for me, connecting with my own intuition, my inner strength. I know you will find a way through. Your Mum is so very much in our thoughts here and in mine. Rest may give your Mum the strength that she needs to keep going but if it is a time of transition for her, rest may give her some peace too.
Sending you a load of love.
__________________
Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis
June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions
Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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10-14-2012, 03:17 PM
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#4
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Senior Member
Join Date: Sep 2010
Location: Shelby, N.C.
Posts: 114
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Re: I'm helplessly Drowning in a Sea of Pink
Jen
God does'nt do melarchy thats the devils specialty and you can bet if your doubting Gods wisdom thats the devil talking. Dont listen to him hes a loser. I know its hard to except sometimes but please know that whatever you or your mother go through in this life it doesnt catch God by surprise. He has a plan for all of us. Weve been praying for you guys hang in there.
__________________
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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10-14-2012, 03:31 PM
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#5
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Senior Member
Join Date: May 2007
Posts: 236
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Re: I'm helplessly Drowning in a Sea of Pink
I have prayed....it isn't working. I feel like God is punishing me by making my Mom suffer. I wish it were me instead of my Mom.
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10-14-2012, 03:38 PM
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#6
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: I'm helplessly Drowning in a Sea of Pink
Dearest Jen,
I hear your anger and who can fault you? As Steph mentions anger is part of the process...just last week I posted about Brenda (another sister of ours who lost her brave and hard fight) with this beast. I was very angry also.
Your mother was one of the first women who reached out to me when I first joined the site. She was encouraging me to fight for herceptin/and chemo (along with Becky) after I had been told no by all 3 dr. in NY and 2 NJ ...She shared her story and her early dx. and it helped me to keep pushing hard as many were against herceptin back in 2005/06...I finally went to Dr. Slamon out in Calif as my last and final opinion. I also met your Mom in person finally out in SDBCS and she and I shopped for comfortable shoes as my feet was so sore from the chemo/herceptin. Why am I telling you this you may wonder...I wanted to share with you that I am angry also to hear that your Mom has fought so hard and is not rebounding back. It is so hard to accept but you do know how special and so very strong your Mother is and always was. I was just amazed at her strength and humor. Her love of you,your daughter and the rest of the family. Who can fault you for your anger today.
Your Mom has been so very strong for so very long.
I am still keeping her in my prayers and yes I am praying for a miracle.....please know my heart aches for you and your family.
Kindest Regards,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
Last edited by Jean; 10-14-2012 at 03:42 PM..
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10-14-2012, 04:39 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: I'm helplessly Drowning in a Sea of Pink
Jen,
My heart breaks that you are in such pain. Words can't begin to make any of this right, or fair. Your moms strength and passion for life, and her love and support have made such a huge difference to so many people as you witness here in the outpouring of emotion from those here whether we met in person or not.
Many prayers are circling the world for you mom as well as for you. Try to rest in that, and know that God is big enough to handle your anger. However you feel is ok.
Much love
Chris
__________________
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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10-14-2012, 05:08 PM
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#8
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: I'm helplessly Drowning in a Sea of Pink
Dear Jen,
I'm so sorry. As others have said, you have every right to be angry. It isn't fair. Cancer sucks. This is really, really hard to take.
I don't think God punishes people. I don't think cancer is a punishment for anything. It's wily. It's persistent. It's relentless. But it really doesn't know what it's doing. Some cells want to be immortal. They're like Icarus flying too close to the sun. They just don't realize their "success" means failure for their host.
I wish I could hug you and your mom and say "there, there." I know what you mean about wishing it were you instead of her. That's how you know you really love her. You care more about her well being than your own.
It's terrible to be helpless and powerless. It's terrible to feel abandoned by God. But just as I don't believe God punishes people, I don't think God ever leaves us to our own devices. As Paul said, nothing can separate us from the love of God. Nothing.
I wish I could make it all better for you, and for your mom.
__________________
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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10-14-2012, 06:39 PM
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#9
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Senior Member
Join Date: Jan 2011
Posts: 36
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Re: I'm helplessly Drowning in a Sea of Pink
Dear Jen, I understand your anguish all to well. I lost my mother on Christmas day 2008 and then my 19 year old son 6 mos later. I've been stage 4 since April 2004 and wondered why God would take my son and not me. The most comforting words offered to me so far were that "that was his journey God had for him - not yours". God does have a plan for all of us- trust Him. Try not to be angry at Him...you will need Him to get through this. This is your mothers journey...she was a God send to me so many times. My heart goes out to you. I will pray for you and your family.
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10-14-2012, 06:40 PM
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#10
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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: I'm helplessly Drowning in a Sea of Pink
Jen,
What you are feeling is completely just. Damn it all, YOUR mother is an exceptionally amazing and good person. Why exactly!
The answer is that I do not know why. Your mother is so loved here. How can we lose her? Knowing your tough mom, maybe we won't! Regardless, God has a plan and truthfully heaven will rejoice when (and if) you mother arrives soon. Death is an absolute, whether sooner or later it comes to us all. This is a law of the universe that is unchangeable. For the person who passes into the next life it is not at all terrible, but rather lovely and so beautiful. It is us here on this earth who face the terrible consequence of their loss. A void in our lives is created and no one fills it as they did.
I can offer nothing to ease your pain, except to say that sometimes the anticipation of the forthcoming event is worse than the actual event. When your mother suffers no more you will find your peace. Life will go on as your mom would expect and want. Bless you for your honesty and courage. Helping someone pass to their next existence is tough, but you can do it. How do I know? You are made of tough stuff like your mom.
__________________
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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10-15-2012, 09:56 AM
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#11
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: I'm helplessly Drowning in a Sea of Pink
Dear Jen,
So sorry you are going through so many emotions and thoughts at once...the only thing that has ever given me comfort was the realization that for some people in our lives, (parents, spouses, children) it would never be a good time to say good-bye. Even if my mom had lived to be 100, I would not have wanted to let her go. She passed at 57 (18 years ago) and it took me many years to realize that she lived inside of me and her grandkids. There are no words to ease your pain, you know that your mom is an inspiration to all, and because of her strength it's even harder (I imagine) to let go. Keep breathing and keep writing. We are all here for you.
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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10-15-2012, 02:59 PM
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#12
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: I'm helplessly Drowning in a Sea of Pink
I'm so sorry, Jen. Sending a gentle hug.
Barb A.
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10-15-2012, 03:04 PM
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#13
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Senior Member
Join Date: Aug 2011
Posts: 271
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Re: I'm helplessly Drowning in a Sea of Pink
You mom is suffering and daughters need their mothers. Breast cancer is terrible...and the pink stuff all over the place makes me nuts too. I sent an envelope to you with a letter...I hope you recieved it. It is a special prayer that I feel reveals your Mom's character ...even though I just chatted to her a couple of times here on the board.
Jen, go ahead and be mad at whomever you want to right now...your entitled.
__________________
DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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10-15-2012, 07:35 PM
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#14
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Senior Member
Join Date: May 2007
Posts: 236
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Re: I'm helplessly Drowning in a Sea of Pink
Thank you Jill for your letter and special prayer and thank you to everyone who has reached out to me at this difficult time I very much appreciate it.
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10-16-2012, 01:39 AM
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#15
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: I'm helplessly Drowning in a Sea of Pink
Hi Jen, I remember hating the PINK also. When I first saw my surg. onc. He gave me a small gray box with a pretty pink ribbon on it and I thought how sweet. I was feeling a slight better when I got into the car and opened it and it was a dainty silver bracelet of hearts and Pink bows I through it across the van and yelled who the heck wants that. I was so up set. Then I started to get a flood of pink the more people knew. Scarfs, blankets, t-shirts, necklaces, mugs, anything you could imagine with a pink bow on it. I thought why would anyone want to be the next poster girl for breast cancer? I struggled for a long time until I met your mother (Sheila, What a God send to me!). At the time your Mom was suffering with her radiation txs and I actually thought hmm, I could help her and I started pm her and chatted many times. She said she would like to try the vigilon gel pads I had and so I sent them to her. She sent a return package to me and the first thing I pulled out was a big black bumper sticker which said in large PINK letters was CANCER SUCKS! I started to laugh and cry out loud and I started to get it, That is what I wanted, everyone to know that CANCER SUCKS. The whole time it felt like I was getting gifts for something so awful I wanted them to where it! The truth is that dreaded pink is utimatlly saving lives. its not just one company but a great many. A woman in our city used that pink ribbon to get donations for her treatment she couldn't afford and it saved her life. That sea of pink really shows just how big this awful deseas is. Needless to say I thought I was the one that thought she was helping some one, It was really your mom who helped me! After that I was able to focus on more important things God, life, my husband family kids, helping others on this site. Hope and prayers spring eternal. Peace Jen.
Your friend,
Nancy
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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10-16-2012, 11:46 AM
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#16
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Senior Member
Join Date: May 2007
Posts: 236
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Re: I'm helplessly Drowning in a Sea of Pink
Thank you for sharing that story with me Nancy Mom has been always been there for others no matter what she was going through. Cancer does SUCK.
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