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Annie View Drop Down
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    Posted: Aug 03 2013 at 1:35pm


    Dear TNBC Husband,   I am so sorry for the loss of your wife. I am in admiration of your Faith and your definition of God's reality. Yes, it is so true, His reality and ours, His is best. I commend you for your words and care in regards to your wife.   They show a true and sincere image of what a husband should be and from what you say, You yourself are truly remarkable. God Bless...Annie
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nancykind Quote  Post ReplyReply Direct Link To This Post Posted: Aug 03 2013 at 1:00pm
my heartfelt condolences for your loss.  thank you more than i can say for sharing the journey you both have had.   sending you love and peace.
Lg lump never visible on any films but found 9mm. Lump 1/25/12, DX 1/31@50yrs IIIC/TN/DCIS/INV, Margins Unclr, Ki67 40%,Gr2. MX L 2/24. 3.1cm total. 11/17nodes. AC/T 2xWk,33rads. 12/12 MX R. 9/13 NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 03 2013 at 11:43am
Matt,

I am so sorry for your wife's passing. Your love for her shines through. May you be comforted to know that she is no longer suffering. Every loss is tragic until we can find a cure for this horrible disease.

There is a Tribute section of you'd like to start a thread in memory of your wife.

Hugs,
Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 03 2013 at 12:17am
Dear Matt,

Thank you for your beautiful, beautiful post and thank you, too, for your lovely email that I shall cherish. 

You were both blessed to have each other.

my heart has been, is and shall be with you,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Aug 03 2013 at 12:08am
Matt,

The most sincere and deep sympathy to you.
Trying to speak the words of the heart......love and support and caring......to you.

The beautiful relatonship you have had with your wife will continue.........just in a different way.

PC Stark, Rest healed in Eternal Love and Peace.......
                 and may your loving and caring spirit always surround and support Matt.



Grateful for today.............Judy
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Lee21 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2013 at 3:02pm
Dear Matt,
I am so sorry to hear of your wife's passing and the deep pain and sense of loss you must be feeling. Your beautiful words brought tears to my eyes and I believe that your wife is healed where she is now.  May you find the strength to see the beauty in each day in the coming weeks.
Lee
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2013 at 2:21pm
Matt,
I saw your update post the other day, I did not respond as I felt your pain & your heart so deeply. I knew if I started to write I would cry. I am so sorry for your loss, I pray that your faith and the love you both shared keeps your heart warm in the aftermath of this monsterous taker of life and vitality.

I truely feel also that she is healed, and also with you.
My sympathies,
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2013 at 1:58pm
Matt,
I am so very, very sorry for your devastating loss.  I will pray for your peace and healing in the days, weeks, and months ahead.  I am sure your presence and support brought comfort to your wife as she faced the end of her life.
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tnbc_husband Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2013 at 1:21pm
Early this morning my beloved wife, PC Stark, went to be with God.  She fought so hard for the last 18 months but she never shed a tear except when the pain was more intense than anything she had ever felt.  When bad news arrived, I was the one in tears and she was the comforter.  At least I had the honor of caring for her these last few weeks when she was too weak to do the things she did for us and herself.  She never posted here or looked at anything on the internet because she didin't want to ever see anything that might be negative.  To the end her Faith never wavered. 
 
Since Monday night she has been non responsive.  But even in her weakened state she held on and fought as long as she could, waiting for her miracle.  I told her not long ago that I had no doubt that she would be healed and restored but that because God’s reality is beyond our comprehension perhaps it would be in his definition of our lifetime and not ours as we can understand it.  I know that she is with Him now and finally healed and restored from the effects of this horrible disease and the barbaric treatments that have so far been developed to combat it.
 
I am a better man and blessed for having known her.  She not only taught me how to love but how to be loved.  Our five years of marriage were all too short, yet enough to last a lifetime. 
 
Matt Stark


Edited by tnbc_husband - Aug 01 2013 at 5:44pm
Wife DX:12/11 age 55,IIIB, gr 3, 6x8cm+node, BRCA-, TX:DD neoadj chemo ACT, MX 5/12, 33 rads 6-8/12.

Skin mets 12/12; CMF 1/13; Xeloda/BKM120 4/13; colotectal/abdominal mets 6/13; Hospice 7/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 29 2013 at 11:42pm
Dear TNBC Husband,

Your love for your wife shines through in your words.  I'm so sorry it has progressed, but glad palliative care is available for her.  Both my parents entered hospice and while it signals the next phase, it was a wonderful experience to know they had a team of hospice people to make the transition easier and pain free as possible.  You and your wife will be in my prayers.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote nelliepoo Quote  Post ReplyReply Direct Link To This Post Posted: Jul 29 2013 at 11:11pm
We're here for you both....sending lots of prayers and virtual {{hugs}}!

Janelle
Dx, 45, BRACA-
2011, recurrence 2012, Carbo/Gem, surgery 2nd recurrence 2013 Carbo/Gem, sugery, 4/5 nodes +
2013, Lft Axilla +
Trial 11/2013-6/2014
7/2014 Spread to Pleural Effusion
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Gigisummer Quote  Post ReplyReply Direct Link To This Post Posted: Jul 29 2013 at 10:55pm
Thank you for sharing your story with such clarity and love. It is so helpful to other families and so inspiring to those of us who work each day to bring the necessary services, support, and hopefully, one day a targeted treatment to our beloved TNBCF family. My heart and prayers are with you, your wife and your extended family.

Peace and Blessings.

Stay lifted,

Malaak Compton-Rock
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Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 29 2013 at 10:49pm
Matt,
You and your wife are in my prayers. It warms my heart to hear of her faith and to know of the immense love that you obviously have for her. What are we human beings here on his earth for if not to love each other?
Praying for your miracle,
Beth
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 29 2013 at 3:35pm
Matt
I am so sorry to hear about your wife's status and the pain she is having to endure. It fills me with immense sadness. I thank you for taking the time to write such a clear account of your wife's medical ordeals.  I wish for both of you strength of mind and body.
All the best,
Lee
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jul 29 2013 at 1:39pm
Dear tnbc_husband - Matt,

So very sorry to learn of your wife's recent and current status.

What a treasure you are to her.
What a treasure you are to us, your TNBC family....thank you for this difficult sharing.

Previously, I had put a few thoughts which I had learned from others and from books on
comfort care/hospice care. There are a few comments that refer to another situation but
there may be something in the post that might be helpful.
http://forum.tnbcfoundation.org/thoughts-on-comfort-care_topic10432.html

Will join you in prayer for what is best for your wife........comfort and peace.
What ever is best for your wife includes all possiblities with your   "We continue to pray for a miracle"
and her "being comfortable until her healing happens."



With ever so much love, prayers, and caring thoughts of support to you and your wife,
Grateful for today..............Judy

Edited by Grateful for today - Jul 29 2013 at 1:56pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tnbc_husband Quote  Post ReplyReply Direct Link To This Post Posted: Jul 29 2013 at 1:15pm
Much has happened in the last few months.  The trial of Xeloda and BKM 120 had a dramatic impact on the skin mets but the next scan showed a lymph node that was pressing on her ureter and causing the kidney to swell.  She had a stent put in and had 16 radiation treatments during June.  During this time she also developed pleural effusion which was found to be malignant and consistent with BC.  She had the right lung drained twice and the left once.
 
She struggled through the month of June with terrible constipation and abdominal pain.  All the doctors thought her problems must be lingering effects from chemo as well as from the radiation since the radiation had to pass through the colon.  However, 4 weeks ago her gastroenterologist performed a Sigmoid colonoscopy as her constipation symptoms continued.  He found a tumor blocking her colon and two days later she had an emergency colostomy. She was too weak to try to remove the tumor but she did look around and took biopsies.  She saw considerable spread of disease through the abdominal lining.  As you probably know, BC spread to the GI tract is extremely rare.  After preliminary pathology we thought it might be a separate, unrelated rectal cancer.  However, tests showed that it was, in fact, the breast cancer.  In and of itself that was good news in that treating two separate cancers would have been very difficult as they respond to different chemo agents.  However, it was clear that she would have to get considerably stronger in order to be able to undergo chemo again.  The surgery really took a lot out of her physically.  Regardless, her faith in ultimate recovery was undeterred.  She spent 6 days in the hospital

 

Two weeks ago we went back to UNC for surgical follow up, to discuss the pathology results and a new treatment plan.  Her right leg had started swelling the previous Sunday.  The oncologist was concerned about a clot so we were sent to ultrasound where they found an 8 inch clot in her thigh.  They started her on once a day injections of Lovenox, blood thinner.  Two days later she was coughing and was short of breath.  An x-ray found the right lung full of fluid.  Due to the blood thinner, however, she could not have the lung drained as an outpatient.  She was admitted and had the lung drained over the next two days.  The procedures took a lot out of her, just as the surgery did.  She was finally discharged Tuesday last week.  After meeting with both the palliative care nurse and Hospice consultant, we asked to be referred to Hospice.  We had already been leaning in that direction and this episode underscored how complex her care has become.  Our oncologist told us during our last visit that further treatment would have limited benefit, trading quality of life for at best a few more months.

 

She is at peace with her decision as am I.  But her faith endures.  The way she explained it to me that she knew Hospice meant end of life care to most people but that she still believes that God will heal her and she didn’t see why she shouldn’t be comfortable until that happens.

 

We had the Hospice setup nurse come by Wednesday and received equipment and new medications.  She has been in significant pain since the surgery and this was key to our decision.  I can’t stand to see her suffering.  I have taken a leave of absence from work. It’s amazing how easily I let go of work and am now focused on her care.  She is very thin and very weak.  I had hoped that after the surgery her appetite would come back.  It hasn’t and sometimes eating makes her nauseous.  Instead of rallying and starting to regain her health, she is slipping with each crisis.  The Hospice nurse thinks her body is starting to shut down.  That is consistent with what I have seen in the last 3 weeks.  It certainly is not because she has given up or her faith has waned.  She is amazing and is the reason I can get through each day.

 
We continue to pray for a miracle.  I hope that her story helps someone else recognize symptoms and get the care they need.
Wife DX:12/11 age 55,IIIB, gr 3, 6x8cm+node, BRCA-, TX:DD neoadj chemo ACT, MX 5/12, 33 rads 6-8/12.

Skin mets 12/12; CMF 1/13; Xeloda/BKM120 4/13; colotectal/abdominal mets 6/13; Hospice 7/13
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sarah66 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sarah66 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 08 2013 at 2:09am
iam sorry to here about your wife matt and will pray for her, that things will go well.
 
steve
 this is sarah66 could you tell me who the two women we lost.
 
 steve
also have you heard of metiformin, its a anti-diabetic drug the has been trail for tnbc it kills cancer stem cell. i have been takinng metiformin 500mg. thru my family dr. i took the article written on metiformin written in cure mag. and he agreed at the time to put me on it. i know you have to be careful d/t low blood sugar. i take it since 2011. iam not a diabetic. do think this has help in anyway. take care sarah.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2013 at 4:00am
Hi Matt,

I know it's hard to see disease progression but its really good news there are no major organ mets. The trial you are considering sounds promising. I am doing well on a trial of the pi3k inhibitor BAY80-6946 in combo with taxol. Have been on it for 5 months now with mild side effects and it has shrunk my lung mets way down. I am stable now. Good luck to you and your dear wife and please keep us posted. Your wife's faith is a marvelous thing!
Beth
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tnbc_husband Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2013 at 2:31am
An update. After four cycles of CMF the skin mets responded quite well with the exception of a spot under the arm. However a CT scan on 3/13 revealed an increase in 2 lymph nodes recorded as suspicious in her December scan. These are located in the opposite underarm (left) from the original tumor (right) and were biopsied on 3/25. We received the results today. Positive for TNBC. So...no treatment today, just discussion of next steps. Her left breast still shows NED so very unlikely these are from a new primary. No point in continuing CMF since these lymph nodes are now definitely mets and are growing, despite positive results on the skin.

There is a trial at UNC for metastatic BC combining Xeloda with BKM120, a P13K inhibitor. This seems like a good fit and it looks like she can even start next week. Another possibility was a trial with pacitaxol but she did not tolerate taxol well and still has neuropathy from her AC/T regimen last year. Dr. Carey feels we aren't at a crisis yet since she has no organ mets so a trial with a known drug is a good choice versus completely experimental or standard care alone. Makes sense to us. She has high hopes for the P13K drugs.

My wife has no doubts that God will ultimately heal her. She has me believing now so I have taken this in stride much to my surprise.

God bless all of you.

Matt
Wife DX:12/11 age 55,IIIB, gr 3, 6x8cm+node, BRCA-, TX:DD neoadj chemo ACT, MX 5/12, 33 rads 6-8/12.

Skin mets 12/12; CMF 1/13; Xeloda/BKM120 4/13; colotectal/abdominal mets 6/13; Hospice 7/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 31 2013 at 11:19am
Matt/TNBC husband,

So glad to hear of the good progress with your wife's skin mets!  I too believe that she can be healed, just as I am being healed (lung mets) right now.  It's so important to BELIEVE it and VISUALIZE and EXPECT a healthy body and to live each day with gratitude for what we can do.  I am currently working on a visualization of myself as a healthy 60 yr old (I am 49 now :-)  )

Christine, thanks so much for sharing your inspirational story.  How fabulous that you have been able to live with and control skin mets for 4.5 yrs and have not developed mets anywhere else (I assume from what you said).  So happy for you.  Sounds like you must have great medical care.  Is there anything else that you do to stay healthy that you would like to share with us?

LOve and peace,
Beth
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
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