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10-01-2020, 07:58 PM
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#1
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Senior Member
Join Date: Jul 2010
Location: South Jersey
Posts: 516
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5 years later, In honor of my mother..
Hi all! My name is Anna and I just logged into my late mother's account. She left passwords and everything for us before she passed and I just now found them and decided to see what she has said. I was hesitant because I knew it would hurt but I was also disappointed in my self for not have doing this right after she passed to talk to everyone. My mother died on June 9th, 2015 and if any of you knew my mother Penny, she was truly a great person(my bestest friend) and I would do anything to be with her even just for another moment. Reading her old posts and the many who helped comfort her during the hardest of times has been bitter sweet. It has been over 5 years since she logged into this account and I am amazed it was so smooth. Words cannot describe how grateful I am for this to still hold her many memories that I can now look back on. It is extremely hard seeing her old updates and seeing all of the stuff she knew about going on within her and how much time she had left. She was so incredibly strong and I have absolutely no clue how she did it all. I was 6 years old when she was diagnosed and 11 when she passed away, so I was not aware of much that went on with her, I usually just got informed if it had been a bad or good week and would spend every second with her coloring in bed or watching movies. I was truly spoiled by her and slept by her side until I could no longer. This information being here has helped me see the sides I was too young to see back then. I think a lot about how if only it had been 5 years later on, maybe she would have better chances, and why her. But I have to stop, she was very strong on faith and that God had a plan for everyone. I know she is no longer suffering and just look forward to the day we can meet again. I have no clue if anyone will even see this but I wish everyone well and hope you all can overcome all struggles that face you, and I thank those that if any see this, were there for my mom.
__________________
...but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. (2 Corinthians 12:9)
Penny
July 2010 IDC grade 3 stage 3 er-/pr-/her2+++, BRCA2
Skin mets 11/10
1/12/11 Surgery path - complete response
Rads 2/11-4/11
Liver mets 11/11 now stage IV
Xeloda & Tykerb 12/11
Allergic reaction to Tykerb 12/11
Xeloda only 12/11
Added herceptin January 2012
Progression February 2012.
Started Veliparib (parp inhibitor) trial 3/5/12.
4/30/12 Liver met shrunk in half! Praise Jesus!
6/18/12 another 25% shrinkage, down to @3x3. Thank you, God!
8/8/12 Brain MRI - clear! Praise to You, Lord Jesus Christ!
8/27/12 Thank You, God - another 20% decrease in liver met! Now @ 3.2x1.9.
10/5/12 stable-ish
11/21/12 allergic reaction to carboplatin
12/10/12 stable & progression
12/31/12 liver ablation
2/6/13 ablation successful but new tiny mets in liver. May or not be cancer.
Another ablation scheduled 2/28/13. Cancelled.
2/20/13 started taxotere & herceptin. Pretty toxic. Oncologist says start tdm1 4/3/13. From her lips to God's ears. Praying for no allergic reactions/adverse side effects.
3/28/13 increase in liver mets - number & size
4/3/13 started TDM1
6/25/13 Praise God! Scan shows only one viable lesion and it's smaller.
10/8/13 MRI shows 1 large and two small tumors.
10/11/13 Ablation of tumors. It's in God's Hands.
10/23/13 Jesus and TDM1
12/19/13 Started trial of palbociclib & herceptin after scan showed growth of liver tumor and a questionable spot on rib.
2/6/14 CT scan - previous suspicious spot on rib probably damage from radiation - Praise God! MRI - over 200% growth in cancer in liver.
2/19/14 started Navelbine, Perjeta, & Herceptin combo.
5/2-5/4/14 hospitalized with very high liver function numbers, plus skin and eyes are yellow, plus urine is orange. Feel ok, so doctor not sure if liver failing due to cancer, chemo, or infection. Hospital gets numbers to go down and sends me home. MRI done in hospital reveals cancer shrinking - praise God!
5/6/14 - 5/8/14 hospitalized with no white blood cell count. Released when they go back up, @ 6 days after doctor gave me a neulasta shot.
5/16/14 - informed blood cultures done in hospital are back and that I contracted hepatitis e. Have to take ribavirin (anti-hep med) until liver function numbers are back to "normal" before re-starting chemo. Will probably go on veliparib and temodar this time.
5/26/14 - my birthday - GI doctor informed me that the hepatitis e was completely gone - I didn't even need the anti-viral meds! This is a miracle from God!
5/28/14 - started veliparib and temodar (compassionate use)
8/18/14 MRI shows 90% growth in liver tumors
8/20/14 start Perjeta, Herceptin, & Navelbine. Thanking & giving Glory to God for each moment.
9/22/14 - 9/24/14 Hospitalized with 102.2 fever and neutropenia
11/13/14 ER for high fever and fast heart rate. Got both down with IV antibiotic and fluids. Sent home same night. Thank You, Lord!
12/2/14 MRI shows progression in liver. Grateful to God that I still feel good.
12/11/14 Simulated SIR-spheres. Successful. Real thing (1st lobe) scheduled for the 23rd. Also starting Xeloda on 22nd for 2 weeks because it's synergistic with the spheres.
12/23/14 SIR-spheres in left lobe of liver. On Xeloda 12/22/14 - 1/4/15.
1/7/15 Receiving Perjeta & Herceptin while awaiting next course of action.
2/9/15 SIR-spheres in right lobe of liver. On Xeloda for 2 weeks (started 2/8). Still on Perjeta & Herceptin. Don't know what's next for me. :-)
3/25/15 Final read on MRI report - there are new and multiple lesions in both lobes of liver. Sigh. Praise God I've made it this far!
4/1/15 Started Gemzar & Herceptin. 1st week G&H, 2nd week G only, 3rd week off. Thank You, Lord, for this option.
4/15/15 Labcorp - liver enzymes in 200's. Appointment 4/22 with oncologist to discuss. Also, "radiation recall" in previously treated area? Very itchy. Need to discuss.
4/22/15 Enzymes came down. Received reduced dose of Gemzar only. No herceptin. Will get labs at lapcorp next two weeks since taking break for vacation purposes. Treat radiation area.
5/9/15 ER for severe abdominal pain. Constipation. Sent home with meds and advice to follow up with oncologist regarding jaundice and bilirubin.
5/11/15 Hospitalized for rising bilirubin and jaundice. CT scan reveals larger and more constricting tumors in liver.
5/13/15 Met with my oncologist. Bilirubin came down. If still down by Monday, I'll get chemo. If not, than I guess I'll see you all in Heaven. Praise God. Please pray, pray, pray.
5/18/15 Bilirubin jumped up. Trying lowered dose of Ixempra, with Herceptin. Oncologist is surprised that I'm functioning so well, given the high bilirubin. I have anywhere from 2 weeks - 2 months to live.
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10-02-2020, 12:28 AM
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#2
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Senior Member
Join Date: Oct 2013
Posts: 474
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Re: 5 years later, In honor of my mother..
Anna
Im sorry about your Mom. My God you are only about sixteen now but sound very mature. Im glad you get comfort looking at her posts. Im curious myself to see them and will search for them tomorrow. Thank you for coming on board. God bless
Paul
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10-02-2020, 06:09 AM
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#3
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: 5 years later, In honor of my mother..
Hi Anna- I too remember your Mom posting and I know it's bittersweet for you to read her posts now but I'm glad you can find comfort in them. I really am so sorry you lost your Mom at such a young age but I think she'd be very proud of the young woman you've become. Best wishes to you.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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10-02-2020, 06:13 AM
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#4
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: 5 years later, In honor of my mother..
Hi Anna- I remember your Mom and feel so sorry you lost her at such a young age. I'm also glad you can find some comfort in reading her posts here although can well understand it's bittersweet to do so. My best wishes to you going forward and I feel sure your Mom would be very proud of the young woman you've become.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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10-02-2020, 06:20 AM
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#5
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: 5 years later, In honor of my mother..
Hi Anna- I remember your Mom posting here and I'm so sorry you lost her at such a young age. I'm glad too that you can find some comfort in reading her posts although can well understand it would be a bittersweet experience. My best wishes to you going forward and I feel sure your Mom would be proud of the young woman you've become today.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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10-02-2020, 12:40 PM
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#6
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Senior Member
Join Date: Oct 2013
Posts: 474
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Re: 5 years later, In honor of my mother..
Anna
You should print out some of your moms posts to show your future children about their grandmother. Boards are funny things. Due to google politics they can disappear suddenly. Its not that likely here but why take a chance. Print them out now and be safe.
If you dont have a printer at home, go to a library.
Paul
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10-02-2020, 07:35 PM
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#7
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Senior Member
Join Date: Sep 2005
Posts: 49
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Re: 5 years later, In honor of my mother..
So sorry for your loss Anna.
Thank you for sharing with us.
Hope you continue to find strength and comfort in your life.
Good luck in all your pursuits.
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10-05-2020, 12:17 PM
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#8
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: 5 years later, In honor of my mother..
I'm sorry for your loss. You were so very young when she passed and yet you write about her like someone much older. It's as if she's tried to share herself with you at double the normal speed, so you could benefit from her love and wisdom long after she was gone.
I remember your mom well. I spent a lot of time on these boards in the 16 years after my diagnosis in 2004, so we "met" regularly. I agree that you should print out everything she has written. One day it might be gone from the internet.
My father passed two years ago and going through his stuff, I found the letters my parents wrote to friends and family during the time we lived in California (we're from the Netherlands, Europe). It's amazing to read their thoughts on things that I never discussed with them. Take good care of yourself.
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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10-06-2020, 12:13 PM
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#9
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Senior Member
Join Date: Oct 2013
Posts: 474
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Re: 5 years later, In honor of my mother..
Anna
These posts are important to you and, as Lien said, you may not be aware how transient these boards can be. I worked as a consultant pharmacist on an AOL breast cancer group in the late 1990s to 2008. The work I did on this board was more important to me than working at Rite Aids. In 2008 the Board was dissolved. There was one woman on the board whose screen name was Exblaze, She was a woman in her early 40s with metastatic breast cancer and two young children. Not seeing them grow up was her biggest concern. She died in June 2006 a few days before her daughter graduated high school.
She was an exceptional woman. To me she was almost saintly. Certainly with her condition and children she would be entitled to think mostly of herself. She didnt. She was very nurturing and protective of all the other affected women on the board. To the point of being self sacrificing
I didnt have a printer so I spent months writing down her posts over the years. I still have them in two notebooks. I told her older brother I would write a book about them but I never have and feel guilty about this. I just dont know what to write. Maybe someday I will.
I can understand having these posts so available to you may be painful right now. You could print them and give them to an aunt or uncle for safekeeping until you feel ready to possess them.
Paul
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10-16-2020, 05:47 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: 5 years later, In honor of my mother..
Dearest Anna,
We see your words and want you to know we remember your mother. She was brave and fought this disease with great tenacity, courage and grace. Her amazingly strong faith in her Savior filled every post she wrote and shared with us. We were blessed to have "known" her and to have fought along by her side against a shared foe that never fights fair.
Your mother surely treasured every moment you spent by her side. The mere presence of a cherished love one brings comfort to us as we struggle. You may have been too young to understand all that was happening, but your love and companionship were a great blessing to your mother. Anna, you were a comfort to her just by staying close. What a wonderful daughter you were to your mother. How lucky she was to have had you! What a brave little girl you were!
Anna, you may be proud of your mother. She never gave up or surrendered. You want to ask, "why?" When I was diagnosed I never asked, "why me?" Instead I said, "why not you?' Every life has its heavens and its hells. It is how you learn to soar in the in the heavens and burn through the hells that characterizes a life. I believe your mom was a woman who soared and knew how to endure the heat of illness. May you be just like her and carry her love and memory with you always. God bless you, dear Anna, and thank you for visiting us.
__________________
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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10-26-2020, 06:27 PM
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#11
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: 5 years later, In honor of my mother..
Hello to Penny's daughter. How brave of you to find the strength to find your way to this web site and visit your mother as we knew her. She was a tower of strength as she posted her cancer life story here. You have a wonderful role model.
__________________
"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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