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Old 09-23-2013, 03:20 PM   #1
Jackie07
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Mother has passed at 90 Sept. 21

[Mother had been my care giver since day one - the day I was born! As a premee, I needed special care after she took me home from Neonatal ICU. All through the many diagnoses/treatments, she'd been my best advocate and source of encouragement/support.]

My mother was an amazing woman who had lived an amazing life. The oldest child of a successful merchant in the Capitol of Yunnan - the Southmost province of China, Mother was living a comfortable life when the War broke. Being the first born, she was pampered by Grandpa and raised like a boy. Grandpa scolded Grandma when he found out, after returning from one of his many long business trips, that Mother's feet were 'wrapped' according to tradition (a symbol of status as the girl child is not expected to do any housework the rest of her life.)Grandpa was furious! He'd been travelling to many places and knew the world had changed drastically. The tradition of foot-binding was totally unacceptable! Mother's feet were spared –after suffering for more than a week. Grandpa encouraged Mother to go to college - at a time when most girls would enter arranged marriage by 16... Mother passed the same high expectation to her daughters. The three girls of her six children were raised feminist before we’d even heard of the term!

Mother loves wearing bright-colored clothing and likes to see her youngest daughter dressed in red – traditionally the color resembling good-fortune and happiness. Most of our new clothes were tailor-made by a neighbor living in the same alley before mass production became available/popular. When Oldest Sis was studying fashion design, I became her ‘model’ as well. There was a real cute red dress that I ‘d treasured for a couple of years and the tailor copied Oldest Sis’es design when I’d out-grown the original one. Imaging a slender 5’7’’ teenage girl wearing red from head to toe! (Yes, including a pair of red lofers!)

Quite a few families in our Army village sent their children out of district to attend the star schools in the big city. Those kids suffered from long commute in air-polluted route and were often lack of proper supervision – there’s just nothing good about it! Mother would always try to persuade other parents to send their children to the local schools I’d attended all through junior high. “My daughter never needed any special tutoring and she went on to attend the best college …”

Mother was old-fashioned in many ways (I was born when she was in her late 30's and Father was turning 45). When the government was pushing for family planning/birth control to curb the rapid population growth, she refrained from advocating the policy. Most of the women in her generation have on average 5, 6 children (the most I knew was 9!) – “How could we convince those younger Moms when we ourselves have already had so many children?” Yet when I was attempting to conceive via artificial means, she vehemently expressed her disapproval over the phone: “You have been through a major surgery – you won’t be able to endure the harsh child-labor… I have been there many times, I know how tough it is! ”

Mother insists that "women and men (in that order are equal". She hates the smell of cigarette smokes produced by Father at home. Yet in those Commissioners meetings, Mother had often been seen to hold a lit cigarette in between her fingers. She had to act like a man as the only female representative in the Commissioners Court which was composed by mostly ill-mannered local powers with little formal education. To many of the poor and powerless citizens, Mother was their only advocate because she’s not serving to gain profits nor for self interest.

Mother stayed active after retirement. She rode buses to the closest elementary school in the city to partake in folk dancing, sword dancing and fan dancing. She took correspondence courses from National Taiwan Normal University and participated in the writing workshop. She took on Chinese painting and published a collection of her works as well as a biography and a travel note. She also participated in the 'Silver Head Royals' program and visited many schools to share her life story with the students. Mother has achieved the three‘everlasting’ virtues ‘ described by ancient sage: “Do good deeds, achieve great goals, and write something to pass on.” Indeed, just as my late Father would often utter, Mother is a ‘woman with a good fortune’ !

'I can't' does not exist in Mother's vocabulary. When the communists were taking over the Mainland, Mother brought her oldest two children to safety. When she located Father in Taiwan, after thousands of miles travelling escaping the chaos of the war zone (from the Northeast to the Southwest of China, then Shanghai, Hong Kong, and finally Taiwan), Father was beyond himself! Father would often utter: "There's nothing your Mother can not handle. She's smart, resourceful, and above all, she's tough!" I am saddened to see a life vanishing in front of our eyes, yet I am at the same time proud to have such a wonderful Mother who has given me everything I need to face the challenges of life! Good-bye, Mother!
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NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 11-19-2013 at 04:59 AM..
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Old 09-23-2013, 03:36 PM   #2
SusanN
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Re: Mother has passed at 90 Sept. 21

What an amazing mother you were so very blessed to have!! Thank you for sharing her "highlights" of loving, living her life!!
Beautiful, from the inside out, JUST LIKE YOU!!!
Prayers being sent your way for peace and comfort!
__________________
10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
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Old 09-23-2013, 04:08 PM   #3
NEDenise
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Re: Mother has passed at 90 Sept. 21

Dear Jackie,
My heart breaks for you. I know that your memories will comfort you as the adjust to life without Mother.

I can't help but smile though when I think of your parents being reunited. Such joy!

I'm so sorry you are hurting... you and your loved ones are in my prayers.
Denise
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Old 09-23-2013, 07:49 PM   #4
LoisLane
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Re: Mother has passed at 90 Sept. 21

Jackie what a wonderful tribute to your mother. The world she grew up was so different than we have experienced, but your grandfather instilled in her the will and strength to be who she was. Sounds like she experienced her life with confidence, proud of who she was, and passed her strength and ideals on to her children. She was blessed with intelligence,
a joy of life and she wanted to savour it all. You were blessed to have her so long! my thoughts are with you Jackie. Lois
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August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
ER+PR-
Stage I Grade 2
Radiation and Femara

November 2008
Lumpectomy right breast
2 tumours .03 cm and .05 cm and extensive DCIS
.05 tumour Her2+
lymph node negative
venous/lymphatic invasion "indeterminate"
ER+PR low postive
Stage 1 Grade 2

January 2009
bilateral mastectomy
chemotherapy taxotere
Herceptin one year
Femara
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Old 09-23-2013, 08:32 PM   #5
Laurel
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Re: Mother has passed at 90 Sept. 21

Jackie, I am so sorry for the loss of such an amazing and accomplished woman as was your mother. It seems to me that the apple did not fall far from the proverbial tree in the case of you!
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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

10 Years NED
I think I just might hang around awhile....

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Old 09-24-2013, 05:20 AM   #6
Becky
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Re: Mother has passed at 90 Sept. 21

Dear Jackie

I am so sorry to hear about the passing of your amazing mother. My heart goes out to you and your family.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 14 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 09-24-2013, 11:44 AM   #7
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Re: Mother has passed at 90 Sept. 21

Thank you so much, dear Jackie, for sharing this peek into your family's world. Having you rmother's feet unbound must have had a marked effect on her future.

My husband was born in Shanghai, and his family also has many stories of fleeing from the revolutions in Russia and China. Those people did what they HAD to do to survive and therein lies our common ground as we do the same.

I wish peace and comfort for you as you pass through the coming days and weeks.
__________________
"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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Old 09-25-2013, 07:07 AM   #8
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Re: Mother has passed at 90 Sept. 21

Jackie,
Heartfelt condolences.
Yours, with love,
Karen
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World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 09-29-2013, 03:26 PM   #9
Mandamoo
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Re: Mother has passed at 90 Sept. 21

My condolences to you Jackie.
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Old 09-29-2013, 04:25 PM   #10
Pamelamary
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Re: Mother has passed at 90 Sept. 21

Thinking of you, Jackie - and a wonderful tribute!
Pam.
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Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
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Old 09-29-2013, 08:02 PM   #11
ElaineM
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Re: Mother has passed at 90 Sept. 21

I am so sorry to hear about the passing of your mother,
You will miss her greatly, but she will continue to look after you the rest of your life from wherever she is now.
Hugs
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Peace,
ElaineM
12 years and counting
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Old 10-03-2013, 08:21 PM   #12
starwishn2
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Re: Mother has passed at 90 Sept. 21

I am so sorry for your lost. Such a lovely tribute that you shared with us about your mother. A girl always needs her mom. My mother passed away almost 3 years ago. I have missed her every day. My thoughts and prayers are with you and your family at this time.
Jeri
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Splenectomy 11Nov2009
Rituxen May2011
ITP playing nice
Diagnosed 3Jul2012 BC

2 cm - Grade 2 - Stage IIB
HER2+++

ER+/PR+
bilateral mastectomy 20Jul2012
Metastasized cancer found 1 lymph node
expanders placed during surgery
TCH chemo "cocktail" started 24Aug2012
every 3 weeks - 6 treatments
Herceptin - 18 treatments
LAST treatment Taxotere & Carboplatin 7Dec2012 -yay!
Continue with Herceptin 26Dec2012

Started Arimidex 01Jan2013 (for 5 years)
Surgery to remove expanders/reconstruction 18Jan2013
Infection in left breast from reconstruction/infection in most nails - SO many meds! 22Feb2013
Left implant not playing nice.... might need to remove and try again - blah! 04Apr2013
3Jul2013 - one year since diagnosis - booo cancer!

15Aug2013 LAST chemo infusion!! YIPPPEEE!!!
13Sep2013 2nd reconstructive surgery.. the FOOBs are looking good!



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Old 10-03-2013, 10:31 PM   #13
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Re: Mother has passed at 90 Sept. 21

Thank you so much for sharing that, how beautiful, what an amazing role model and caregiver you have been blessed with. May she long continue to watch over you.
Best wishes
Fern
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Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.


Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 Thoracentesis 1500 ml drained from right lung.
June 2016 CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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Old 10-05-2013, 03:53 PM   #14
Andrea Barnett Budin
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Re: Mother has passed at 90 Sept. 21

A most beautiful eulogy, Jackie. You indeed were blessed to have such an extraordinary woman as your mother, guiding you though life! And, look at how strong and brave and determined you are. Good genes and a solid foundation. Nothing will stop you either.

Your colorful mother, with passions and interests that I readily identify with, is surely a loss to the world, and most especially to her beloved family.

90 is a great accomplishment. It is always too soon, though. And I wish, she could have collected more years.

Your love for this remarkable woman is evident. I am so sad to learn of her passing.

Ever fondly, Jackie, and with great admiration for who you are,

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 10-06-2013, 05:26 AM   #15
LeahM
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Re: Mother has passed at 90 Sept. 21

Jackie
What a memorable life your mother led. I am sorry for your loss but glad you had that strong woman by your side for all these years.
Leah
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Old 10-10-2013, 03:54 PM   #16
ammebarb
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Re: Mother has passed at 90 Sept. 21

I am so sorry, Jackie, for your loss.

Barb .
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Old 10-10-2013, 09:50 PM   #17
norkdo
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Re: Mother has passed at 90 Sept. 21

what an amazing woman. i would love to read a book about her.
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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 10-15-2013, 02:36 AM   #18
Jackie07
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Re: Mother has passed at 90 Sept. 21

Thanks, everyone. 2nd Sister has just e-mailed several picutures. This is Mother's funeral setting. Click image for larger version

Name:	Mother - funeral setting.jpg
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ID:	1188 (I have not been home since 1998 when I flew to Taipei to persuade Mother to undergo surgery/treatment for non-Hodgekins Lymphoma. The common belief among Chinese (for a very long time - long before the knowledge about angiogenesis) was that cancer patients would live longer if they could avoid surgery. Mother had the surgery + Chemo + Radiation and had a good quality of life for another 15 years.

Mother and I were very close - I just couldn't take long trips because the cabinet pressure had been and will be too much for my very injured brain.
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NICU 4.4 LB
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Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
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Irrtbl bowel 1'09
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Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 10-19-2013 at 02:57 PM..
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Old 10-27-2013, 02:43 PM   #19
Adriana Mangus
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Re: Mother has passed at 90 Sept. 21

Jackie,

As I'm reading your Mom's life story--which was fascinating - especially considering the times when she was born--couldn't help but to think about my own mother, who much like yours was born ahead of her time. The word "can't" did not exist in her vocabulary either.

You are so lucky to have had such an amazing woman as a Mother. I truly enjoyed your post. You are such a talented writer.

God Bless you and your family.

Adriana
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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