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11-28-2006, 11:28 AM
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#1
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Member
Join Date: Nov 2006
Posts: 8
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Update on Hope-Please Pray
Hi My name is Julissa and I am Hope's daughter. I have been a lurkeron this board for some time but many remember my mom as an active particicpant in the past. Sadly she is not doing well and is now in hospice care and I really feel that the end is near. Both myself and her companion live in the house and we are trying to keep her comfortable as possible. She is on hydromorphone for pain and ativan for anxiety but is conscious for most of the day. Right now her right lung tumors are really progressing, brain and bone mets appear to be stable
I am trying to be the best advocate for her care for the 4 years after being diagnosed at stage 4 in Oct. 2002 but there is no more chemos to try as she has tried them all and is too weak to repeat them. I have checked into the Lapatinib EAP trial but infortunately she is so weak that she is ineligible to be on the study. BTW the protocol states that you have to have a ECOG status of a 2 and she is a 3 now.
Hospice has been a great support to us and as much as both her and I did not want to give up sadly we have run out of options. Please keep her in your prayers and I will continually update this board on her condition. Peace and Love, Julissa
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11-28-2006, 12:49 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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so sorry to hear this news. sounds like Hope has a wonderful support system..lucky! Prayers sent your way
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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11-28-2006, 01:54 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Hi,
Sorry to hear this news. My thoughts are with you and with her.
Barbara H.
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11-28-2006, 01:58 PM
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#4
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Senior Member
Join Date: Mar 2006
Posts: 306
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Dear Julissa,
Thank you for sharing this sad news with us... I have wondered how your mom was doing.
Please give her a hug and kiss from me, a fellow brain metster and occasional poster to your mom.
Hoping for good moments in the days ahead for you all.
pattyz
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11-28-2006, 02:18 PM
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#5
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Senior Member
Join Date: Aug 2006
Location: PA
Posts: 188
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Julissa,
Just wanted to say I will keep you, your mom and your family in my prayers.
May peace be with all of you during these difficult days.
__________________
Susan V - Pittsburgh PA
DX Age 37 on August 3, 2006
Stage 1 Grade 3
ER/PR + (Highly Positive)
Her 2 +++
1.3 & 1.2 tumors right breast
node negative
lumpectomy 8-15-06
A/C Began 9-5-06 Finished A/C 11/6/06
Port Placement 9-15-06
Negative Test for BRAC1 & BRAC2 10-25-06
Began Tamoxofin November 21, 2006
First Herceptin November 27, 2006 Continues every 3 Weeks
First Radiation Treatment December 11, 2006
35 Rads Completed
Final Herceptin Treatment November 12, 2007
Port Removal November 19, 2007
Living Life to the Fullest !!
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11-28-2006, 02:19 PM
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#6
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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I am sending prayers your way. So sorry to hear the sad news about your mom. This disease is horrible even with all the advancements, we are still losing too many. Your mom is so lucky to have you with her all this time for support and love. Hospice is wonderful in cases like this. I hope they can keep your mom comfortable. My heart goes out to you.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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11-28-2006, 03:23 PM
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#7
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Senior Member
Join Date: Jul 2006
Location: ontario, canada
Posts: 48
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Dear Julissa,
I am so very saddened to hear about your mom. All of you will be in my prayers as you struggle through this terrible time. I pray for your peace and that your mom will be comfortable, feeling all of the love that is surrounding her. Never stop praying for a miracle!
Take care,
Karen
"The Good Lord gave us mountains, so we could learn how to climb!"
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11-28-2006, 04:05 PM
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#8
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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May God's Peace surround you all and hold you close. My heart can feel your sorrow and I send a hug your way.........from my heart to yours.
Blessings of Peace I send .......
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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11-28-2006, 05:05 PM
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#9
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Julissa,
My prayers are with your mom and your family. Peace be with you at this tough time.
Hugs and Prayers,
Lexi
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11-28-2006, 06:38 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Julissa...
Done...Take care and God bless.
Rhonda
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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11-28-2006, 07:39 PM
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#11
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Julissa,
I'm very sorry to read this sad update on your mom. She's very fortunate that she has you for support. Just remember - miracles do happen. I will keep your mom in my prayers.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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11-28-2006, 08:03 PM
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#12
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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It saddens my heart to hear of another sister nearing the end with this terrible disease. I will keep you in my prayers for peace and comfort. She is so very lucky to have you there for support along with the others. Sending you a big hug. Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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11-28-2006, 08:18 PM
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#13
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Senior Member
Join Date: Mar 2006
Location: (Hill Country) Texas
Posts: 72
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Julissa,
My prayers are with you during this time. Just remember that He is in control. Your mom is very fortunate to have the support from you.
God Bless
__________________
Jackie
Stage II, Grade 2, DX 4-05
EP +, HER2 +++,
1 node+, 1.6cm
46 yrs. old at time of dx.
Completed Chemo 11-05
Completed 1 yr. Herceptin 8-06
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11-28-2006, 08:21 PM
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#14
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Julissa
You and your Mom are in my prayers at this time, she is very lucky to have a daughter like you to support and love her through this terrible illness....may you both feel the love and warmth that surrounds you as only a mother and daughter can share....I will be praying for a miracle for your Mom, but as we know, this is in the hands of a higher power.
Hugs to you and your Mom
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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11-28-2006, 09:20 PM
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#15
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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I am so sorry to hear that your mom is not doing well. All of you are in my thoughts and prayers at this time. Thank you for taking the time to update us. You are a great daughter.
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11-28-2006, 10:14 PM
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#16
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Thanks for letting us know Julissa. I'm very sorry and pray for a miracle. Seen the news the last few days about having herceptin injected in the spinal fluid to get past the brain barrier. Maybe email Lani or Becky to see if they have any treatment ideas. Keep in touch, we care. BB
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11-29-2006, 03:59 AM
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#17
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Senior Member
Join Date: Oct 2006
Location: Fredericksburg, VA
Posts: 93
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Dear Julissa, I'm so sorry to hear your mom is not doing well. It sounds like it has been a long road for all of you. Your mom must be so very proud to have such a loving, supportive daughter. My heart is heavy for all of you, but know that God is with you all the way.
Peace and blessings
__________________
Liz
3/05 Initial dx invasive dc 2 cm lump, age 39
lumpectomy & 3 of 5 nodes +, ER+/PR+, Her2+++
alternative chemo 5/05-7/05, rad 8/05-10/05
7/06 dx mets to vertebrae, pelvis & chest lymph nodes
8/06 - 10/06 tamoxifen, herceptin, oophorectomy & zometa
11/06 PET/CT showed continued bone mets, new spot on liver
12/06 began taxotere/herceptin 1x/3 weeks,
2/07 - 2-08 NED!
3/08 progression, start taxol/herceptin weekly, monthly zometa
8/08 start ai & herceptin
12/08 - progression, start weekly navelbine/herceptin thru 6/09 & monthly zometa
7/09 - PET/CT showed improvement in spine, but 2-3 lymph nodes in chest became active
9/09 - 11/09 - weekly abraxane/herceptin
12/09 - PET/CT - chest lymph nodes resolved, progression in spine & pelvis
2/10 - 6/10 - start tykerb/xeloda, progession in spine & pelvis
7/10 - start taxotere/carboplatin/herceptin
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11-29-2006, 12:30 PM
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#18
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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so much love to you and your family
Thank you for the update. With all you have going on it is very meaningful that you took the time to post. Take good care of yourself as it is evident that you are taking great care of your mom already.
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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11-29-2006, 02:55 PM
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#19
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Yes, hospice is a good thing. I am glad your mom and your family are getting support from hospice. I am sending up prayers. Your mom has a beautiful and appropriate name.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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11-29-2006, 04:16 PM
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#20
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Senior Member
Join Date: Oct 2005
Posts: 476
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Julissa,
My prayer is for you and your family. Peace and tranquility be with all of you. God bless you.
__________________
Ann
Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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