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Old 10-14-2007, 06:08 AM   #1
Mary Jo
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One year since herceptin ended....

It's been 1 year since my herceptin ended. October 11th to be exact and you know, it truly took a GOOD 6 months to feel back to normal. You know, in all honestly, I think it took even longer when I think about it. Little things. Things you really wouldn't notice unless you looked back and know how you feel today.

As far as weight goes - I feel I've leveled off nicely, and that really was the easiest part. Once the herceptin ended my gained weight (I believe water weight - drugs etc) during chemo/herceptin did drop off quite easily (thankfully). The aches in joints also left quite quickly. But other little things - that you really don't pay attention too or even know suddenly start coming back to normal.

I remember feeling tired early in the evening for a long time. I remember thinking this was probably the "new me." But now being a year out since herceptin ended I feel totally back to my normal self as far as energy goes. Also, when I'd wash my hair or blowed my hair dry I NEVER noticed falling hair. Ever. Not in the tub - not on my shirt and before breast cancer there was always plenty of hair in the tub after I washed my hair - plenty of hair on my shirt after styling it. Just lately, like the past 2 months I've noticed that too is back.

So, in reality, I think it takes a long time after treatment to have our bodies get back to "normal." In some ways it's a bit scary too. I told my husband on the year annivesary since herceptin ended that I feel my body is really back to the before breast cancer body and in some ways that's a bit scary. Oh well, not going to fret about what I can't change BUT will thank God for giving me "myself back" and for all I've learned thus far on this journey. It's been a blessing in many, many ways.

Just wanted to share this with you all and curious as to how others feel about it as well.

Mary Jo
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"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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Old 10-14-2007, 06:17 AM   #2
Sheila
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Marejo
I wonder what it would be like to be done with treatment...I am jealous, but at least after 4+ years of Herceptin so far, and numerous other chemos, I have an excuse for the weight gain...it is great to know that there is normalcy after treatment, although I don't know that I'll ever reach it. You go girl....! Congrats on being 1 yr post the big H!!!!!
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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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Old 10-14-2007, 06:27 AM   #3
Mary Anne in TX
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Thanks so much Mary Jo! Your sharing about the "new old" you was wonderful. I have been hoping two contradictory things...1. I'd get my energy and "me" back when I was off of herceptin and 2. that I'd never get off herceptin!
I know that my hair is different on herceptin also. I think I wash it because I've always done it everyday. It hardly ever gets dirty...well, how would I know!
Mary Jo, thanks a million for being so honest.
Mary Anne
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 10-14-2007, 09:09 AM   #4
Debra
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Mary Jo -

Good to hear you are feeling back to normal! You and I have a very similiar diagnosis. My lgst tumor was almost 4 cm as well and sentinal node had microscopic CA cells.
We are about 6 months apart in treatment so I am 6 months post-herceptin right now. My weight hasn't dropped but it has stopped "going up". I still notice puffy ankles though and hoping that goes away soon.

It is just nice to hear someone say, "I am starting to feel normal again". Sometimes I wonder if that will ever be or if I need to adjust to a "new normal"!
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Diag. 11/05 at age 40 triple positive
3.8 cm tumor and 9 mm tumor
Stage IIb/SN positive(no other nodes)Grade 3
Bilat. mastect. 12/05 (Rt.prophylactic) followed with AC/taxol/Herceptin/tamoxifen then switched to arimidex after hysterectomy in 12/06. August 07 switched to Aromasin due to severe jt. pain from Arimidex. Nov. 2011 No more meds and NED!
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Old 10-14-2007, 09:32 AM   #5
KRISS
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Thanks Marejo yet again. I still have 5 more months of the big H but now know there is an end and most will go back to normal. You give so many of us inspiration. I hope at some time I will be able to post the positive things in my life as you and several others do. Have a blessed day!
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DX IDC AT 42 12/7/06
2.2CM STAGE I GRADE 2
NODE NEG
PARTIAL 12/18/06
HER2+ /ER+(75%) PR+(5%)
4 DD AC CHEMO STARTING 1/10/07
4 DD Taxol Starting 3/5/07
1year weekly Herceptin starting 3/5/07
finished 2/18/08
changed to every 3 weeks 4/23/07
completed 33 radiation treatments 7/6/07
TAH and BSO 9/24/07
start Femarra 10/8/07
Started Neritinib trial 12/14/09
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Old 10-14-2007, 09:40 AM   #6
Mary Jo
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Hi Debra,

Just wanted to comment on your post. I agree that in someways we need to "adjust to our new normal." When you said that sometimes you wonder "if you'll ever be normal again" I can relate to that as well.

As I said in my original post, I truly do feel that PHYSICALLY I am back to my before breast cancer self. I have oodles of energy, I feel strong again, powerwalk/jog 4 - 6 miles every day (everyday cause I love it - strap on my ipod of inspirational music - sing praises and pray and feel TOTALLY REJUVINATED when I'm done - spiritually and physically) feel I look good (if that can be possible and feel healthy once again. That being said...................there is that "new normal" you spoke of and that "self" I also have. That is the "new normal PSYCHOLOGICAL self" That is a "new normal" that took a while to adjust too. It's a much better "self" now, 2 years out from surgery BUT it's a "self" that takes adjusting too. I am totally new and different when it comes to lots of areas of my life. Almost all of those areas are my life are wayyyyyyyyyyyyy better than they were before breast cancer. My whole mental state is better - I am happier - I believe I am healthier BUT more importantly I have an outlook on life that is healthy - happy - and very confident. Then there is that "scared" self (yup that "self" exists too) - that I deal with everyday. It, too, is getting better and better but I believe some of that is just learning to accept our "new normals" and to believe beyond a shadow of a doubt that a plan is in place for each of us and I am learning to accept that and to trust that what is best for me will take place.

So just wanted to say that I understand your feelings and feel much of it also or have felt that way.

Hugs,

Mary Jo
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"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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Old 10-14-2007, 10:24 AM   #7
dhealey
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Marejo, Thanks for sharing your thoughts. It is great to know there is life after treatment and getting back to your some what normal self. Congrats to being NED for so long
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Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 10-14-2007, 02:59 PM   #8
Jean
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Mary Jo
Happy 1st Anniversary!
Yes, life certainly changes during and after treatment. Like you it is all
for the good. Those silly unimportant issues are just that - silly and
very unimportant! Life has developed into an entire new meaning,
I smile more at poeple (even if they don't smile back) I am just so
happy and grateful.

I am now 4.5 months out from Herceptin and I have lost the 20 pds.
that I had gained. Feeling less tired and getting my energy back.
Still experiencing every now and then some muscle cramps in toes, calfs and fingers.

Wishing you all the best
Hugs,
jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 10-14-2007, 03:28 PM   #9
Faith in Him
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Congratulations, Mary Jo. So glad things are back to normal for you. Yes, indeed, God has a plan for you and your life. That knowledge has been one of the only things that has kepted me sane through this whole process. Knowing that He loves my family and children more than I do and has a plan for them too, has also helped.

God's blessings upon you.
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DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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Old 10-14-2007, 03:30 PM   #10
BonnieR
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Thanks Mary Jo. I need reminding that this too shall pass. I am discouraged with how tired I feel now. I have 2 more TCH and then a few more months, at least, of Herceptin. I am hoping the Herceptin phase is a bit easier than I am feeling right now. Although I know I won't feel "normal" for quite awhile..if ever. As you point out, it will be a "new" normal.
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 10-14-2007, 03:41 PM   #11
Debra
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Mary Jo -

Wow! I think your in my head!! Your post to my post, is exactly what I am just starting to see or at least, anticipating to see and feel as I approach my two year mark since diagnosis.
You really sound like you have a new "lease" on life. Some good needs to come out of a BC diagnosis and I believe you have found that. You truly are learning to live with the new normal aren't you?!

Thanks for your post!
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Debra

Diag. 11/05 at age 40 triple positive
3.8 cm tumor and 9 mm tumor
Stage IIb/SN positive(no other nodes)Grade 3
Bilat. mastect. 12/05 (Rt.prophylactic) followed with AC/taxol/Herceptin/tamoxifen then switched to arimidex after hysterectomy in 12/06. August 07 switched to Aromasin due to severe jt. pain from Arimidex. Nov. 2011 No more meds and NED!
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Old 10-14-2007, 03:46 PM   #12
Mary Jo
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To Bonnie.........

Hi Bonnie,

Oh dear, trust me on this..........you will start feeling so much better when the TCH is finished. You will. Chemo is a tough road to tow, not a doubt, but SOOOOOOOO worth your while. You're doing great and are almost finished - YIPPEE - better days are on the way. They are.......they are.....they really are.

Praying for God's Peace to surround you,

Mary Jo
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"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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Old 10-14-2007, 05:40 PM   #13
Vanessa
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Congratulations, so glad to hear you are feeling much better and normal again. You are a true survivor and I wish you the best. Keep on powerwalking!
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Old 10-14-2007, 06:14 PM   #14
RhondaH
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Exclamation Marejo...

congratulations!!!! I TOO have been off of Herceptin for 1 year (as of 8/10/07) and some things are normal, some will never be. My eyes are "foggier" though not as bad as they used to be. My hair is finer and thinner (thinner is ok as I USED to have 3 heads of hair...but it still feels like something is missing). The neuropathy in my feet is still quite bad (some days worse than others). And my toenails are thick and ugly, but considering the alternative...I'm wonderful. Take care and BIG huggs.

Rhonda
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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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Old 10-14-2007, 08:23 PM   #15
Sherryg683
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Never really thought that it could be the Herceptin that was keeping me from getting off that last 5 pounds (OK, I'd like more but I'd settle with 5). sherryg
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Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 10-14-2007, 10:14 PM   #16
Catherine
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Quick comment.

Just returned after a long day and a long weekend. This is just the post I needed to see. Maybe I will get my evenings back one day. My last Herceptin is Dec 7.

As always, thanks for the details and the facts.

Catherine
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Catherine


Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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Old 10-17-2007, 08:54 PM   #17
weezie1053
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Mary Jo,

I too would like to thank you for your post. My AOL was down, and I have been "powerwalking" through threads. I have two more Herceptin treatments left, and your cheery message was like turning on a light switch to get me out of my recent slump. I have read that Herceptin can cause mild depression, and I am beginning to believe it to be true. It is so hard not to worry about tomorrow, but your inspirational words give me hope for feeling normal in the weeks and months ahead. Although I have always loved my job, I think once you start looking better on the outer self, they assume you are "healed," and we all know we are still suffering from the Chinese disease, "draggin ass." It's hard to keep up our old routines.

Thank you so much for turning on my light switch. I have plans for my last treatment. I am buying a huge sheetcake for the nursing staff to celebrate with. I am also buying my Oncologist a new white coat because I am sick of looking at his yellow sleeves. I teased his secretary that he leaves it on the back of his office door, and she said she thinks he leaves it on his floor. I work retail, and I just can't help notice details on clothing.

Wishing us all sunny days ahead. God bless this website!

Louise
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  • Diagnosis 06/06 - Stage II-A BC; BC was 2.5 cm, grade 2; ER/PR negative & HER-2/neu positive;
  • Mastectomy w/ reconstruction (implant) in 09/06;lymph nodes - negative;
  • AC/Cytoxin combo - 4 treatments (dose dense);
  • Taxol/Herceptin combo- 12 weekly treatments;
  • Completed chemo - 2/07; completed restruction 02/07; reduction of left breast.
  • BRCA 1 and 2 negative - 6/15/07;DX high risk for distant recurrence
  • MRI, 08/02/07 - NED
  • 1 year Anniversary - 09/07; completed Herceptin 11/07.
  • Mammo 02/14/08 - NED; MRI - 08/2008 - NED
  • 2 year Anniversary - 09/08
  • Mammo 02/09 - NED; MRI - 08/09 - NED
  • 3rd year Anniversary - 09/09
  • 5th Annivery - 09/2011 - NED
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