Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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05-08-2007, 03:07 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Takes some special people
Flori, BH and Joy,
"I'd like to think we are the new faces of cancer. There are so many angles to examine with living with what is universally such a dreaded disease and what it takes to do that every day."
Joy you really said it well. It reminds me of a "stupid insensitive comment" a woman at my church made. She told me she was going to treat her (stage1) BC very aggressively because she didn't want to end up like me! I almost started laughing out loud because the first thought that came to my mind was "well, yeah, stage IV cancer isn't for everybody!"
It takes very special people to live with this every day - and although I know none of us would really choose THIS as our way to be "special", I want you to know that you really ARE!
Imagine "less special" people being able to face this crap (oops, more potty jokes!) with such humor, grace, and strength.
You guys are just awesome
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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05-08-2007, 05:30 PM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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OK, I'll just come out and say it... WE ROCK!
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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05-13-2007, 01:29 PM
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#3
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Senior Member
Join Date: Oct 2005
Location: TN
Posts: 84
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I just want to say as a stage 4'er, that I would love to see more on TV of survival...the new face of cancer. It never ceases to amaze me the 'stars' who are stage 1, who have done everything from smoking pot to chemo to radiation, and they have beat it! now, us stage 4'ers are never even recognized...not in the media, not by the 'stars' or anyone else. (with the exception of our loved ones, and others who are stage 4)
It would be nice to see others have fought & survived! And we really are not alone 
__________________
3/2003-Dx'd Stage 4 Her 2+++
"Life is not measured by the number of breaths we take, but by the moments that take our breath away."
Dum spiro spero (Latin: while I breathe I hope)
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05-13-2007, 10:52 PM
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#4
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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High profile people - low cancer stage
Well, I have to wholeheartedly agree with most of what has been said in this thread. I am not a Tykerb Tiger, but may be someday if mets kick up again, so am watching all these posts with great interest.
Elizabeth Edwards is not far enough into her Stage IV "life" to really appreciate where most of us are in our survival. She was not the greatest spokesperson on the Ted Koppel show. A "babe in the woods" so to speak. Maybe waiting for her first scan at that time.
It is so difficult to transmit to others who have not lived this cancer life what it takes to manage our "new normals." There is no balance in our lives as we knew it in the past. We learn to live on a teeter tooter, trying not to let the ends touch the ground. Our "cancer sea legs" as it were.
Could we really make Oprah and her viewers understand at all?? Maybe worth a try, but how to get the idea across that our cancer becomes something like a nagging wart that we have to keep dealing with? We have to minimize it, but at the same time keep a healthy respect for the disease. Otherwise we would all be in the Loony Bin.
__________________
"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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05-14-2007, 11:35 AM
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#5
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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FLORI, BRENDA, JOY, CRISY, DEDE & STEPH
COULD YOU ALL COME OVER FOR A DRINK NEXT WEEK? I just love everything each one of you has expressed! You are so my kind of people. I am a stage 4er and understand exactly your points. Mastec., reconst., 2 rounds of chemo and the incredible side effects that brought me to my knees, barely able to speak and I see Cheryl Crowe on Larry King (who had a lumpectomy and radia -- not to be minimized and kudos to her for surviving). She points to this tiny dot that was tattoed to guide the radiol and says she has decided for the time being to keep it though it is UGLY as a reminder of her victory. Mastec and tram flap reconst, 2 out of 18 nodes removed along w/ severing muscle and nerves, 2 ports and numb areas that go from hip to hip up the left side of my torso and under my arm (sentinel nodes didn't exist in '95), a malformed armpit, a natural manmade new breast with no sensation -- what I would give for a dot or two.
Yes 4th stage met canc SURVIVERS could alter the face of cancer for the world. Instead of whispering the word, or calling it the big "c", afraid to even speak of such a horror, perhaps people would begin to see it doesn't have to be a death sentence. You don't have to condemn yourself! WE COULD ALTER THE STATISTICS MY CHANGING THE PSYCHOLOGICAL APPROACH OF CANCER PATIENTS. I believe stats reflect a mob mentality -- mass hysteria. Once you work on your mindset you're half way, no 90% there.
EVERY THOUGHT IS LIKE A PRAYER. EVERY PRAYER IS A POTENTIAL MIRACLE. WE ARE EACH A POTENTIAL MIRACLE. It's more than getting your game face on, it's about Spiritually connecting with the power we each have to control our thoughts, and thus our emotions. Emotions emanate from what we think. We our thoughts are full of triumph, we will live AS IF. As if what we want ALREADY EXISTS and all we have to do is concentrate every shred of our Energy on calling it to us! We can be the MASTERS OF OUR FATE! We each have that power.
Don't look at a 4th stager as a lost cause. THERE ARE LOTS OF OUT HERE -- ROARING...!!! With love, ANDI
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05-14-2007, 11:51 AM
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#6
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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OK, it's time to start writing a proposal for the Oprah show about Her2support.org and all of the inspirational survivors here... We need to put a face on living STRONG with chronic cancer. Like I said, I can get it to the producers, we just need to put it on paper.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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05-14-2007, 02:02 PM
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#7
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
|
Dear Oprah
Generally, in our world, that cancer word is mostly whispered, spoken of in hushed tones, or referred to as “The Big C”, or “you know”... We are scared to even speak of such an atrocity, to name it out loud. As if the very word might be contagious! And we each hand down this societal attitude, with our body language and our fear-filled references, perpetuating the fear, for future generations, making no strides in a very necessary ATTITUDE ADJUSTMENT -- we fourth stagers have all learned and discussed on our website. We do the same with our non-discussions of Death and Dying. And, in so doing -- we stack the odds against ourselves! THE TIME HAS COME TO FIX THIS CULTURAL MISTAKE THAT IS KILLING MILLIONS!
CANCER IS ALL ABOUT FEAR. And attitude! Such taboo areas perpetuate the fear and give our power away to it, thus creating ominous statistics against our survival! We fourth stage breast cancer Survivors have found this out and want to share this with the world. To shout it from the rooftops! When you become defeated psychologically by the poor statistics your thinking serves as further “proof” that the insidious disease will likely kill us. It is, in fact, a kind of MASS HYSTERIA. The collective Energy of hordes of others, whips up and exaggerates our own fear into a cyclone of emotion. We automatically emulate others’ responses, caught up in a kinetic force that produces and changes the motion and emotion of masses. The air becomes electrically charged with fear, permeating our psyches, stirring us up without our even realizing what is occurring. We scare ourselves to Death.
We've all learned to be well-informed about our disease but also to ignore statistics. WE ARE NOT STATISTICS. We are human beings. And miracles can, and do, happen. If one person has survived your kind of cancer – “YOU” CAN SURVIVE, with clear, focused intention, determination, passion, love, expectation, faith, humor and laughter, vividly positive imagery and programmed thinking of WELLNESS, HEALING AND HEALTH. Music and poetry, the embracing of the unique beauty of Nature and all Created, playing with a pet, watching a Baby or Child lost in a world all their own -- is all enchanting. And quite therapeutic. STOMPING ON FEAR!
Please help us joyful Women who refuse to give up or give in, who defy the statistics have learned to live with cancer and to thrive anyway. We appreciate each and every day as the gift it is and we celebrate it. Some days we crash. But, together, with the love and support of others, we each have decided to be a part of the forty year plan. We don't think -- WE ONLY HAVE ONE LIFE TO LIVE. We say -- WE ONLY HAVE AROUND A HUNDRED YEARS TO LEARN TO GET IT RIGHT. We see ourselves far into the future with our families. Attitude is 90% of the battle. Conquer the fear and you conquer the disease. That's the message we want to carry to the people. To share fourth stage cancer victims secrets of success and offer hope and bliss to those who come with us and will come after us.
What do you think about this for starters?
ANDI
I WASN’T SAD. I WASN’T ANGRY. I didn’t think, Why Me?! Poor me! Only the millisecond of the question, Is this how my story ends, whooshed by. Then, a brave -- NO! followed close behind. My Inner Voice spoke that NO with profound authority! I
I found myself wondering again, Is this supposed to happen?, which made me mull for a bit what that thought even meant! It was so esoteric!! YOU HAVE TO THINK THIS THROUGH, came from that Something Deep Within Me. EVERYTHING’S HAPPENING TOO FAST, DARTING AT YOU AND MIXING YOU UP, The Self That Lives Deep Within said. I couldn’t think straight, that’s for sure. My ego was seemingly knocked unconscious. It urged me to run, but again, my Inner Voice had wisely suggested that would be pointless. It had sensibly interjected this perspective, before I realized I’d even had such an inclination. STAY HERE -- LOCKED IN THE DOCTOR’S EYES, it told me. I kept fixating: It’s not a lump. I never had a lump. Never. Barbara had lumps. Lynne, Elaine, Jane had lumps. Lots of people had lumps.
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06-01-2007, 02:10 PM
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#8
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Oprah- please respond..
Whatever happened to this project? Is it something we are still interested in doing. I just came across this posting. Had no idea. I wrote to Oprah over a year ago and suggested for her producer to put a group of us together so that women-especially the newly diagnosed- know that there is hope. I have walked this road more than once, we're the face of hope, compassion, bravery, assertiveness, etc. etc. Please let me know.
We can always put together a video, this is an idea, we introduced ourselves no more than 3 minutes each., begin by stating your name, year of diagnosis, treatments, recurrences if any etc. then we will circulate the video among those who want to participate, once completed we'll send it to Oprah!!
Sisters, what do you think?? I'd love to go to Chicago and meet a lot of our sisters who live in the South, East, and Midwest,etc. what a wonderful idea.
Please respond.
__________________
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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