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01-24-2013, 07:43 PM
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#21
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: Pain? yes Appt? yes Relief? ????
You cannot keep a good woman down!! Hope all goes amazingly well for the surgery Denise.
Thinking of you, and sending you a big pain-free hug!
Cheers Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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01-24-2013, 10:02 PM
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#22
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Pain? yes Appt? yes Relief? ????
Will be thinking of/praying for you tomorrow. Be aware that the pain threshhold (after the surgery - in the recovery room)might be different this time.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
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
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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
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01-24-2013, 10:34 PM
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#23
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Senior Member
Join Date: Jul 2012
Location: Utah
Posts: 124
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Re: Pain? yes Appt? yes Relief? ????
Praying that surgery is a total success and that you have a quick recovery. Those chocolates will taste so good!
Let us know how it goes~
Jeri
__________________
Diagnosed 16Dec1993 ITP (auto immune disease - low platelets)
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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01-24-2013, 11:03 PM
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#24
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Pain? yes Appt? yes Relief? ????
Happy to know your pain is now MANAGED!
And your surgery will be over by the time I am having my breakie tomorrow morning.
My very best wishes coming your way for a skilled surgeon with a steady hand to do the amazing work to bring you back to a normal life.
(Mine is not yet quite normal, but gets better as time goes by!)
__________________
"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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01-25-2013, 05:10 AM
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#25
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Senior Member
Join Date: Jul 2011
Posts: 954
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Re: Pain? yes Appt? yes Relief? ????
Denise,
I'm glad to hear that God answered our prayers to get you the help you needed with the surgery scheduled quickly. I hope you feel much better real soon.
Paula
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01-25-2013, 07:50 AM
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#26
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Senior Member
Join Date: Mar 2011
Location: Pittsburgh, PA.
Posts: 260
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Re: Pain? yes Appt? yes Relief? ????
Praying that your surgery went well and you will soon be pain free!
__________________
11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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01-25-2013, 02:09 PM
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#27
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: Pain? yes Appt? yes Relief? ????
Today is the day! Im sending lots of positive thoughts and prayers. Im so happy they got you scheduled so quickly, and you will be on the road to recovery. Also, so thankful they got your pain under control, and you are not suffering with that anymore. Yay! 
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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01-26-2013, 06:48 AM
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#28
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: Pain? yes Appt? yes Relief? ????
Good morning, Denise. Lots and lots of prayers have been sent. Hope you are feeling better and will soon be on your feet and feeling fiesty! A friend told me that his post surgical pain was so much less than what he had experienced before the operation, that it was downright strange.....Hope the same is true for you, and you will soon be resting and recuperating at home. Gentle hugs.
Barb A.
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01-26-2013, 12:05 PM
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#29
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Senior Member
Join Date: Jan 2013
Location: Irvine, CA (Southern CA)
Posts: 414
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Re: Pain? yes Appt? yes Relief? ????
Denise, by time you get this you'll be out of surgery and on your way to healing! I'm sure you'll have the relief that Barb described above. Looking forward to having someone to play scrabble with again soon!
-Julie
__________________
Julie
Live in Orange County, CA
Diagnosed with DCIS Oct. 2012
Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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01-26-2013, 07:36 PM
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#30
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: Pain? yes Appt? yes Relief? ????
Denise,
Hope all went well and you are on the road to recovery!
Prayers still going!
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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01-26-2013, 09:07 PM
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#31
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Pain? yes Appt? yes Relief? ????
Praying ever so hard that you are able to post soon with a positive attitude and out come. Gods blessings are all around you. Peace my friend
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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01-26-2013, 09:14 PM
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#32
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Senior Member
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
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Re: Pain? yes Appt? yes Relief? ????
Denise, Oh I'm sorry to hear that.  I've been there and my husband has too (he had to have 3 vertabrae fushed together). Damn- I know the suffering from back pain can be so unbelievably unbearable. My heart goes out to you. I hope and pray for prompt pain relief for you and that they are able to help resolve your pain!!! Denise, Please let's us know how it went.
Thank You My Dear Loving God, I pray in your name Jesus Christ. Please hear my prayer. Please have mercy and lay your healing hands on our sister Denise. I pray for your mercy of those sick, suffering with mind and body pain and all of us here stricken with cancer, and I pray for peace in this world and your miracles! Amen!
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.
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01-27-2013, 03:49 PM
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#33
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Senior Member
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
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Re: Pain? yes Appt? yes Relief? ????
How are you going Denise? Thinking about you
Dawn
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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01-27-2013, 06:59 PM
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#34
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Pain? yes Appt? yes Relief? ????
Hello Friends!
I'm feeling much, MUCH better today!
The surgery was on Thursday...pushed a day earlier because of the pain levels, that drugs were barely touching. Intractable pain is what they called it.
From the time I arrive at the hospital on Wednesday, until the surgery was complete on Thursday, I was treated like a queen...a drugged up queen, in a lot of pain, but a queen, just the same.
Then...and those of you who have known me for a while will not be at all surprised by what happened next.
I came out of anesthesia,
intubation tube was removed,
I was wheeled into recovery...
was spoken to briefly by someone who was clearly not old enough to shave but who was expert enough in the practice of neurosurgery, to decide if I was going to be okay.
This fine young man said everything went fine. He told the "workers" in post-op that I could return to my room, and that I could have ice or juice whenever I wanted it.
Good deal, right?! That was at 5:17. One of the post-op minions gave me a tiny medicine cup - smaller than a shot glass - with exactly 4 pea sized pieces of ice in it.
They parked me by the door to the soiled laundry room - no, you didn't read that wrong - and no one came back to check on me until I heard someone say it was 6:50, and they were going to order their pizza for dinner. They were having trouble deciding between pepperoni and sausage. I hadn't eaten a thing in 18 hours at that point...and the 4 tiny chip of ice were a distant memory.
I asked someone for more ice or some water - at this point, my teeth were actually stuck to my lips, and talking was painful. "You're next, we're waiting for transport to come get you." I could really use a drink, I replied, my mouth and tongue are sore.
"You're fine", she said, "you still have most of a bag of fluid hanging."
It was then that I looked at my arm and noticed that while there was an IV line in my arm...there waddn't shit running into it!
No fluid...because I've been battleing low blood pressure,
no antibiotics for the bladder infection,
and NO, I repeat, NO PAIN meds at all.
It had been 2 hours since my 3 hour spinal surgery and I had yet to get any pain medicine.
I looked around the room, and realized that except for the staff members trying to decide what to order from Pizza Hut I was the only one there...
clearly they were NOT rushed off their feet!
Ladies and gentlemen of the jury, it was then that something inside me snapped. Even with all the untreated pain I was feeling...
I sat bolt upright and announced in a rather determined tone of voice:
Excuse me everyone, I think I've gained just about all I can from my view of the soiled laundry room. It would probably be best if one of you would find me a wheelchair, so I can transport myself to my hospital room. I'll just be removing these IVs and monitors while you work on that.
Sadly, it was then that one of those post-op worker bees set down her 32 ounce Pepsi...with LOTs of ice in it, to come running to stop the lunatic patient (That would have been me in her view)
My state of extreme dehydration, coupled with that beautiful sloshing ice sound was a very bad combo.
Then, not knowing with whom they were dealing...they all adopted what I'm sure were intended to be calming tones, but telling me to stay calm when I am perfectly justified in my fury...OH MAN!!
Fortunately for their bodies, and for my perfectly clean criminal record, I was too weak to do much more that say loud things about my perceived mistreatment at their hands.
Then, my whole body started to shake, and I realized, I was crying, but I was too dehydrated for tears to form.
I don't remember who finally got me to lay down and wheeled me back to my room - she was dressed in OR garb not Post op. What I do know is that the nurses, CNAs Food service staff, maintenance, PT, OT on my floor...all checked in on me several time over the next day or two. "How could anyone treat their Denise" that way! Very sweet! (Boy does a good story travel through a hospital in a hurry!)
And the neurosurgeon, when he came to see me about my "entire experience" - that's how they always ask here...YIKES!
What they want to hear is something like"seamless", "couldn't have been better", "your team is certainly top notch".
Clearly, that was not the case. I didn't have the names of any of the people who were slackers and caused the problem...he says he can easily track that down himself...but I did make a point of telling him the names of every person who took exceptional care of me...because there have been many.
If you didn't laugh when you read this because you were feeling bad for me...go back and read it with the knowledge that it all turned out fine, and the part where I tell them to get me a wheelchair cause the IVs are comin' out...I wish I had video of those faces when they realized just how much trouble their poor treatment of me could end up causing. I bet they didn't enjoy that pizza as much as they thought they would!!
Thanks for checking in on me!
Still having pain, but nothing like I had before the surgery. And...I'm pretty sure I get to go home tomorrow!
Love to all of you!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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01-27-2013, 07:30 PM
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#35
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Senior Member
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
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Re: Pain? yes Appt? yes Relief? ????
Oh Denise!!!!
What a day! Yes, I was feeling bad for you, but you are right, everything turned out well, so ll you can do is laugh! Fancy leaving you with a view of the laundry room, with no medication, or water for hours, whilst they debate their pizza toppings! WTH?
You are a funny lady, Denise, you always have a goo d story to tell. I'm so glad you are feeling ok, and will be home soon. If you can get out the hospital now that is, they may be trying to make up for it now, keeping you in with extra special care!
Take it easy my friend x
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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01-27-2013, 09:45 PM
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#36
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Senior Member
Join Date: Jul 2010
Location: South Jersey
Posts: 516
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Re: Pain? yes Appt? yes Relief? ????
Oh, man. Was this at UPenn? I'm so disappointed in them. Disgraceful.
__________________
...but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. (2 Corinthians 12:9)
Penny
July 2010 IDC grade 3 stage 3 er-/pr-/her2+++, BRCA2
Skin mets 11/10
1/12/11 Surgery path - complete response
Rads 2/11-4/11
Liver mets 11/11 now stage IV
Xeloda & Tykerb 12/11
Allergic reaction to Tykerb 12/11
Xeloda only 12/11
Added herceptin January 2012
Progression February 2012.
Started Veliparib (parp inhibitor) trial 3/5/12.
4/30/12 Liver met shrunk in half! Praise Jesus!
6/18/12 another 25% shrinkage, down to @3x3. Thank you, God!
8/8/12 Brain MRI - clear! Praise to You, Lord Jesus Christ!
8/27/12 Thank You, God - another 20% decrease in liver met! Now @ 3.2x1.9.
10/5/12 stable-ish
11/21/12 allergic reaction to carboplatin
12/10/12 stable & progression
12/31/12 liver ablation
2/6/13 ablation successful but new tiny mets in liver. May or not be cancer.
Another ablation scheduled 2/28/13. Cancelled.
2/20/13 started taxotere & herceptin. Pretty toxic. Oncologist says start tdm1 4/3/13. From her lips to God's ears. Praying for no allergic reactions/adverse side effects.
3/28/13 increase in liver mets - number & size
4/3/13 started TDM1
6/25/13 Praise God! Scan shows only one viable lesion and it's smaller.
10/8/13 MRI shows 1 large and two small tumors.
10/11/13 Ablation of tumors. It's in God's Hands.
10/23/13 Jesus and TDM1
12/19/13 Started trial of palbociclib & herceptin after scan showed growth of liver tumor and a questionable spot on rib.
2/6/14 CT scan - previous suspicious spot on rib probably damage from radiation - Praise God! MRI - over 200% growth in cancer in liver.
2/19/14 started Navelbine, Perjeta, & Herceptin combo.
5/2-5/4/14 hospitalized with very high liver function numbers, plus skin and eyes are yellow, plus urine is orange. Feel ok, so doctor not sure if liver failing due to cancer, chemo, or infection. Hospital gets numbers to go down and sends me home. MRI done in hospital reveals cancer shrinking - praise God!
5/6/14 - 5/8/14 hospitalized with no white blood cell count. Released when they go back up, @ 6 days after doctor gave me a neulasta shot.
5/16/14 - informed blood cultures done in hospital are back and that I contracted hepatitis e. Have to take ribavirin (anti-hep med) until liver function numbers are back to "normal" before re-starting chemo. Will probably go on veliparib and temodar this time.
5/26/14 - my birthday - GI doctor informed me that the hepatitis e was completely gone - I didn't even need the anti-viral meds! This is a miracle from God!
5/28/14 - started veliparib and temodar (compassionate use)
8/18/14 MRI shows 90% growth in liver tumors
8/20/14 start Perjeta, Herceptin, & Navelbine. Thanking & giving Glory to God for each moment.
9/22/14 - 9/24/14 Hospitalized with 102.2 fever and neutropenia
11/13/14 ER for high fever and fast heart rate. Got both down with IV antibiotic and fluids. Sent home same night. Thank You, Lord!
12/2/14 MRI shows progression in liver. Grateful to God that I still feel good.
12/11/14 Simulated SIR-spheres. Successful. Real thing (1st lobe) scheduled for the 23rd. Also starting Xeloda on 22nd for 2 weeks because it's synergistic with the spheres.
12/23/14 SIR-spheres in left lobe of liver. On Xeloda 12/22/14 - 1/4/15.
1/7/15 Receiving Perjeta & Herceptin while awaiting next course of action.
2/9/15 SIR-spheres in right lobe of liver. On Xeloda for 2 weeks (started 2/8). Still on Perjeta & Herceptin. Don't know what's next for me. :-)
3/25/15 Final read on MRI report - there are new and multiple lesions in both lobes of liver. Sigh. Praise God I've made it this far!
4/1/15 Started Gemzar & Herceptin. 1st week G&H, 2nd week G only, 3rd week off. Thank You, Lord, for this option.
4/15/15 Labcorp - liver enzymes in 200's. Appointment 4/22 with oncologist to discuss. Also, "radiation recall" in previously treated area? Very itchy. Need to discuss.
4/22/15 Enzymes came down. Received reduced dose of Gemzar only. No herceptin. Will get labs at lapcorp next two weeks since taking break for vacation purposes. Treat radiation area.
5/9/15 ER for severe abdominal pain. Constipation. Sent home with meds and advice to follow up with oncologist regarding jaundice and bilirubin.
5/11/15 Hospitalized for rising bilirubin and jaundice. CT scan reveals larger and more constricting tumors in liver.
5/13/15 Met with my oncologist. Bilirubin came down. If still down by Monday, I'll get chemo. If not, than I guess I'll see you all in Heaven. Praise God. Please pray, pray, pray.
5/18/15 Bilirubin jumped up. Trying lowered dose of Ixempra, with Herceptin. Oncologist is surprised that I'm functioning so well, given the high bilirubin. I have anywhere from 2 weeks - 2 months to live.
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01-27-2013, 10:13 PM
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#37
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Pain? yes Appt? yes Relief? ????
I CAN NOT BELIEVE THAT! The hospital staff is NEVER supposed to leave a just-recovered-from-surgery patient unattended!
Having had the same recent surgery, I am shocked! That staff was completely negligent, and it is not one bit funny. You were starting to have complications and needed attention. They should have never taken you out of recovery until you were either going home or directly to a room.
I can't stop shaking my head ...
You were right to give the riot act to the physician. That place could be in big trouble.
On a brighter note, I am so glad you are feeling better and in much LESS pain.
__________________
"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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01-28-2013, 01:48 AM
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#38
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Pain? yes Appt? yes Relief? ????
O Denise, that was aweful! I'm so sorry about your odeal.
Thought my experience after hysterectomy/oophorectomy three years ago was bad enough (terrible pain in the recovery room because my tolerance of pain medicine and then late at night a staff attempted to put the blood pressure cuff on my right arm where 11 lymphnodes had been out and I'd experienced lymphedema!)
Those staff must have thought you were still under the influence of Anesthetics and they could just sneak off... [A nurse had told me some personal stuff during my rehabilitation after the brain (tumor) surgery in 1990. When I mentioned it (asked about her 'Oriental' daughter-in-law) a year later at the 'reunion', she turned to my husband and said: "You watch her! She doesn't forget anything!"]
I also had been left alone by a young 'boy' (probably a high school student volunteer) after he had pushed my wheelchair to the 'wrong' station unattended. Susan, my PT, 'fetched' me about five minutes later. From her pale face I realized what a big deal it must have been for them to have a patient 'missing'...
But the IV part was inexcusable...
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
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
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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; 01-28-2013 at 02:02 AM..
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01-28-2013, 08:14 AM
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#39
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Senior Member
Join Date: May 2011
Location: Gloucester City, NJ
Posts: 73
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Re: Pain? yes Appt? yes Relief? ????
Denise,
So sorry for all the mistreatment you had to endure. Very glad you are feeling better and on the road to recovery.
__________________
Baseline Mammogram November 2010, found 2 suspicious calcifications (right side).
Second Mammogram April 2011, found 2 masses in the right breast, 1 in the lymph node and 1 in the left breast.
3 Biopsies May 11, 2011
Diagnosed right Invasive Ductal Breast Cancer which spread to my lymph node 5-13-2011.
Between Stage 2 and 3 with tumors grade III. ER/PR- but Her2neu+++
PET Scan clear
Breast MRI showed 2 masses in left, 5 in the right and 2 in the lymph node.
Biopsy of left mass benign
Joined clinical trial which required second biopsy of one of the right masses
Port placed May 27, 2011
Began Chemo (Taxol, Herceptin and Tykerb) on June 1, 2011 - September 12, 2011
Bi-lateral Mastectomy with reconstruction (expanders) October 3, 2011
FEC 12 weeks
Radiation 6 weeks
Herceptin 8 months finish September 2012
Exchange surgery August 3, 2012
Been NED since October 2011
Lymphedema right arm since Nov 2013
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01-28-2013, 10:07 AM
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#40
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Pain? yes Appt? yes Relief? ????
Hi Denise,
So good to hear your pain is under control. I saw your message too late to suggest finding a friend with an RV, who can transport you in a horizontal position.
I once pulled a muscle in the mountains in Switzerland which developed into an infection. Until then, I'd never ever felt such excruciating pain (I learnt that childbirth can be worse, since, but that's another story). My boyfriend and I had a van, and he put a mattress in it & drove me back to the Netherlands (900 Miles, the first 150 through the mountains). I think if I had known in advance how painful that would be, I'd have screamed for euthanasia.
You are a real trooper to have done the 45 minute trip without killing your sister or the doctor or both.
Love
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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