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Article by one of our members

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05-20-2011, 12:13 PM	#1
Jackie07 Senior Member Join Date: Jan 2008 Location: "Love never fails." Posts: 5,808	Article by one of our members Just saw this very nice article posted on Kevin MD by one of our members. I don't remember her name on this Forum, but I do remember her logo "But doctor, I hate pink..." http://www.kevinmd.com/blog/2011/05/...-identity.html __________________ 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; 05-24-2011 at 09:26 PM..

05-21-2011, 03:32 AM	#2
pibikay Senior Member Join Date: May 2010 Posts: 432	Re: Article by one of our members Very touching article __________________ PBK huband of Hema Metstatic Breast Cancer Stage 4 Left breast cauliflower 25x20cm ossousmetstatis in vertbrae secondaries L4=L5secondary nodules in both liver lobes secondary Diagnosed 10th March 2010 ER/PR-ve Her 2 neu +++ Taxotrne Zylotec started 16th March Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin

05-22-2011, 06:29 AM	#3
Jean Senior Member Join Date: Oct 2005 Location: New Jersey Posts: 3,154	Re: Article by one of our members Jackie....Big Thanks...enjoyed this article so much. It really shouts out all good things to consider. How often we read posts here speaking of the concern of the cancer returning and how to deal with it...and when the worry end? This article puts a strong touch to the concern. I am sure it will be read by many who will get so much from it. Jean __________________ 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

05-24-2011, 07:10 PM	#4
SoCalGal Senior Member Join Date: Apr 2007 Location: LA LA Land Posts: 1,607	Re: Article by one of our members Love this article! __________________ 1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED. 2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading. 2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins. ‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED. ‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time. 1/2006 Rads again, to scar line. NED. 3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs. 12/07 Herceptin.Tykerb. Markers go stable. 2/8/08 gamma knife 13mm stupid brain met. 3/08 Herceptin/tykerb/avastin/zometa. 3/09 brain NED. Lungs STABLE. 4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS) 9/09 MARKERS normal! 3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead. Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA Dec 2010 Brain NED, lungs/sternum stable. markers normal. MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva. May-Aug 2011 Tykerb Herceptin Xgeva. Sept 2011 Tykerb, Herceptin, Zometa, Avastin. April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED! OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa. 12/20/12 add in PERJETA! March 2013 – 5 YEARS POST continue HAPZ APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13 May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer. June-August 2013HAPX Herceptin Avastin Perjeta xgeva. Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months. Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort) December '13 BRAIN MRI ned in da head. Jan 2014: CONTINUING on HAPX… FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8 3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13) 4. scattered lung nodules, up to 5mm in size = stable, no increased activity 5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX! October 2014: hold avastin, continue HPX Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis. Continue HPX. Adding back Avastin Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1 December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva. Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :(( Markers drop post rads. 2/24/16 HAP plus X - markers are down SCIATIC PAIN DEAL BREAKER. 3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing. APRIL 2016 - 9 YRS MBC July 2016 - continue HAP plus Xgeva. DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva APRIL 2017 10 YEARS MBC December 2017 - Progression - gonna switch it up FEB 2018 - Kadcyla 3 cycles ---->progression :( MAY30th - bronchoscopy, w/foundation1 - her2 enriched Aug 27, 2018 - start clinical trial ZW25 JAN 2019 - ZW25 seems to be keeping me stable APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC MAY 2019 - progression back on herceptin add xeloda JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met 10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me. 12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful. 10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.

05-24-2011, 08:03 PM	#5
CoolBreeze Senior Member Join Date: Dec 2009 Posts: 562	Re: Article by one of our members Hey, that's me. I came in to ask a question but see very nice comments on my post on KevinMD. I appreciate it. __________________ http://butdoctorihatepink.com 08/17/09 Dx'd. Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS HER2+ ER+/PR- Grade 3, Node Negative 10/20/2009: Right mastectomy, reconstruction with TE 12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy 03/31/2010: Finished chemo 05/01/2010: Began tamoxifen, the worst drug ever 11/18/2010: Reconstruction completed 12/02/2010: Finished herceptin 05/21/2011: Liver Mets. Quit Tamoxifen 06/22/2011: Navelbine/Zometa/Herceptin 10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure! 11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years" 03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa 10/10/2012: Progression continues, started Halaven, along with herceptin and zometa. 01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa 03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta. 04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success! 05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo. 06/07/2013: Fiducial placement for SBRT 07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone 07/25/2013: SBRT (gamma knife) begins 08/01/2013: SBRT completed 08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa 06/18/2014: *** NED!!!!*** continuing with Perjeta, Herceptin, Zometa 01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly. 11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted. 5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean. I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.

05-25-2011, 06:05 AM	#6
schoolteacher Senior Member Join Date: Feb 2008 Location: Georgia Posts: 1,486	Re: Article by one of our members Thanks for the article CoolBreeze and Jackie. Amelia

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