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Old 04-01-2008, 11:44 AM   #1
BethC
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Location: Carmel, Indiana
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Radiation question

I have finished 14/30 of my radiation treatments. So far, I don't have any skin issues. I was wondering when that usually starts to happen?
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DX 9-19-07 at age 40
DCIS, Inv. Duct. Car. 3 cm
Positive lymph node biopsy
Er+Pr+Her+++
Carboplatin/Taxotere/Herceptin
10-1-07 -- 1-16-08
Herceptin every 3 weeks until 9/24/08
Lump. and node dissection 2-12-08
BRCA1 and 2 negative
30 rads finished 4-23-08
oophorectomy 5-6-08
Femara started 5/25/08
Zometa for osteoporosis every 6 mo. started 9-24-08

Married 16 years!
3 kids - daughter (10), twin sons (7)
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Old 04-01-2008, 01:35 PM   #2
Yorkiegirl
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Beth I know with me I had skin isues during the last week, but able to finish my rad's on schedule.
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Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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Old 04-01-2008, 03:50 PM   #3
SoCalGal
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Location: LA LA Land
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Hi -
It was towards the end of the rad treatment. The first time I had severe probs and even so I got up and got dressed and worked thru it all and only used tylenol for the discomfort. The second time (10 years later) I had virtually no skin probs - just some redness the last week. The "tan" line from radiation can take a long time to fade but eventually will. I was always careful to not expose that area to the sun and I used some kind of lanolin cream that the nurses gave me as a soothing agent. Don't worry - it will all pass!
Flori
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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.
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Old 04-01-2008, 04:04 PM   #4
goops
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I had burns after two weeks - if you are done and have had no skin issues you are doing great.
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May 2007 - Stage 3A, 12 positive nodes, her2 positive
July 2008 - Stage 4 - Liver Mets

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Old 04-01-2008, 04:30 PM   #5
Joan M
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Beth,

I had six weeks of radiation and my skin started to breakdown in the fifth week.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 04-01-2008, 04:44 PM   #6
Bill
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Beth, with Nicola, my wife, it was towards the end of treatments. I hope you are using some kind of radiation cream and drinking plenty of water. Thoughts and prayers, Bill
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Old 04-01-2008, 04:53 PM   #7
Sherryg683
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Mine was around the last week of treatment. It wasn't that bad though, like a sunburn. My little girl would rub creams on me everynight so maybe that helped..sherryg683
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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 04-01-2008, 05:28 PM   #8
chicagoetc
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Location: Near Chicago
Posts: 196
I'm at day #17 and just beginning to notice some minor issues...area under arm was a tad red and now looks darker. Skin in general is warmer on the one side than the other. Also, there's some beginning tightness where I had surgery. I'm beginning to use some cream they supplied...and also to do stretching exercises to see if it helps with the skin tightness. I suspect this is different for everyone. From everything I hear the end is harder (but not as hard as everything chemo-wise that came before).

Melanie

PS: I just started an almost identical thread on this topic, probably yesterday...!
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Diagnosed: 7/13/07 (or 7/7/07)
Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
Lymphedema Rehab 9/10/10 - 11/10/10
Six years NED...7/7/2013!
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