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07-24-2007, 04:24 PM
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#1
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Senior Member
Join Date: Jul 2007
Location: Bakersfield, CA
Posts: 38
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New to the boards
<TABLE class=tborder id=post128098 cellSpacing=0 cellPadding=6 width="100%" align=center border=0><TBODY><TR vAlign=top><TD class=alt1 id=td_post_128098 style="BORDER-RIGHT: #cc0033 1px solid">Hello all! Let me introduce myself - I am 34 and was dx last September while pregnant. I did neadjuvant chemo, 4 AC DD and then had bi lat, one node positive. ER PR negative, slightly her2 neu positive. Finished up with 6 taxol and herceptin which ended 6/18. Now I have had a recurrance in the mast site, above expander and in a supraclavicle node. My onc is going to start me in a trial for BRCA 1 positive which just opened up at Cedars- sinai in los angeles, ca. It was originally for ovarian cancer and now they just opened up for bc patients. After the trial I will probably do more chemo (xeloda and tykerb) then rads.
My question is this: this rapid recurrence is bad, but are there stories out there with people who have gone on to the NED happy place? Are neck nodes common? I also post on ysc boards and have never heard of this. Am I just one step closer to mets? I guess these are rhetorical questions because nobody knows for sure, but man am I looking for the light at the end of the tunnel and happy side of things...any input would be appreciated! Much love to all of you ladies who are fighting this disease and helping all us newbies out.
I think I got my signature up. Thanks again.
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__________________
 Age 33 at dx - 9/15/06
L breast, Invasive solid DC w/ extensive DCIS, Grade 3, ER/PR negative/ HER2 neu positive (barely)
-AC DD, taxotere, taxol w/ herceptin
-Bi lat 1/18/07, multiple foci of IDC admixed with DCIS, IDC varied from 0.1, 0.5, and up to 1.6 cm, 1/19 + nodes
Expanders in place
Pregnant when dx
Mom to 4 beautiful kiddos (boys: 5 and 14 mos, girls: 17 and 3)
Recurrence in neck lymph node and 8mm spot in L breast above expander, herceptin stopped
BRCA 1 positive
Clinical trial since 7/23/07 (PARP INHIBITOR)-NED for 9 months, supraclavicle node popped back up,..so we cut it out! Full neck dissection - only 1 positive node ER/PR negative and now HER2 negative
Currently on Xeloda and NED
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07-24-2007, 04:55 PM
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#2
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Senior Member
Join Date: Mar 2006
Posts: 1,843
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Please excuse this post if you have "done" diet, but I would rather your ire than you not have the opportunity to add this to your knowledge.
If you brain is not too numb this thread gives a sense of the importance of diet.
http://her2support.org/vbulletin/sho...ght=greek+diet
There is a lot of evidence that fat intake (type) plays a large part in the risk profile for breast cancer (and other conditions).
Women with high long chain omega threes in breast tissue had about a 70% lower risk than those with low DHA and EPA.
Babies demand DHA from the mother to make their brains etc. IF the mother has insufficient supplies they will even hoover it from the mothers brain. Womens brains can shrink in pregnancy. It gets a little worse with each pregnancy if Omega threes DHA etc is not replaced.
Balancing the omega threes and sixes is arguably a good target.
Fish oil is a good source of DHA and long chain omega threes. Watch cod liver as it is also high in A and D. A trial suggested women's uptake drops off at about 2 grams a day.
There are lots of posts on omega threes and sixes you can search by clicking on search above. (it took me a while to find it and hence the tip).
The mother omega threes can be found in flax oil or seed (oil or seed is another topic of debate)
Fats are powerful so please ensure you discuss supplementation with your medical advisor. Fish oil can cause blood thinning.
http://www.ncbi.nlm.nih.gov/
You can use this to search for DHA EPA etc with your treatment regime print out the result and take it along for consultations etc.
Please come back if you need more resources, or scream done that.
I so admire your courage.
RB |
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07-24-2007, 08:40 PM
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#3
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Welcome Swanky, although sorry that you are going through this. This is a terrific site to get great and updated information from knowledgable people. Many women who have had recurrence and are many years out doing fine! Hang in there sweetie!
Hugs,
Lexi
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07-24-2007, 09:33 PM
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#4
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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You made ME laugh...I like you already
I know, nothing to really laugh about, but I liked your comment about kids not minding bald, etc. Oy, you have a lot of kids in your house. (I have a 17 & 19 year old).
My advise, stay tough - listen to RB...I am seeing a doc at UCLA, if you can, try to get in to see Dr Kenneth Conklin. He's an MD who specializes in supplemental support for women in treatment for BR CA. He works out of their Integrative Oncology Dept.
Stay strong. You found one hell of a support site here. I've been posting for 3 months and have found this to be not just supportive, but there are many with brilliant research minds.
I don't have the answers to your questions but I was in hot water more than once and things turned around. I was determined to raise my kids and I did. I am now determined to get my youngest settled in college this fall and I will.
My "team" is at Cedars, too. I've been at this a LONG time, so if I can help you in any way let me know. Blessings...Flori
__________________
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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07-24-2007, 10:43 PM
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#5
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Swanky, I am also new here and the warm welcome everyone offered was amazing. You might not find all the answers but you will find people who will share their experience strength and hope with you.
Keep the faith...Bonnie
__________________
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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07-25-2007, 12:12 AM
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#6
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Senior Member
Join Date: Mar 2006
Posts: 1,843
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Swanky - I am sorry I should have said hello. I am afraid I was kind of overwhelmed and did not know what to say. Your post still brings a silent tear this morning for your your children family and life's injustices.
Thank you for your kind comment Flori.
RB
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07-25-2007, 06:10 AM
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#7
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Welcome Swanky....believe it or not this is THE SWANKY place to be for women or men with breast cancer...especially if you are in the Her2 club. Sorry you had to become a member, but you will find a wealth of information from first hand experience here. I began having a problem with a recurrence in my neck nodes during my reconstruction 1 year after my diagnosis. A biopsy confirmed it was the breast cancer, her2+ back again...(I started as Stage 1, neg nodes). Well I began Herceptin then, and that was 4 years ago...since then, I have had a few more recurrences to the same spot. I was on Xeloda Herceptin for a year, and just switched to Taxol, Avastin, Herceptin, which is also kicking butt on the nodes. Something about the neck nodes...they can be a pain in the butt. They just seem to have a mind of their own, and keep coming back. Lolly on this site also has had problems with them for years. I loved your comment, kids like bald but no stuble....please let us know what the plan of attack will be for your nodes....they may even try radiation.
__________________
"Be kinder than necessary, for everyone you meet 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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07-25-2007, 08:21 AM
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#8
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Welcome, Swanky!!! You have come to the right place! I do not have answers to your questions, but I can tell you that I come here first to ask my questions...and then call my oncologist!!!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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07-25-2007, 08:41 AM
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#9
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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welcome
again sorry that you have to be here, but this is THE place. I also just want to babysit my grandbabies someday!!! I hope Lolly posts to you as she has experience with dumb nodes. But you can search her posts or search nodes and NED and I think you will find some encouragement. Sheila is another gal who comes to mind-these are AMAZING women-so look for them.
Keep us posted!
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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07-25-2007, 08:48 AM
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#10
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Hi Swanky - welcome to the Jr Oncologists League!! LOL. All of us here could probably pass some kind of medical exam thanks to all we have learned on this board, and due to how it has inspired us to learn more and contribute... Stay tuned, someone here will always have an idea for you to pursue! Best of luck.
__________________
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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07-25-2007, 09:40 AM
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#11
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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A Warm Welcome
Welcome Swanky,
It's so nice to have you as part of our board. I'm sorry you were diagnosed with breast cancer but I'm happy you found this board. You will find many of the women and men of this board very, very knowledgeable in her2 breast cancer, diet and other things. I feel blessed to be a part of this board. I've been strengthened and encouraged more times than I can count (I've learned a thing or two as well  ).
Soooooooooooooo................welcome and a cyber hug I extend to you.
May God's Peace surround you today,
Mary Jo
__________________
"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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07-25-2007, 10:01 AM
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#12
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Welcome Swanky
Welcome to the best place you can be for support, it is not the site for just negative imput as one may normally want to think. It is my husband who has stage IV Breast Cancer not me, but I have found the greatest support system here. Not only do we get educated, but we get silly too. Sorry you have to be here, sorry we all have to, but thank God we can come to a place that provides information, links, inspiration, life lessons, family stories, laughter and tears.
I consider these wonderful Angel Warriors our extended family and could never be the educated seasoned caregiver that I am today without their support.
Ask anything or mention anything to us all here, nothing you can say will shock us. We talk about anything and everything and shall care for you unconditionally. If you speak about something and the post falls behind others someone here will either respond with an answer or write something of support so the post stays alive.
I am wishing you and your family the best of luck on this journey. Keep the faith and sweetheart............never stop BELIEVING!!!! We are all here wishing and praying for the same things.
Waiting For A Miracle....and expecting one soon>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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07-25-2007, 11:43 AM
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#13
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Guest
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Swanky--just want to add my welcome. There are some very knowledgeable women on the board and they've kept me from going into a panic on a number of occasions and lots of others on the board as well. It's like having your own college of physicians.
Good time now to say thank you to all who have pulled me through dizziness, urinary track infections, nausea, cough, and much more, and all with great advice on what to eat after cancer.
So thanks all and, again, welcome!
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07-25-2007, 05:13 PM
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#14
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Swanky
You are at the right place. This is the best support group and the
smartest, bravest people you will ever talk to. It is a life saver when
you have questions or just can't sleep. Take care.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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07-25-2007, 06:42 PM
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#15
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Welcome....
you have found a wonderful home here!
I am with you on those Grandchildren!
Please keep us updated on your treatment and I send you
all good wishes and prayers.
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
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07-25-2007, 09:35 PM
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#16
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Member
Join Date: Jun 2007
Location: Lake Oswego, OR
Posts: 14
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Hi Swanky--
It's like running into you at Target to see you on a different board. Hope you get the answers you are looking for.
xo
cary
__________________
DX @ 34, Oct 2006
IDC, grade 3, Stage III
ER+ PR- Her2+++
9 nodes +
DD AC/T
Tried lumpectomy 2x Failed
Bilateral Mastectomy 3/07
Radiation 33x
Lupron + Tamoxifen for 3 months
Herceptin started 6/07
Ooph + Femara 7/07
Zometa
Neratinib Trial 1/10
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07-26-2007, 06:04 AM
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#17
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Senior Member
Join Date: Aug 2006
Location: Poland Ohio just a little south of Youngstown.
Posts: 473
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Hi Swankey, Just wanted to post my welcome to you. As everyone else says, this is the place to be. I believe I get more info from this board and these wonderful people than I get anywhere else. Whenever you have a question or just need to vent, just come here. You are not alone.
Hugs
__________________
Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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07-26-2007, 05:26 PM
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#18
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Senior Member
Join Date: Jul 2007
Location: Bakersfield, CA
Posts: 38
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Ladies - thanks for the warm welcome. The trial I am about to start officially begins tomorrow, so I will pick up my pills on Monday. My Onc seems pretty excited about it, so I have my fingers crossed.
Another question - I see some woman have been staged at IV because of mets to the neck nodes??? My onc calls this a local recurrence and not stage IV. However, I guess this is semantics and some say tomato, while others say tomahhhhto. LOL
Anyways...I plan on kicking the you-know-what out of this beast. Lots of things in the arsenal to try.
Cary - LOL!!! Yes, very much like Target!
Flori - You go to cedars too? My onc is Sarna, and Silberman did my bi lat - I am going to alsk him for a refund when I see him again! :-)
Well thanks again for the welcome and how do you get the pic to the side?
Leea
__________________
Age 33 at dx - 9/15/06
L breast, Invasive solid DC w/ extensive DCIS, Grade 3, ER/PR negative/ HER2 neu positive (barely)
-AC DD, taxotere, taxol w/ herceptin
-Bi lat 1/18/07, multiple foci of IDC admixed with DCIS, IDC varied from 0.1, 0.5, and up to 1.6 cm, 1/19 + nodes
Expanders in place
Pregnant when dx
Mom to 4 beautiful kiddos (boys: 5 and 14 mos, girls: 17 and 3)
Recurrence in neck lymph node and 8mm spot in L breast above expander, herceptin stopped
BRCA 1 positive
Clinical trial since 7/23/07 (PARP INHIBITOR)-NED for 9 months, supraclavicle node popped back up,..so we cut it out! Full neck dissection - only 1 positive node ER/PR negative and now HER2 negative
Currently on Xeloda and NED
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07-26-2007, 08:21 PM
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#19
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Hi there, not sure about mets or not. I would think the node activity has kicked your stage up a notch to 2B or 3 something. I know there is a discussion on this board, so find the purple tool bar at top of page and click search and enter staging.
RE photo, you could again go to search and enter photo. I know is it has been discussed and you enter thru the CP user tool. If you get impatient you can email Joe the webmaster.
I'm hoping you have great results with your new treeatment. Bev
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07-27-2007, 08:51 AM
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#20
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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I love Allan
Just for the record - Dr Silberman saved my life. I think he is one of the most gifted and intuitive surgeons around. He was given a chair last year and is working on cancer research. For me, I feel safe with him because he is thorough and an uber control freak so I can breathe out when he's around, in charge. Also, David Kulber is my plastic fantastic another great surgeon...I had a 2nd opinion w/Sarna. He has an excellent reputation. My onc is Van Scoy Mosher. I've been at Cedars for 11 years, wish they would have cured me by now, but they've kept me alive...Really, we are all very lucky to have access to great medical care. Take good care!
Flori
__________________
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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