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Old 07-25-2014, 07:45 AM   #1
eva9310
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Posts: 27
Hand Slapped by my surgical oncologist 😡

I have a medical oncologist and surgical oncologist on my team at MD Anderson. I'm doing ac x 4 every three weeks almost done with that then perjeta, taxol, & herceptin for 12 weeks then surgery then herceptin for 9 months every three weeks.

I'm almost done with my AC and went to a consultation with a plastic surgeon that has come highly recommended.

My surgical oncologist pretty much called me and chewed me out. I guess she doesn't think I need to be interviewing or picking my own plastic surgeon and that I would just fall in line and see who she told me too.

Then she said (without even seeing my response to chemo) that her plan is to take at least 10 lymph nodes, mastectomy, expanders and radiation for 6 weeks then 6 months to a year later reconstruction.

MDA is aggressive. That's both good and bad but what the heck, you can rail road me and make these decisions for me not to mention while they are fantastic at curing cancer (because of a lot of over treatment) they are not known for gracefully putting you back together. Plastics is not their specialty so I don't expect that, thus I looked for a surgeon that I feel comfortable with and deciding what type of reconstruction is MY choice.

I'm not even leaning towards RADs or taking more than the 2 positive lymph nodes.

Does everyone have a surgical oncologist and plastic surgeon? My plastic guy said he would work with her but she said NO. He works with another breast surgeon who also comes recommended and does a lot of breast cancer but she's not a surgical oncologist.

Any thoughts?

Eva
Er/pr negative, her 2 positive
Right breast clear
Left breast, 2 tumors, 4mm & 1mm
2 + lymph nodes (the 1st pathologist said negative MDA said positive)
Apparently there is a grey area I don't understand.
Treatment
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Old 07-25-2014, 08:09 AM   #2
sarah
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Re: Hand Slapped by my surgical oncologist 😡

Hmm, well she may feel the radiation will be better to do before reconstruction, hopefully someone can answer the delay with reconstruction question. I hope you're right handed. taking out so many lymph nodes means you'll have to be very careful with that arm and if you ever prick it or get a bite on it, you will have to quickly clean it and put an anti-bacterial liquid on it. You should definitely have lymph massages after the surgery and learn to do exercises yourself.
You're at the top HER2 hospital so you are in good hands.
take care,
health and happiness
sarah
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Old 07-25-2014, 08:19 AM   #3
snolan
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Re: Hand Slapped by my surgical oncologist 😡

I had a general surgeon and plastic surgeon who have worked together and it went very smoothly. I was told by the general surgeon that he didn't know what was going to have to come out until he got in there. I would question why the surgical oncologist is predetermining what he is going to do and who he will work with. You need to have control of what is going to happen to you on some level. You always have a choice of who you work with so don't be bullied into something that doesn't feel right.
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dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 07-25-2014, 09:10 AM   #4
Nurse4u2day
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Re: Hand Slapped by my surgical oncologist 😡

I have a surgical oncologist ( specialist in IBC) and 2 plastic surgeons along with my medical oncologist. They all work very well together .
I listen to my medical oncologist for chemo tx
I defer to my surgical oncologist for the bmx ( IBC is actually in the surface of my skin along with in the skin tissues)
My first PS placed my expanders . My second PS out of Stanford specializes in the type of recon I'm going to have done DIEP ( my other ps does not , one is local oneis not hence. The two PS.
My surgical oncologist referred me to both my medical oncologist and plastic surgeon. My first plastic surgeon referred me to my Standford surgeon.
__________________
]11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
11/19/21- 8 years today I officially remain NED and in 12 days I will be having a lymphnode transfer to help decrease some mild lymphedema! Still working, living life and soon to see a day I thought never would happen and that’s becoming a grandparent June 22nd.
11/19/2023 - 10 years since diagnosis and I remain NED
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Old 07-25-2014, 09:49 AM   #5
LizzElliot
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Re: Hand Slapped by my surgical oncologist 😡

You should be able to have the docs you want. However, if you have two who won't play nice together, I suppose that's worth considering. Is your Surgeon's preferred PS OK? Or should your Surg be given the boot for one who can play nice with your chosen PS? Honestly, when you are facing chemo, cancer, surgery, recovery, your Surg should be ashamed of herself. Quite unprofessional to have these deal-or-no-deal alliances and hold you captive to them.
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Old 07-25-2014, 10:13 AM   #6
Shirley
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Re: Hand Slapped by my surgical oncologist 😡

Eva,

Your medical team should work together. I wonder if the surgical oncologist said "no" because you'd be going to a different hospital, or maybe your plastic surgeon doesn't have privileges at MD Anderson? My PS was present for the mastectomy so that he could place the expanders.

I've never been told what to do; recommendations were made and I usually had some choice. I am going to providers that are all in the same hospital system and they all work together regularly. I did at one time consider a PS in another town for DIEP and they were all fine with that. Nobody ever said "no".

Ultimately it's your choice. Does MDA assign you with a nurse navigator? I went to this person on a few occassions for assistance (needed desperately to switch to a different radiation oncologist)--they are usually very good at helping you untangle and resolve these issues.

One comment about the nodes. What you've described sounds standard. If you have 2 positive nodes I think it is common to take more than that. I only had micromets in one node and my surgeon took 5 or 6 (and I know some of the other docs in that hospital routinely took out more than that).

I hope things get cleared up soon for you.

Shirley
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  • Age 54 at dx (April '13) Stage 2b, grade 3
  • ER+ PR+ HER+, 9 cm tumor one breast and <0.5 cm in sentinal node
  • BRCA1 and 2 negative
  • Neoadjuvant TCH chemo started 5-15-13 (4 rounds, 3 weeks apart)
  • Unilateral Mx w/expander 8-22-13 (right side)
  • 5/5 nodes Neg
  • clear margins but close. Tumor at removal down to 2.2 cm.
  • Radiation 6 wks starting 10-17-13.
  • Herceptin every 3 weeks until 4-23-14
  • DIEP/Mastopexy 10-8-14, U of WA
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Old 07-25-2014, 04:11 PM   #7
BonnieR
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Re: Hand Slapped by my surgical oncologist 😡

I notice your profile mentions a "grey area" regarding lymph nodes that's pretty important to clear up!
And I personally would have to step back and reconsider a surgeon who is so domineering and touchy. Unless she is fabulous and just has bad bedside manners. But these decisions are yours to make, not hers. You chose the doctors who you're comfortable with
I like someone's suggestion of speaking to a patient advocate to sort this out
But don't take any crap either!
Keep the faith
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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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Old 07-25-2014, 06:41 PM   #8
jaykay
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Re: Hand Slapped by my surgical oncologist 😡

My breast surgeon has a "preferred" plastic surgeon she works with. I met with the ps to make sure I liked her and agreed with what she wanted to do. I think all the breast surgeons have preferred partners but you still have the right to choose who you want. If I didn't like mine, I would have chosen someone else.

They do work in tandem - breast surgeon does the mx and the ps is right behind him/her with the reconstruction.

Were the 2 positive nodes from a sentinel node biopsy? They are tricky; you have to be careful. That's probably why they are recommending rads.

I had a bmx first with expanders, chemo, radiation and did end up waiting about 6 months for the final exchange surgery with silicone implants. Only reason I waited so long was some business travel that was planned. Had my expanders in for a year. The radiated breast is a bit tighter than the other one, but basically, they look fine to me.

No bullying allowed here - you make your own choices and get all the opinions you want.

Best
Janis
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 07-27-2014, 09:56 AM   #9
KeriK
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Re: Hand Slapped by my surgical oncologist 😡

I too am a MDA patient. My onc surgeon was dr Kelly Hunt and plastics is Dr Jessie Selber
I love them both and they worked great together. My recon was done months after radiation. Your skin needs time to heal and I highly recommend having those "gray" nodes removed!!
Hope this helps
PS. My breast look so great and so natural Dr Selber listened to my concerns and wishes and was able to come up w a plan that didn't involve tram flap.

Keri
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[/SIGPIC]37 years old
12/10 her 2+, ER+ invasive ductile carc stage 3C
1/11 taxol herc 12 wks
4/11 FEC herc 12 wks
8/11 masectomy 48 lymph nodes removed
9/11 tamoxifen
10/11 radiation thru Dec
11/12 recon!
12/12. It's back. :( mets to liver and lungs
Stopped tamoxifen
1/13 TDM1 expansion trial
4/13 lung mets gone 65% reduction in liver markers in low teens!
12/13 lungs still clear! Liver mets reduction
12/13 opherectomy
1/14. Tumor markers increasing. 30's now
2/14 TMs back in high teens
4/14 increased calcium levels
5/14 Xgeva to kadcyla. Scan showed tiny scar tissue on sternum, not previously ever seen
8/14 NED
12/14 NED!!
4/15. NED. YAY! Dr thinking about stopping kadcyla
7/15 still NED. LAST KADCYLA SCHEDULED FOR 9/3
8/15 left side of tongue and lips went numb, brain MRI revealed 10 lesions all over the brain. :(
8/15. Tumor markers still in high teens ???
8/15. 15 rounds of Whole Brain Radiation
Started an Alzheimer's medicine, Namenda, to help preserve brain cognition.
9/15 started Afinator and Tykerb
10/15. Brain MRI. 7 rumors left, nothing new, nothing growing
12/15. 3 sessions of cyber knife
3/16 MRI stable. Nothing new nothing growing nothing shrinking
5/16. MRI. 4 existing tumors doubled in size and 2 new tumor
Looking into clinical trials
6/16. 6 2 hr sessions of cyber knife
10/16 stable MRI
11/16 back in the body.......lungs liver lymph nodes sternum
11/16 abraxane herceptin xgeva
12/16 lungs clear but now 2 tumor in liver
2/17 Opdivo ibrance Tykerb xgeva
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Old 07-28-2014, 06:07 PM   #10
Adriana Mangus
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Re: Hand Slapped by my surgical oncologist 😡

Eva,

I have to agree with Kerik. I did not have breast reconstruction but it's important for the body to heal.

Nice post Kerik.

Take care,

Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 08-16-2014, 03:34 PM   #11
agness
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Re: Hand Slapped by my surgical oncologist 😡

Wow. That is a lot of audacity. No, you get to decide who does your reconstruction.

If I hadn't don't my research the standard of care for me would have been left mastectomy and full ALND. But I had been breastfeeding at the time of my diagnosis and I knew where the tissue was damaged as it was no longer producing milk there.

Based on a study that had been done looking at neoadjuvant chemo and SND as a predictor of response in the axilla we were able to get my surgeon on board with less invasive surgery, given my HER2 diagnosis they easily offered me lumpectomy instead of mastectomy.

My sense after 6 rounds of TCHP and an MRI and ultrasound showed the tumor had dissolved was that surgery wasn't needed, that if anything was left if was microscopic and rads could take care of it. Still, there is little to no data available on forgoing surgery and none about doing this after neoadjuvant TCHP. I resigned myself to having the lumpectomy and SND which I had this week. My pathology report came back quickly - no cancer was found anywhere and my lymph node showed scarring.

TCHP is working and the doctors can't even keep up with the results.
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Old 08-19-2014, 03:07 PM   #12
norkdo
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Re: Hand Slapped by my surgical oncologist 😡

gosh, you have to be Canadian.
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 08-19-2014, 08:12 PM   #13
CoolBreeze
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Re: Hand Slapped by my surgical oncologist 😡

I selected a different PS than my surgeon typically works with. He didn't complain but iI found t is just a bit more difficult to schedule sometimes. My PS had a homebase of one hospital and my BS had a different hospital. They had privileges in both hospitals but the schedules meant that certain surgeons got preferences and it was harder to manage.

It's weird stuff that we never know about. But why your doctor wouldn't just explain that is beyond me.

I agree with everybody. You pick who YOU want and they have to make the rest of the stuff work.
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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.
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