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Old 08-08-2018, 03:05 PM   #1
ginnyg898
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Join Date: Sep 2010
Location: Northern California
Posts: 64
Recurrence

I am back after nearly 8 years NED. Routine mammogram indicated a new tumor that has been missed as it has been buried in scar tissue from lumpectomy. New tumor same profile as before. Had TCH back in 2010; new Onc wants to add Perjeta this time. Looking at new-adjuvant chemo, then mastectomy. Waiting on genetic testing to determine if I lose just my right breast or both.
Been a complete wreck since I found out last week. Chemo last time was brutal. Still in the discovery stage and trying to come to grips with the treatment ahead of me.
This site was so helpful last time I went thru this; not actually glad to be back, but comforting to come back to a supportive environment.
Would love to hear from those that have been thru a recurrence and hear about your experience.
__________________
41 Years Old
Dx w/IDC in August '10
No family history
ER+/PR-/HER2+
2.2cm tumor/Stage 2A
No node involvement
Tested negative for BRCA 1/2
Participated in a UCLA clinical trial testing TCH and/or Lapatinib in stage 1/2/3 bc patients that can be removed by surgery.
Underwent neo-adjuvant therapy to shrink tumor prior to surgery.
1st Surgery date: 2/16/11
Pathology report indicated ADH/DCIS in margin.
2nd Surgery: 3/21/11
Clean margins!
Started radiation: 4/11/11
Completed radiation: 7/8/11
1st post-surgical mammogram: 8/16/11 - CLEAR!
6 Weeks of Tamoxifen - Failure to Respond
Started Lupron/Arimidex: 8/29/11
Herceptin until September '11

Recurrence - August 2018
Same profile - ER+/PR-/HER2+
Undergoing neo-adjuvant therapy prior to surgery;
Gemzar, Carboplatin, Herceptin & Perjeta
Chemo through the end of 2018...
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Old 08-08-2018, 04:32 PM   #2
Laurel
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Location: Hershey, PA. Live The Sweet Life!
Posts: 1,914
Re: Recurrence

Hey there, Ginny!


I am so sorry you are back among us. There are several of our Her2Support family who are experiencing recurrences presently so just take a look at recent threads. I am sure others will chime in soon. Let us know your plan when you get one.
__________________


Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

10 Years NED
I think I just might hang around awhile....

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Old 08-08-2018, 09:11 PM   #3
SoCalGal
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Location: LA LA Land
Posts: 1,568
Re: Recurrence

Hi and sorry you are back. I'm not that well versed in recurrence but just off the top of my head I'd say get at least one second opinion. Hang in there, fear is the monster! I'm 22 years from my original diagnosis and 11 years MBC trying to get on a clinical trial I like.
-socalgal
__________________
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, to remove skin mets. Not able to get clear margins. So schedule another 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 – cut out, cut out, 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. New onc orders PET/ct & Brain MRI to re-stage me.
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 trial but then 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. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
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 GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4. [/COLOR][/B]
"FAILED" PETscan on 4/2/13 (WTF)
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 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA, 7 YEARS STAGE 4 and 18 YEARS FROM ORIGINAL DX! (CUCK FANCER)
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 Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
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 and due for MRI brain check (check please!).
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: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YEARS STAGE FOUR!
(20 years from original diagnosis) July 2016 - continue HAP plus Xgeva. Not NED but not DEaD.
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
2017 I AM COMING FOR YOU!
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation one=her2+ er/pr negative. AUGUST hoping to start clinical trial if they would just get it together and accept me.
CuckFancer!! 11 years MBC.
Aug 27, 2018 - start clinical trial ZW25 aka this better fu*king work
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Old 08-09-2018, 05:29 PM   #4
jaykay
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Join Date: Oct 2012
Posts: 617
Re: Recurrence

Hi Ginny, sorry to hear of your recurrence. I recurred after 12 years and even though it was considered a new primary because it was in the other breast, it was the exact same pathology as the original diagnosis.

I never had chemo or herceptin the first time around so I can’t relate to the physical angst of going through chemo again. But I can relate to the emotional feelings. Details are in my signature. Hang in there, you’re stronger than the cancer. Feel free to reach out via private message.

Janis
__________________
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 08-12-2018, 12:49 PM   #5
tricia keegan
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Location: Ireland
Posts: 3,376
Re: Recurrence

Hi Ginny, I also am so sorry you're dealing with this again and hope any treatment will be minimal. I have a few friends who are all doing great having had to go through this twice so try to remain positive.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 08-22-2018, 06:31 PM   #6
Laurel
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Location: Hershey, PA. Live The Sweet Life!
Posts: 1,914
Re: Recurrence

Hi Ginny!

Just checking in to hear how things are going and whether you have a treatment plan yet? Hoping and praying you are moving forward with a plan and feeling less fearful and stressed. We are thinking of you!


Laurel
__________________


Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

10 Years NED
I think I just might hang around awhile....

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Old 08-23-2018, 10:52 AM   #7
ginnyg898
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Join Date: Sep 2010
Location: Northern California
Posts: 64
Re: Recurrence

Hello All:

Thank you so much for the kind responses. The past 3 weeks have been tough but, as I told my husband, I have moved on from the 'grief and shock' stage into the 'lets get this over with' stage.

Genetic testing indicated that I don't have a tendency towards other cancers, so I will have a right mastectomy and keep my left. I will take whatever victories I can get at this point

My Onc spoke with both my previous Onc at UCLA and with the team at UCSF and the determination was made that we would do Gemzar, Caboplatin, Herceptin and Perjeta this time. Meeting with my Onc today and curious why that cocktail was chosen. I had Carbo and Herceptin previously...not sure what to expect as far as side effects for Gemzar and Perjeta. I will also be on weekly chemo. After 4-6 months of chemo I will have the mastectomy, then reconstruction. No radiation this time as I had it before.

I start chemo tomorrow. My kids were babies when I was going through treatment before and now are 11 and 9. We have been trying to prepare them for what the next year is going to entail, which is challenging in itself.

For those of you that have read my previous posts from 2010/2011, you know that my previous employer (aka Evil Lady Boss from Hell ) fired me after I shared my diagnosis. When I told my current employer, they could not have been nicer or more supportive. This was a revelation

I would love to hear from those that have had Gemzar as to what their experience was. Taxol wiped me out, but I am told that Gemzar can be milder...again, little victories

Ginny
__________________
41 Years Old
Dx w/IDC in August '10
No family history
ER+/PR-/HER2+
2.2cm tumor/Stage 2A
No node involvement
Tested negative for BRCA 1/2
Participated in a UCLA clinical trial testing TCH and/or Lapatinib in stage 1/2/3 bc patients that can be removed by surgery.
Underwent neo-adjuvant therapy to shrink tumor prior to surgery.
1st Surgery date: 2/16/11
Pathology report indicated ADH/DCIS in margin.
2nd Surgery: 3/21/11
Clean margins!
Started radiation: 4/11/11
Completed radiation: 7/8/11
1st post-surgical mammogram: 8/16/11 - CLEAR!
6 Weeks of Tamoxifen - Failure to Respond
Started Lupron/Arimidex: 8/29/11
Herceptin until September '11

Recurrence - August 2018
Same profile - ER+/PR-/HER2+
Undergoing neo-adjuvant therapy prior to surgery;
Gemzar, Carboplatin, Herceptin & Perjeta
Chemo through the end of 2018...
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Old 08-23-2018, 03:29 PM   #8
Laurel
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Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 1,914
Re: Recurrence

Ginny,

I am sorry you are having to do chemo again, but admire your gutsy attitude! There were a number of this group who have had Gemzar, so hopefully they will chime in soon. Glad you had a good experience with your present boss. Kindness and compassion can sure warm the heart, can't it? Please let us know how your first infusion goes when you feel up to it. I will be thinking of you tomorrow!
__________________


Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

10 Years NED
I think I just might hang around awhile....

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Old 08-23-2018, 06:44 PM   #9
Carol Ann
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Join Date: Dec 2013
Posts: 1,026
Re: Recurrence

Hi Ginny,


I am so sorry you have to go through this again. Hoping for minimal side effects from the chemo tomorrow. So glad your boss is alot more compassionate and a better human being this time around, that helps!!


Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 08-27-2018, 11:09 AM   #10
Donna H
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Join Date: May 2014
Posts: 209
Re: Recurrence

What is it with crappy bosses?? After my DX, my boss (at the time) asked me what it felt like to have my "perfect life" messed up. He then proceeded to tell me about all the people he knew who had cancer and died. He was a PEACH! On the positive side, there are great new treatments for cancer. Unfortunately there are no known cures for being an ass! I am very glad you have a different boss now and that you have a plan in place to beat the recurrence.
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