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Old 04-21-2011, 01:27 PM   #21
Joan M
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Re: Sisters with Mets...should I stop Herceptin?

Kim,

I hope to be in your position one day with my oncologist asking me to consider stopping Herceptin. Wow! But it's a tough choice to let go of the security blanket, so I don't blame you for being nervous.

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 04-21-2011, 02:35 PM   #22
StephN
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Re: Sisters with Mets...should I stop Herceptin?

Hi Kim -
Great to hear from another "liver mets" buddy that all is well after this period of years.

Sorry to hear about the blood pressure problem. Mine is still on the low/normal side, but my hubby has to watch his so I know about that.

Our brain mets were also about the same time, so I hope all will be well with you as with me.

We have not heard back from our friend Mamacz as to her final decision on stopping Herceptin. It gets easier, especially after the first 6 months when you get out of the routine of going for infusions.

Take care!
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 04-24-2011, 03:50 AM   #23
chrislmelb
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Re: Sisters with Mets...should I stop Herceptin?

Gosh it is a big decision Kim and i also think of Jackie(jhandley). "If it ain't broke, don't fix it"
Re Femara, i am nearing the end of it for me and i am terrified of going off it. I feel it has kept the cancer at bay and if i go off my oestrogen will cause a recurrence.
Good luck with your decisions.
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Christine

DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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Old 04-24-2011, 10:49 PM   #24
trasia
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Re: Sisters with Mets...should I stop Herceptin?

stephn,
your story sounds encouraging! by the way, did you ever take complimentary therapies along with your standard care? how about the other ladies in this thread?
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I learned to hold myself with dignity, respect and humility. My mother taught me to love and care for humanity, and a compassion that I have never seen matched. She is brilliant, and more generous than any person I have ever met. I know my mother loves me more than life itself. Her latest lesson is Courage as WE seek treatment for her condition and she enter the great unknown, and faces her inner demons…And I promised her that I will be her strength when she needs it, and her patience when she cannot bear it anymore..

~trasia (primary caregiver of her 60 year old mother- IDC Stage 2B ER+ 90% PR- Her2+++ 3/25 lymph node involvement (Diagnosed Jan 2010- BMX- Feb 2010)
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Old 04-26-2011, 06:47 PM   #25
mamacze
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Re: Sisters with Mets...should I stop Herceptin?

Hi Girls!
I love reading your opinions and ideas...and I am sorry for being absent for a while...I have this trouble of getting distracted with kids, holidays, sunshine...
StephN! How wonderful to see you and hear that you are still doing well! Is the wine store still doing well? And Kim! I feel like this is old home week and I am getting caught up with life long friends. I am just so darn happy that you both are doing well.
Yes, I did sleuth this out and here is what I found out. I spoke at length with Dr. Dang at Sloan. She has several her2 patients who are being maintained with mets. Her opinion is that yes, we can take a holiday from Herceptin. Many of her patients have stopped their Herceptin but they have all reoccurred at some point. Some as soon as 4 months and others have not reoccurred for 2 years. When she sees a renewal of cancer activity, she restarts the Herceptin and they continue to respond.
I am also worried about the radiation from all those scans. I have decided to stop the scans and go instead to tumor markers; traditional and Cell Search Circulating Tumor Cells. If one or both markers rise; then I will get a scan. Finally, I have decided to take the summer off from Herceptin from mid June through Mid September.
OK, enough yakety yak from me. While thanking God for many years of NED we will also have to continue to compare notes! I love hearing from you!
Love Kim from CT
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2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2022 On Herceptin and NED continues - WOOT WOOT!
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Old 04-27-2011, 09:43 AM   #26
KDR
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Re: Sisters with Mets...should I stop Herceptin?

Kim
I think you have a great plan. I think it's well thought out and you are on the right path. I wish you the best, best, best, and that your markers never rise. You are an inspiration to us all.
Love
Karen
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World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 04-27-2011, 12:12 PM   #27
Ellie F
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Re: Sisters with Mets...should I stop Herceptin?

Hi Kim
Good luck with your plan. I am really glad you have let us know.

Do you still get any side effects from herceptin?

Did Dr Dang give you any idea how long some of her patients have been maintained on herceptin?
My own onc says 5 years max which is why I tell him about others like you on the board!

I wonder if there are any stats about long term survivors that have stopped herceptin and not recurred? I am thinking of Steph and Andi BB?

Ellie
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Old 04-27-2011, 01:30 PM   #28
Mary L
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Red face Re: Sisters with Mets...should I stop Herceptin?

Kim, I wish you the very best as you take your break from Herceptin. I hope that you have the wonderful results that I have so far. As I told you, my onc said that if it came back he and Dr Slamon agree that the Herceptin will take care of it. Have a great summer with your family. Best Wishes, Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 04-27-2011, 01:39 PM   #29
mamacze
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Re: Sisters with Mets...should I stop Herceptin?


Hi all,
Ellie - side effects with Herceptin? Yes - after 7 years....sore joints, nonstop runny nose...but nothing compared to the alternative; right?!

Dr. Dang has "many" Her 2 patients with mets - although I didn't ask her for a count.

However if you really want to feel hope beyond belief; attend an annual meeting of the MBCN group (www.mbcnetwork.org). The conference organizers start each annual meeting by asking for a show of hands...how many have lived 1+ years with mets; 2 + years, 5 + years, 10 + years, and yes they go up to 15, 20 and even 30+ years. That moment ... looking around the room and witnessing all the angels who live everyday lives with this is a simply hope filled moment of bliss and well worth the annual trip.

And Karen, hang in here with us. It sounds like you are getting good treatment and so far have had a positive response.

Love and Hugs,
Kim from CT
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2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2022 On Herceptin and NED continues - WOOT WOOT!
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Old 04-28-2011, 04:01 AM   #30
Ellie F
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Re: Sisters with Mets...should I stop Herceptin?

Hi Kim
Thanks for responding and for the encouragement.
The reason I asked was in my own informal way I was trying to figure out if side effects were an indication that herceptin was working.
I am also very encouraged that your mets were also er/pr- which according to all the literature suggests holds a worse prognosis.

I will be keeping everything crossed for you over the summer whilst you have your herceptin break.

Hugs
Ellie
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Old 04-28-2011, 10:01 AM   #31
Kim in CA
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Re: Sisters with Mets...should I stop Herceptin?

Hi Kim and Everyone!

Well..... I saw my Oncologist yesterday and I have his blessing to STOP the herceptin. I'm still a little giddy, and overwhelmed at the same time.

The plan is to do Tumor markers and Her2 Serum in 6 weeks, and see how things are at that point. After almost 10 years of getting my Vitamin "H" every 3 weeks, I haven't quite processed how I feel about all of this. I unexpectedly burst into tears twice yesterday, just feeling overwhelmed by what seemed to be this monumental decision I've been pondering for so long.

I'm going to stay on the Femara for now. If I'm able to stay NED without the Herceptin, we will consider dropping the Femara next year, as it will have been 10 years for it too.

Kim (or anyone else) , can you tell me where I can find out more about the "Cell Search Circulating Tumor Cell" test you spoke of ? I would like to use all tests available to monitor things without having to do more scans.

I'll keep you all posted on how things go.

Kim in CA
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Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.


5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.

9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .

11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!

7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!

June -Dec 2004 UW Vaccine Trial.

7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.

Brain MRI @3 months NED!

2006-2011 brain/body still NED

8/04/11 Taking Herceptin break, will monitor with tumor markers.

6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.

7/23/12 CA15-3 now 49.3
Her2 Serum 26.8

8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49

11/7/12 Add weekly Taxotere for 4 cycles

2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.

November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!

Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara

Jan 2016 Begin Kadcyla

March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla

November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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Old 04-28-2011, 10:20 AM   #32
mamacze
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Re: Sisters with Mets...should I stop Herceptin?

Hi Kim...
This is OVER THE TOP news! It sounds an awful lot like maybe you have...dare I say it.... a cure going on....WOW!
I was thinking the Cell Search CTC is the same as the HEr 2 serum test...but after some sleuthing, I see that they are different. I am copying information on the Her 2 serum test to bring to my oncologist. If you would like more info on the Cell Search; this is it:
http://www.veridex.com/cellsearch/Patients/FAQ.aspx
Good luck! Let's stay in touch periodically if things change...
Love Kim from CT
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2022 On Herceptin and NED continues - WOOT WOOT!
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Old 04-28-2011, 10:28 AM   #33
loveher
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Re: Sisters with Mets...should I stop Herceptin?

I don't have any advice to offer i just wanted to say Kim: you're amazing!
-sue
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Hi i'm Sue. I've been part of the her2support family since 08'. My amazing mother Hong was her 2 stage IV 9 years and bravely earned her wings, I still love this board and continue to her fight. Plz reach out if you want to connect:)
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Old 04-28-2011, 10:52 AM   #34
krisvell
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Re: Sisters with Mets...should I stop Herceptin?

Hi Kim;
Just chiming in to wish you well on your summer off with Herceptin. What great news!
Hugs,
Kris......
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06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 04-28-2011, 11:42 AM   #35
StephN
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Wink Re: Sisters with Mets...should I stop Herceptin?

Hi Kim and Kim -

We have all walked a long time with this disease and been here to chat coast to coast about how we are and how we feel about that.

The question about Dr. Dang's response was "how long had those patients who recurred been NED on Herceptin?" Were they in OUR league, or are they a good comparison?

People stop taking their drugs for a variety of reasons, so such a very general answer leads to more questions.

Anyway, enjoy the summer away from your medical center, and focus on families and fresh air.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 04-28-2011, 04:26 PM   #36
Mary L
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Red face Re: Sisters with Mets...should I stop Herceptin?

So happy for both of you, I have done very well for 3 1/2 years and just had my scans run and everything was fine. I wish you both the best and hope you stay ned. Have a wonderful summer. Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 09-22-2011, 12:17 PM   #37
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Re: Sisters with Mets...should I stop Herceptin?

Hello, I am new to this thread. wanted to ask StephN, Mary L how are you doing as we are now in the end of Sept 2011. Are you still NED? I 'd love to hear from you as you are an inspiration to a lot of us here. Also, i haven't seen any more posts from christine the founder of her2, i just hope that she is doing well while she is off herceptin too. PLease let us know.
Thanks
Ema
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Old 09-25-2011, 08:38 AM   #38
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Re: Sisters with Mets...should I stop Herceptin?

Hello -StephN here,
I am traveling so just found this. My checkup in August could not find any trace of active cancer. It is now getting close 3 years since I have stopped Herceptin, and feel very well.

Christine is also doing well cancerwise, last I spoke to her. So, that makes two of us.

All the best.
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Old 09-28-2011, 01:10 PM   #39
KristinSchwick
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Re: Sisters with Mets...should I stop Herceptin?

Kim and everyone else on the board,
Thanks so much for posting. It gives me so much to look forward to, I am almost in tears. I too am stage IV and want more than anything else in the world to become NED, and one day stop treatment so I can expand my family, as I am only 30. Kim, please stay in touch with the boards so we can all continue to hear your journey when and if you stop herceptin. My oncologist, like yours, says that after an extended time of NED, it is okay to stop treatment. I have nothing else to offer except that......the more women that take that scary jump and get off herceptin or what ever treatment..... the more doctor's will learn and hopefully one day millions of women will be able to avoid excessive treatments after becoming NED.

Not to take the decision out of your hands or to belittle your own judgement.... just something to think about. Even though its not a clinical trial (to end treatment) its still an important clinical question to answer..... how long.
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[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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Old 09-28-2011, 02:34 PM   #40
norkdo
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Re: Sisters with Mets...should I stop Herceptin?

did jackie die?
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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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