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Old 01-22-2011, 06:42 PM   #1
mamacze
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Question Sisters with Mets...should I stop Herceptin?

My fervent wish is that you ALL may have this conversation with your oncologist; but once again my oncologist has broached the idea of stopping all treatment.
I had mets in all 4 lobes of my lungs and liver in 2004; and have been NED since my first round of adjuvent therapy.
My oncologist is asking me to consider stopping my Herceptin.
I have been on it for 7 years.
I have body scans scheduled in Feb.
What is your experience? Please share and give me your thoughts. I value your opinions and would not consider continuing this walk without 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 01-23-2011, 01:04 AM   #2
Jackie07
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Re: Sisters with Mets...should I stop Herceptin?

Kim,

I would think it'll be OK for you to stop Herceptin now that you've had vaccine trial and been NED for over 5 years.

Enjoy your new freedom and don't look back!
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Old 01-23-2011, 04:38 AM   #3
Chelee
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Re: Sisters with Mets...should I stop Herceptin?

Hi Kim,
It's absolutely wonderful to hear your 7 yrs out and still NED. Such an encouraging post...especially for the newly dx that lurk and post here. One can never have enough hope.

As to your question, that would be a really hard decision for me personally. However that being said I know Christine, AndiBB, and StephN to name a few were all on Herceptin a long time and have been off it quite a while now and are all doing fantastic. But recently we did have one Her2 sister "Jhandley" (Jackie) that was doing great after liver mets for 4 yrs or so and wanted to go off herceptin against her onc's advice. Six months out or so she recurred lungs, brain and spine mets. I can't think of who at the time but there is also one women here that said she has went off Herceptin 3 or 4 times now and each time recurred. But you never know if they would of recurred regardless of the Herceptin or not? It's impossible to say for sure?

However you are seven yrs out...and your onc feels good about it...but I know it's not easy. Hang in there and hopefully StephN and some others will reply. Their opinions will be very helpful to you I'm sure. A 2nd opinion onc might help you decide too? Wishing you all the best..and may you and NED live happily ever after.

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Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.

Last edited by Chelee; 01-23-2011 at 01:50 PM..
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Old 01-23-2011, 05:37 AM   #4
Lauriesh
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Re: Sisters with Mets...should I stop Herceptin?

I am newly stage 4, and boy do I hope I have your dilemma someday!

What about extending time between doses? Maybe going every 6 weeks for a dose, then a year later, every 8 weeks.
Just a thought

Laurie
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Old 01-23-2011, 08:51 AM   #5
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Re: Sisters with Mets...should I stop Herceptin?

Hej Mamacze,
I echo Lauriesh's thought of hoping to have your dilemma someday :-). But just like Chelee I remember Jackie (JHandley) that recurred after going off Herceptin. I don't have any research to back anything up but because of Jackie I'd be reluctant to go off.
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Old 01-23-2011, 09:19 AM   #6
Becky
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Re: Sisters with Mets...should I stop Herceptin?

Dear Kim

AndiBB and StephN (as well as our founder, Christine) have all stopped Herceptin. Although Jackie Handley did stop - she was not on Herceptin for years - she was from Australia and even though NED, she was only 18 months out when stopped, not years and years.

It is an anxious decision to make and I would privately message Andi and Steph since they have walked this path. I am so happy you continue to do so well and havd go make this decision.

Miss you!
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Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
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Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
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Old 01-23-2011, 10:06 AM   #7
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Re: Sisters with Mets...should I stop Herceptin?

I, too, strive to be in your position. I am so new to this game, I probably can't offer any good sound advice, but pose questions instead--1) if you aren't having any side affects from the Herceptin, why would you stop, 2) does the pathology and/or aggressiveness of your former tumors matter, 3) if you had a recurrence, would it be harder to treat?
You and so many others continue to be what I hope to be. Thanks for paving the road, letting us know it CAN happen.
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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 01-23-2011, 10:31 AM   #8
Mary L
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Red face Re: Sisters with Mets...should I stop Herceptin?

Hi Kim, I was on Herceptin for almost 5 years. When my ejection fraction would go down my onc would stop the Herceptin. I had to stop it 3 times during the 5 years. I would get skin mets that would start at my mastectomy site and spread across my chest. Finally my onc said ," Dr. Slamon and I both feel you can stop Herceptin. If your cancer comes back we know the Herceptin works for you." I have been off it for 3 years this past Oct 2010 and I remain NED. It is scary because it was my security blanket, but I am doing fine. Best wishes and congratulations on your success. Mary L
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Old 01-23-2011, 10:42 AM   #9
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Re: Sisters with Mets...should I stop Herceptin?

Hey Kim, I wanted to respond and say how happy I am for you and think that Chelee and others have given great suggestions regarding your decision. (I know we recently communicated about my personal situation and wish I could follow your footsteps!!) I tend to be rather cautious about things, in general, so I would just suggest not to feel the least bit rushed in your decision making. Does your onc comment on the effectiveness of herceptin after a great length of time? Perhaps you are blessed with a very strong immune response as well. Whatever you decide, I wish you the best. Ceesun
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Old 01-23-2011, 12:14 PM   #10
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Wink Re: Sisters with Mets...should I stop Herceptin?

I have three suggestions.
1. Ge a second opinion.
2. I think one of the other members suggested spreading out the Herceptin, so you still have some protection.
3. Asking for a lower dose of Herceptin and continue it on your regular schedule. That would give you some protection too.
Good luck and good health to you. Take care.
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Old 01-23-2011, 06:46 PM   #11
mamacze
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Re: Sisters with Mets...should I stop Herceptin?

Checking in with you all is better than putting on my favorite slippers; I truly feel like I just got a bucket full of love and advice from a room full of girlfriends.
I love Jackie's optimism ..and Chelee; I will followup on your suggestions.
Laurie, Ceesun, KDR and WhatZ; it is my fervent prayer that you all have my "dilemma".
Becky...how nice to see your face...and hear your thoughts! I had forgotten that StephN and Andi had stopped; I will PM them if they don't chime into this thread. I remember that Christine had stopped, but she is just such a miracle that it is hard to believe I could ever reach her level of recovery.
Mary L I am amazed that you have made it 3 years without recurrence! (PS Mary L, where in PA are you? Where do you get your treatments?)
Elaine, I will raise the options you mentioned with my onc. I think I will also call a doc at Sloan and Dr. Disis in Seattle where I got my Vaccine. As always you have all given me food for thought. Who says angels don't exist?!
Please keep the opinions coming, I am just so grateful for your advice.
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 01-23-2011, 07:05 PM   #12
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Re: Sisters with Mets...should I stop Herceptin?

Hi Kim! I like what Elaine says, for what it's worth. What's your heart tell you? You are NED, so you do have time to evaluate and think. Weigh the pros and cons. Walk outside and find a good place to sit, a quiet place, close your eyes, take a deep breath, and think, "what's best for me? what should I do?" The answers will come. Kim, if you believe in a higher power, a quiet place is the best place to hear the answers.
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Old 01-23-2011, 07:24 PM   #13
Barbara H.
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Re: Sisters with Mets...should I stop Herceptin?

HI Kim,
I remember meeting you at the BCMETs conference at Dana Farber. I have been NED since starting on TDM-1 and am currently on Tykerb and Herceptin. I recently asked my oncologist if I could take a break. He felt that in my case I would probably recur again if I stopped, and that my current treatment would not work as well to bring me back where I currently stand. He did say that he would not have a problem with me taking a short break if I were to go on a trip. He spoke at the conference that you attended, was one of the first oncologists to enroll patients on the phase 1 trials for TDM-1 when it just was a number. He is involved with many trials and does research. You might consider consulting with him. If you are interested, send me a private response and I will forward you his name.
Best wishes with your decision.
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Old 01-23-2011, 07:50 PM   #14
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Re: Sisters with Mets...should I stop Herceptin?

Hi Kim,

Congratulations on having this great dilemma! When I met with Dr. Slamon, he indicated that when women have been NED on Herceptin alone for 7 years, he has tried "wrestling them off" the Herceptin. I asked him why he wanted them to stop the drug. He didn't seem to have a medical reason. He just wanted them to lead their lives without being tethered to the infusion center. He seems to believe that if the cancer has not returned for this amount of time, it is unlikely to do so.

He told me that if I were NED for another year and a half or two (it currently has been about 4 years), I should consider going off the Herceptin.

That said, if I were in your position, and I didn't have any side effects from the Herceptin, I don't know if I would have the guts to discontinue it.

Good luck with your decision!

JB
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Old 01-24-2011, 09:38 AM   #15
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Re: Sisters with Mets...should I stop Herceptin?

I would definitely get another opinion. Elaine's suggestion of a smaller dose of herceptin sounds good. Congratulations on being NED for 7 years. I know I want to stay on herceptin forever ( and I hope forever is a long time)
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Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 01-25-2011, 08:45 PM   #16
mamacze
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Re: Sisters with Mets...should I stop Herceptin?

Bill, thank you for the gentle reminder to get quiet and listen to the still small voice. I will do that.
And Barbara; I do remember you! I am tempted to make a run up to Dana Farber for a second opinion; however I already have an appointment at Sloan and am waiting for feedback from Dr. Disis (Tumor Vaccine Group). Depending on what they say, I may or may not seek a third opinion.
JB, you gave me the nugget of information that I was really wondering about; what would Dr. Slamon do. Seven years is the magic number. That is huge. I will let you know what the other docs say.
Dear sisters; thank you from the bottom of my heart for your kind words and caring hearts. I will post again in a couple of weeks and let you know the outcome. God willing; you will all be facing a similar dilemma.
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 01-25-2011, 10:44 PM   #17
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Re: Sisters with Mets...should I stop Herceptin?

Dear Kim -
Good to see you back here asking the tough question. I think you were pondering going off Herceptin a year or so ago, but decided against it at that time.

All is still well with you, I am SO happy to see.

I have been off Herceptin for over 2 years now. Just had scans and blood work 2 weeks ago and got a good report - all is boringly normal.

Please let us know what Dr. Disis says and how the appt at Sloan goes. I have met a couple of other women "like me" - meaning dx close to same time and recurred quickly, got to NED on Herceptin and finally went off. It seems like 7-8 years is getting to be a common number.

Cyberhugs to you.
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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 01-26-2011, 01:12 AM   #18
Chelee
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Re: Sisters with Mets...should I stop Herceptin?

Kim,
Lots of good feedback here and I know the 2nd opinion will help. Elaine's idea of spreading out the Herceptin might be another good option till you decide what you want to do? I know Jhandley (Jackie) would spread her infusions out to 4 or 5 wks at a time due to the long drive for Vit H. For those ladies that might run across this thread at a later date, I just wanted to clear one thing up. Jhandley (Jackie) was on Herceptin for 4 yrs when she stopped it & had a recurrence...not just the 18 months that was mentioned. I checked her old posts. So Jackie did stay NED the 4 yrs she was on Herceptin...and recurred 7 months after stopping it. She hadn't hit that 5 yr mark some of our onc's talk about...but close to it.

However Steph, Andi and Christine had been on herceptin much longer then Jackie when they stopped Herceptin. They all passed that 5 yr mark and more. I know it can't be an easy decision..but I wish you luck with your 2nd opinion at Sloan, and Dr. Disis...at least you can take your time to decide...it helps when your not in a hurry. Here's to yrs of continued NED.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.

Last edited by Chelee; 01-26-2011 at 01:15 AM..
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Old 01-26-2011, 05:32 PM   #19
mamacze
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Location: Madison, Connecticut
Posts: 638
Re: Sisters with Mets...should I stop Herceptin?

StephN! How joyful to hear you are still NED! Angels sing! Life is good! NOTHING beats a boring normal scan result!
I think you are right about the 7/8 years NED mark; but as you say, stay tuned; I will post what the Sloan folk say.
And Chelee thank you for the clarification on Jackie. It helps to know the facts.
I will post after seeing Dr. at Sloan.
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 04-21-2011, 09:39 AM   #20
Kim in CA
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Re: Sisters with Mets...should I stop Herceptin?

Hi Kim,

Glad to hear you are doing so well, and glad you brought this up.

I am going to be talking to my Onc. about stopping Herceptin at my next appt. I have been NED in my body since 2002. My brain tumor was in 2005, but I suspect that those "seeds" were already there from my massive liver involvement in 2001.

I had always thought that if I made it 5 years since any recurrences I would try going off the vitamin "H" , but my Onc sort of talked me out of it. He had gone to a symposium last year and mentioned me to a colleage, who was a specialist in BC (can't remember his name now) , and his oppinion was that I should stay on it forever.

I feel in my heart that I wan't to at least give stopping a try. I am also concerned about being on the Femara for so long (9 yrs.) My cholesterol is now elevated and I had to go on blood pressure meds 3 yrs ago. I have always had extremely low blood pressure so this is a concern for me.

I don't do scans anymore, just monitor things with tumor markers and occasionally Her2 serum test. This is because of the concern over so much radiation exposure. If I were to stop the Herceptin, I would be a little worried about not doing scans, so that might have to change.

So much to consider.......but I'm still going to pursue it.

Kim
__________________
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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