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10-04-2013, 06:55 PM
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#1
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Senior Member
Join Date: Nov 2008
Posts: 34
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How long Should I continue herceptin ?
I haven't posted in a while, it's been two years I'm NED and onc. Is talking about stopping herceptin. I have been on herceptin on and off for about five+ years. Anyone else a long term herceptin user? The one time I did stop my cancer came back within 3 months, so I'm a little afraid to discontinue it. My heart is good and I have no noticeable side effects. Any advice or experiences would be greatly appreciated! I'm currently stage 4 NED had a lung met in 2011 removed with surgery and taking tamoxifen. Really want to remain NED!
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10-04-2013, 07:54 PM
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#2
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: How long Should I continue herceptin ?
I don't think I would EVER go off Herceptin.
__________________
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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10-05-2013, 05:14 AM
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#3
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: How long Should I continue herceptin ?
I think if you're tolerating it so well why fix something that isn't broken and I'd stay on it if possible.
__________________
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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10-07-2013, 03:50 AM
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#4
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: How long Should I continue herceptin ?
Hi
Just wondered what your oncs reasoning for coming off was? I have debated the same issue with my own oncologist but its problematic as there is very little research out there. My oncs current view is to keep his stage 4 patients on herceptin for 5 years if they remain NED then stop! There are a few women on the board who have stopped herceptin but after a much longer time and have stayed NED. There are others however that have stopped and the cancer has returned. This seems to be what my own onc had found judging by his answers. The problem is all this feels like such a lottery!
Ellie
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10-08-2013, 07:20 PM
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#5
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Senior Member
Join Date: Nov 2008
Posts: 34
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Re: How long Should I continue herceptin ?
I agree, it does feel like a lottery! I wish there were more information about it. I agree with all of you, why stop when things are going so well! Going every three weeks is better than the alternative of having something pop up again. Thanks for your input, I always appreciate it!
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10-09-2013, 02:53 PM
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#6
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: How long Should I continue herceptin ?
Good luck, Raquel!
I believe I heard Dr. Slamon say within the past year or so that staying on and in remission for 7 to 8 years is a better bet than 5 years.
And I don't think he makes any statements that are not backed up by study and research.
In my case you will see that I was on Vitamin H for over 7 years. Probably would have remained on longer if my second port had not given me trouble. When I stopped it was with the intention of taking a little break of maybe 3 months to work the port problem. Using 3 tumor markers and scans I decided to see if I could go longer. So far, so good!
__________________
"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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10-09-2013, 06:00 PM
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#7
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Senior Member
Join Date: Nov 2008
Posts: 34
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Re: How long Should I continue herceptin ?
Thanks for the info I will mention it to my onc and the fact that I know all of you who have been long time vitamin H users! I like that, had never heard of it referred to like that! I think my mind is made up to continue on it!
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10-10-2013, 09:50 AM
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#8
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: How long Should I continue herceptin ?
Steph
Can you remember when and/ or where Dr Slamon said staying in remission for 7 plus years was better than 5 years! I to believe he only says these things when he has good evidence
Have tried a search but came up with nothing.
Many thanks
Ellie
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10-10-2013, 12:32 PM
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#9
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: How long Should I continue herceptin ?
Hi Ellie -
I heard it from a patient who sees him that I met in San Antonio at the Breast Cancer symposium. I am not sure who else from our group was there but I do recall discussing that with Chrisy, who is not here to tell about it. Chrisy was not there last year so either it was the year before, or we emailed about it.
I will have to look it up, but Dr. Slamon moderated a presentation for an evening session that some of us went to. He may have been answering a question after the event ended. So, I could well have heard that twice.
Maybe Alice or someone else can add something.
__________________
"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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10-11-2013, 11:10 AM
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#10
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: How long Should I continue herceptin ?
Thanks Steph
I am trying to get my information together as it seems to be becoming an issue at my centre that they stop herceptin if NED at 5 years. As there's very little research out there I felt a view from Dr Slamon would be very valuable.
Ellie
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10-11-2013, 03:18 PM
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#11
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: How long Should I continue herceptin ?
Ellie -
Did you see Leah's thread about going to a BC meeting where Dr. Slamon will speak?
She will try to find out more next week directly from him. (If she can do so well with Montel, she can approach the great doctor!)
__________________
"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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10-12-2013, 04:13 AM
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#12
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: How long Should I continue herceptin ?
Thanks Steph, I missed that post completely. It would be just brilliant if she could find any information out !
Ellie
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10-12-2013, 06:37 AM
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#13
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Senior Member
Join Date: May 2012
Location: Bethlehem PA
Posts: 395
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Re: How long Should I continue herceptin ?
Hi Ellie, Steph and Raquel,
I will be listening intently to what Dr. Slamon has to say on Tues. and will report back.
Last night I was told that as the "special" guest of a "special" guest (my friend Susan) she and I have been invited to a private reception with PA Gov Corbett wife (also named Susan) and (my friend is pretty sure) Dr. Slamon and the two other award recipients.
If I get a chance to speak to him I will definitely ask this question for you. My plan also is to give him a Thank You card (on which I have included a link to HER2Support) and a picture of my daughter (on which she wrote "thank you for saving my mommy")
I am very excited to go to this conference and over the moon that I might get to talk with Dr. Slamon. I told my husband I feel like a teenager who just found out she may get to meet her favorite rock star....
I will let you know what happens.
Best
Leah
__________________
 39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
www.onmywaytosurvivorhood.blogspot.com
www.thechemobag.com
www.facebook.com/thechemobag
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10-12-2013, 11:56 AM
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#14
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: How long Should I continue herceptin ?
Hi Leah
Thank you so much for offering to ask our hero the question! As there is so little research on how long to stay on herceptin if stage 4 and NED I feel his opinion is so valuable. Not only is he a brilliant researcher he is also an excellent clinician so I can't think of anyone better to answer the question!
Ellie
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10-14-2013, 12:39 AM
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#15
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: How long Should I continue herceptin ?
I would try to stay on it as long as possible. I was on it for 6 years and hoped it would be enough but we'll have to see.......I'm now 2 years out from there.
__________________
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10-14-2013, 04:21 AM
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#16
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: How long Should I continue herceptin ?
Hi Sarah
May I ask why you came off at 6 years?
Ellie
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10-14-2013, 11:22 AM
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#17
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Re: How long Should I continue herceptin ?
My fav onc wanted me to stop at 5 yrs. I couldn't let it go.
Orig dx w/stage 4 invasive lobular pleomorphic bc, involving 2 out of 21 nodes ('95) pre Vit H access as it was in clinical trails -- I recurred in '98 (tumors throughout my liver). I was told grimly and hesitantly that what I had was INOPERABLE, INCURABLE and that I WOULD BE ON LONGTERM CHEMOTHERAPY FOR THE REST OF MY LIFE. Herceptin became fast-tracked to all metastatic bc-ers 1 mnth after my metastasis.
So, when I could no longer tolerate Taxotere (fluid around my lungs and heart and lots more) after 9 mnths, I went on just Vit H. I intended to remain on it -- forever. For the rest of my life, which I believed would be well into my 90s...
When onc wanted me to stop after 5 yrs, I resisted. Strongly. I remained on for 10 yrs. Onc then drew line in the sand and pushed me.
I've now been off for 5 yrs and am still STABLE. I am now up to annual CTs (chest/abd/pelv), ev 6 mnth bld work including 2 tumor markers, ev 6 mnth exam (mnthly self exam), mammo w/sono 3 mnths after CT...
I would have to say, Don't let go of your safety net just yet. I am not a medical professional. But, I agree, too many go off and have recurrence I've noted, and it just isn't worth risking it, IMHO...
Sending you love,
Andi
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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10-15-2013, 03:13 PM
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#18
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Senior Member
Join Date: May 2012
Location: Bethlehem PA
Posts: 395
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Re: How long Should I continue herceptin ?
Hi Ladies,
I just got home from the PA BC Coalition Conference. A wonderful, informative day. Empowering.
I was able to meet (hug and kiss) Dr. Slamon briefly. I did ask him point blank how long he thought a stage 4 who is NED should remain on Herceptin and his answer was "3 to 5 years".
I have to gather my thoughts and notes on the day and then I will post more about it.
Very humbled and thankful right now
Leah
__________________
39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
www.onmywaytosurvivorhood.blogspot.com
www.thechemobag.com
www.facebook.com/thechemobag
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10-16-2013, 05:36 PM
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#19
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: How long Should I continue herceptin ?
Hi Raquel,
I was on Herceptin and NED for 8 years. I went on a Herceptin holiday and within a 4 month period developed 2 small tumors on my lungs. I am back on Herceptin, the tumors remain but have not grown. Going off for me was a tough call. After consulting with oncologists at Yale and Sloan, it was clear there was no recommended protocol. Since I have resumed Herceptin, my oncologist says...."if it is working? Don't change anything; not even your underwear....!!"
Good luck with this tough decision.
XO
__________________
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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10-17-2013, 05:55 AM
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#20
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: How long Should I continue herceptin ?
Hi Leah
Many thanks for asking our question. This period seems to be gaining popularity with oncs here so I am interested that they are following what Dr Slamon recommends!
Kim
You were very much in my thoughts when I replied to this thread. It's very clear that we really are still a long way off understanding fully the impact of herceptin on individual tumours and whether/ how this is influenced by the genetic make up of the individual tumour and the immune system.
Ellie
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