 |
06-18-2010, 06:17 AM
|
#1
|
|
Senior Member
Join Date: Jan 2010
Posts: 170
|
Herceptin holiday at stage IV?
Hello all,
First, I have wonderful news to share. My first grand child was born on June 5th. A beautiful little girl named Lauren Rae. I am leaving on Mon. to go help and love her up.
Second, I met with my onc yesterday and after discussion, decided to stop Herceptin, continue Zometa, do scans every 12 weeks to see how it goes.
Last scan on May 26th still NED.
He said he has not seen any data to show that continued maintenance on Herceptin delays progression vs Herceptin holiday. He also would like to give my heart a break. MUGA still ok at 53 but down from 64.
If anyone has information to the contrary would much appreciate hearing it.
I have to admit I am nervous stopping Herceptin, unless I am one of those most fortunate people that escapes this disease.
Thanks for any help, and I will be checking in while doting on my new baby.
Best to all,
Emelie
__________________
Nov. 2006-IDC with Her2 +++
A/C for 3 rounds
Dec. 2006- Herceptin and Taxotere
March 2007-MRM with 8 of 14 lymph node involvement
May 2007-36 Rads
Sept. 2007- Stopped Herceptin
Jan. 2010- CT scan shows enlarged lymph nodes in sternum and lung involvement
Feb. 2010-PET scan shows mets to liver, lung, lymph nodes and bone
Feb. 2010- Started Herceptin/Taxol and Zometa
April 2010-PET scan clear. Herceptin and Zometa
June 2010- Stopped Herceptin continue Zometa and still NED
August 2010-Back on Herceptin and Zometa every 3 weeks
August 13, 2010- Had another port placed
August 24, 2010- PET scan clear. Herceptin and Zometa every three weeks
Nov. 2010-PET scan clear
Feb. 2011-Brain MRI clear
March 2011- PET scan clear
May 2011- PET scan clear
Sept. 2011- PET, Mammo, Bone Scan all clear- Herceptin only
March 2012-Recurrence in lungs and tumor around pota hepatis artery. Added Navelbine to herceptin
April 2012- Entered palliative care
June 5, 2012-Entered hospice care
Planning my memorial
|
|
|
|
06-18-2010, 08:05 AM
|
#2
|
|
Senior Member
Join Date: Oct 2009
Posts: 46
|
Re: Herceptin holiday at stage IV?
Hi Emelie,
Congratulations on your new grandchild! I would go for another opinion at a major cancer center. I believe that it is NOT standard of care to discontinue Herceptin in stage IV her2 positive women who are stable on Herceptin. In the US, most stage IV women continue on Herceptin as long as it is working, and in many cases beyond progression. For example, I have been on Herceptin since March 2007. Some on this board have discontinued Herceptin, but this was after many years of stability. It makes sense (I think) for you to have a chemo holiday to allow your ejection fraction to bounce back. But this holiday should not be indefinite. You should continue to have your heart monitored and make a decision for further treatment in light of these results. I think it would be highly unusual for a Her2 positive metastatic woman who is less than a year out from initial treatment for metastatic disease not to be on any treatment at all. Unfortunately, I don't have any studies that support this approach at my fingertips. Hopefully, someone else will chime in.
Best,
JB
|
|
|
|
|
06-18-2010, 10:15 AM
|
#3
|
|
Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
|
Re: Herceptin holiday at stage IV?
I agree with JB but have no data. All Herceptin inserts from Genentech only state that it should be given as long as there are benefits and no cardiac problems. It also states you should discuss with your doctor.
I would get another opinion as JB suggests as all the women here who are Stage 4 continue on it (except some stop after being NED for many, many years)
__________________
Kind regards
Becky
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
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
|
|
|
|
|
06-18-2010, 11:31 AM
|
#4
|
|
Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
|
Re: Herceptin holiday at stage IV?
Hello Emelie -
Congrats on the grandchild! Aren't they a wonderful lift to our lot in cancerland?
If your onc has not sent you to a cardiologist, I would get your GP to send you. You had an 11 point drop in MUGA and that indicates a rest period (holiday).
If nothing is found to be wrong with your heart, try taking Coenzyme Q10 and getting in some light cardio workout to improve your heart muscle. Taxol was hard on me in the same way.
In three months, very likely another MUGA will be back up and you can resume Herceptin. Zometa will do nothing against soft tissue mets - only bone.
__________________
"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.
Last edited by StephN; 06-18-2010 at 12:26 PM..
|
|
|
|
|
06-18-2010, 11:53 AM
|
#5
|
|
Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
|
Re: Herceptin holiday at stage IV?
It seems there is more and more about benefit of continuing Her2 therapy. Recent articles suggesting extended H could gradually diminish cancer stem cells.
But if you have adequate kidney function and can continue Zometa, there is growing evidence of benefit outside of bone:
http://her2support.org/vbulletin/showthread.php?t=39563 |
|
|
|
|
06-18-2010, 11:16 PM
|
#6
|
|
Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
|
Re: Herceptin holiday at stage IV?
Congrats on the new baby!
I concur with Steph and all. GET ANOTHER OPINION. There are many ways to improve heart function by working closely with your medical team and also the coQ10, exercise, and diet.
Flori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
|
|
|
|
|
06-19-2010, 08:28 AM
|
#7
|
|
Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
|
Re: Herceptin holiday at stage IV?
Congrats on the grandchild. 2nd opinion sounds like sound advice. Do you take co-enzyme Q10? I started taking it early on after reading about taking it on this site to help keep the heart healthy and even though I only take 100mg a day (many of here take 3 times as much but spaced out through the day), my heart tests have stayed steady and I've been on Herceptin since 2004 although my onc has talked about stopping. I'll be having a Petscan soon and that should tell more. I don't have distant mets but regional invasive. How do you feel about stopping or not? also are you still taking AIs? seems they need balancing. maybe Lani and others will chime in on this.
__________________
|
|
|
|
|
06-21-2010, 12:33 AM
|
#8
|
|
Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
|
Re: Herceptin holiday at stage IV?
Hi Emilie
I was on herceptin for 4 years and then went off it. 8 months later scans showed multiple small mets in liver and small pleural effusion. I have been back on it (and abraxane) for 8 weeks and the pleural effusion has cleared and I will have a CT scan in 3 days to see if I am back in remission.
I would be very, very careful about going off herceptin. Get some Life Extension Foundation Q10 for your heart and your MUGA will improve to normal quickly..
I went off it to have a break from the sinus problems and I used to feel a bit down on the day I had herceptin..but I am prepared to put up with these minor side effects to stay in remission,
Cheers
Jackie (down under)
Last edited by jhandley; 06-21-2010 at 12:34 AM..
Reason: spelling
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 03:55 AM.
|
Linear Mode
