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Old 07-12-2007, 08:48 PM   #1
LauraP
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Location: Overland Park, Kansas
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Herceptin/Tykerb/Xeloda?

Hi,

My name is Laura. I have not posted on the site much, but I use it quite a bit to gain knowledge from you all. I have been on herceptin for two years and my onc thinks it is working to stave off my cancer. However, most recently, they have determined (through PET scan)that two nodules on my lungs are cancerous. They want to keep me on herceptin, but are also considering putting me on tykerb with xeloda before any surgery. I had a tumor on my liver two years ago and my liver has been clean ever since. I do believe that herceptin has kept these tumors a manageable size (approx 1cm each), but I understand the nature of this chronic disease.

I read the thread about tykerb and xeloda, but was just curious if there are any more insights you all might have regarding these meds coupled with herceptin. I will do my own research, but even if you could help me know what questions to pursue...I would greatly appreciate it!

Blessings,

Laura
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Diagnosed January 2005 at 32
Dx: Stage IV IDC with DCIS surrounding tumor, ER-, PR- HER2+, 1.6 cm primary tumor, grade III, 1/5 + nodes (.3mm focal point), 1 tumor on liver (1cm)
Surgery: Bilateral mastectomy with TRAM flap reconstruction
Treatment: 4 rounds dense dose EC, 12 rounds Taxol + Herceptin, indefinitely

Restaging in August 2005 at 33
Dx: Stage IV, 1 liver met (1cm),
Surgery: Liver resection as tumor was small enough to remove, interoperational sonogram identified no other liver lesions.
Treatment: 6 rounds of taxotere, carboplatin completed in January 2006.

Restaging in July 2007:
Dx: 2 lung lesions approx 1cm each
Surgery/treatment: in discussion with tumor board an oncology team.
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Old 07-12-2007, 10:03 PM   #2
SoCalGal
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I asked my onc about adding herceptin to tykerb and he said there was no data to support that. He said that they think tykerb is a better drug than herceptin and it should work better than herceptin and there is really no reason to add herceptin to tykerb. Just giving you info - I don't know if I agree with him. Many oncs are giving both to be safe...I might ask mine to add it in after I start my new combo.
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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.
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Old 08-06-2007, 01:06 PM   #3
awjkej
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I asked my onc about herceptin and tykerb being given together, b/c intuitively it makes sense - one hits the tumor from the outside and one hits it from the inside. He told me that yes it does make sense on paper, but that the data isn't there yet, and he wants to wait til they know nore about the toxicity of the two drugs given together.

Is there anyone who is currently on both????

Anne
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"Faith is the bird that feels the light when the dawn is still dark." --Rabindranath Tagore


Diagnosed Jan 2003
Bilateral Mastectomy (right prophylatic) Feb 2003
No reconstruction and no prosthesis - what you see is what you get :-)
6 rounds A/C ending August 2003
Tamoxifen til October 2004
Bone mets diagnosed October 2004
Herceptin (weekly) & Zometa (monthly) December 2004 - June 2007
Arimidex, Faslodex
Oophorectomy October 2005
Rads to left hip November 2005 - December 2005
Zometa quarterly now January 2007
Taxotere December 2005- July 2006
Tykerb (1250 mg) and Xeloda (3300mg) July 2007
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Old 08-07-2007, 01:38 AM   #4
Esther
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I have been wondering about this as well. Herceptin was very good to me for 3 1/2 years, and there are currently trials being conducted to see if the combination of Herceptin/Tykerb have synergistic effects together.

There is no concrete data on it, but I'm thinking of asking my onc about putting me back on Herceptin as well.

If there was toxicity, we should be able to stop the Herceptin, I would think? I was initially on Herceptin/Tykerb/Xeloda for the first 6 weeks that I was on Tykerb, and did not notice any increased side effects. My onc took me off Herceptin, for the same cautious reasons other onc's have given. My CA 27-29 plunged 300 points in the first 3 weeks I was on that combination.
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Old 08-07-2007, 06:45 AM   #5
Rupali
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I think a good approach might be to have a dose of herceptin once every 3 months and have Tykerb regularly. As Herceptin stays in the system for at least 18 weeks so this would help to make use of the synergestic effect as well reduce the toxicity.
I proposed this to my onc and he thinks this might be a good idea.
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Old 08-07-2007, 08:53 AM   #6
doh2pa
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Looks like many of us are in the same boat. I am on Tykerb/Xeloda and talked to my onc about going back on herceptin too. Although I had no side effects on herceptin, he is concerned about the combined cardiac risk for herceptin/tykerb. He said this is being studied and is hoping some data will get presented at the big cancer meeting is December (is that ASCO??). So we are in a holding pattern.

So glad you started this thread. Would love to hear from anyone's onc who is letting them take the plunge!

Donna
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Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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Old 08-07-2007, 09:01 AM   #7
Rupali
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There is a big clinical trial called ALTTO which is starting in which they wil give both Tykerb and Herceptin together.
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