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02-26-2008, 07:53 PM
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#1
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Senior Member
Join Date: Apr 2006
Posts: 63
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Herceptin + Tykerb - anyone?
Hi,
With Lani's recent post of Dr. Osborne's Her2 targeted therapy combination trial, I was wondering if there are any individuals on the board who are currently being treated with Herceptin + Tykerb.
There are a number of current ongoing clinical trials of the combination and I believe there were a couple of individuals with oncologists that prescribed the combination off-label.
Anyone? It would be great to hear how you are doing.
Thanks in advance for any responses.
Regards,
Amy
__________________
Amy age 37 at dx
Feb 2008 Multifocal DCIS
Apr 2008 Bilateral Mastectomies
Sister to Laura age 37 at dx
April 2006
9 cm ER-/PR- Her2 +++/bone mets
neoadjuvant TCH plus Zometa
November 2006
bilateral mastectomy - Change to ER+/PR- Her2 +++
January 2007
innumerable tiny brain mets - WBR
March 2007
good response to WBR - some gone, all smaller
currently on Lapatinib and Xeloda
Feb 2008
Brain MRI: brain mets went from innumerable (jan '07) to 5 (june '07) to 3 (oct '07) to 1 that is getting less conspicuous(feb '08) PET/CT: Slight uptake in some sclerotic bone mets
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02-26-2008, 09:24 PM
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#2
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Hi Amy! My wife, Nicola was one of the first to sign up for a clinical trial of Tykerb(Lapatinib), Taxol, and Herceptin. They wanted to see the effects of the Lapatinib/Taxol combo. She did great for 15 months, and then progressed slightly, so they had to pull her from the clinical trial. Tykerb is one of the few chemo. drugs that is effective through the blood/brain barrier, so it seems that, from my layman's point of view, that your onc. is on the ball. Common Tykerb side-effects include diarrhea, and common Herceptin side-effects include runny nose, coughing, nosebleeds (sometimes). Many women on this site have alot more to add than I do, and I'm sure they will chime in. Andi has been on herceptin for 10 years! I'm praying for you, Amy, Love, Bill
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02-27-2008, 09:44 AM
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#3
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Herceptin tykerb too
Hi Amy-
I've been on Herceptin Tykerb combo for about 8 or 9 weeks.
I don't have any scan reports but I am doing fine on that combo regarding side effects. -- 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.
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02-27-2008, 10:31 AM
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#4
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Senior Member
Join Date: Apr 2006
Posts: 63
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Thanks, Flori.
I looked back in your posts but didn't see the answer to this: Are you in a clinical trial or is your doctor giving you the combination off-label? Thanks again for your response.
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02-27-2008, 10:57 AM
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#5
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Since I was on tykerb xeloda we continued with the tykerb and have added herceptin. I think that once a drug is approved they don't usually take it away from you but who knows with the insurance.
Best
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.
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02-27-2008, 11:33 AM
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#6
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Senior Member
Join Date: Nov 2007
Posts: 210
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ask your doctor about the herceptin-dm1 trial.. many on this board are on this clinical trial..
http://www.clinicaltrials.gov/ct2/sh...ow_locs=Y#locn
they have both a once a week.. phase 1 trial and once every 3 week trial..phase 2 |
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02-29-2008, 10:18 PM
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#7
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Amy,
I was on the combo and it held off progression for about 6 months. Then markers began to rise and scans confirmed progression in bones. Now I am back on Gemzar and Herceptin.
Good Luck, Carolyn
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03-04-2008, 12:48 PM
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#8
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Senior Member
Join Date: Nov 2007
Posts: 210
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carolyns.. have you talked to your md about the tras-dm1 to replace the herceptin..
one of genentech's lead trial docs shani modi gave this presentation last sept 07..
http://www.medscape.com/viewarticle/570430
the tras-dm1 starts around slide 15..
run to live..
here are the florida sites.
<TABLE cellSpacing=0 cellPadding=2 border=0><TBODY><TR><TD class=header3 noWrap colSpan=5>United States, Florida</TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=2>Bay Area Oncology </TD><TD class=spacer><TD class=header3 noWrap>Recruiting</TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Tampa, Florida, United States, 33607 </TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Contact: Julie Hahn 813-875-2300 ext 28 jhahn@bayareaoncology.com </TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=2>Florida Cancer Care </TD><TD class=spacer><TD class=header3 noWrap>Recruiting</TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Davie, Florida, United States, 33328 </TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Contact: Joel Espinoza 954-262-7606 crc@flcancercare.com </TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=2>Gulfcoast Oncology Associates </TD><TD class=spacer><TD class=header3 noWrap>Recruiting</TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Saint Petersburg, Florida, United States, 33705 </TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Contact: Margie Blasek 727-821-0017 mblazek@gulfcoastoncology.com </TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=2>Hem/Onc Assoc - Treasure Coast </TD><TD class=spacer><TD class=header3 noWrap>Recruiting</TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Port St Lucie, Florida, United States, 34952 </TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Contact: Christine Baker-Gerdes 772-408-5159 cgerdes@hemoncfl.com </TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=2>Lynn Cancer Institute - West </TD><TD class=spacer><TD class=header3 noWrap>Recruiting</TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Boca Raton, Florida, United States, 33428 </TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Contact: Jacqueline Perez 561-883-7554 jperez@lrccw.com </TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=2>Mayo Clinic </TD><TD class=spacer><TD class=header3 noWrap>Recruiting</TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Jacksonville, Florida, United States, 32224 </TD></TR><TR><TD class=spacer><TD class=body3 noWrap colSpan=5> Contact: Leandra Rigby 904-953-6119 Rigby.Leandra@Mayo.Edu </TD></TR></TBODY></TABLE> |
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