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11-21-2014, 10:25 AM
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#1
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Senior Member
Join Date: Dec 2005
Posts: 148
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Herceptin plus tykerb after kadcyla
Dear All
I am thinking out loud here and want to hear from all of you
Or want you to pose this question to your oncologists as I live in India and the oncologist in the USA are much more experienced and updated.
I am taking kadcyla right now out of my pocket and will somehow manage 6 cycles after stretching our finances as kadcyla is damn expensive.
We went for it as my cancer was pretty advanced MS has spread big time to bones, spine, lung, liver and brain they said were numerous small skeletal masses.
The intent is that we take 6 cycles of kadcyla and hope it kills all the cells and then in maintenance we go for a monthly herceptin and maybe tykerb.
This might sound unique but that's why I am posting here to listen to your thoughts or if you can help post this to your onc on my behalf and see what he feels.
Would be obliged to hear from all of you
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11-24-2014, 05:37 PM
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#2
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Senior Member
Join Date: Dec 2005
Posts: 148
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Re: Herceptin plus tykerb after kadcyla
Please post your views
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11-24-2014, 11:22 PM
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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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Re: Herceptin plus tykerb after kadcyla
It is good thinking to find something as maintenence after kadcyla, but many stay on it until it stops being effective. If you must go off due to costs, or toxicity, then yes, herceptin is good for sure. I think that Perjeta is a better pairing than Tykerb.
Hope others will weigh in, too.
__________________
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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11-25-2014, 05:31 AM
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#4
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Senior Member
Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
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Re: Herceptin plus tykerb after kadcyla
If kadcyla is every 3 weeks, I don't know if I would take 6 doses before scanning. In the US, thy will usually scan after 3 months. So, after 4 doses you may want to scan to see what is happening . If it is not working , it wouldn't pay to get 2 more doses especially because it is so expensive for you.
If you are not Ned after scanning, you may want to try taxotere/ herceptin and if you are, it woud be reasonable to be on herceptin or herceptin/ tykerb
Laurie
__________________
diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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11-25-2014, 06:20 PM
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#5
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: Herceptin plus tykerb after kadcyla
socalgal -ever tried t dm-1 ? plus xgeva - or tdm-1 ,perj and xgeva. herc and perj are biologics , not chemos. may not be strong enough ... if u get to ned the gl2 vaccine is promsing for her2 .
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11-26-2014, 06:00 PM
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#6
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Senior Member
Join Date: Dec 2005
Posts: 148
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Re: Herceptin plus tykerb after kadcyla
Hi Phil
I get your point on herceptin being biological and alone not being as strong.
Maybe we look at adding taxol on a 6 weekly dose, thinking out loud.
Regarding the vaccine, is that available
Now off label or is it only in trial.
In case it's in trial would you know who I can contact to and see if it can be done from India
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11-26-2014, 07:18 PM
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#7
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Senior Member
Join Date: Mar 2014
Posts: 95
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Re: Herceptin plus tykerb after kadcyla
Hi Phil,
I would also be interested in finding out more about the vaccine trial you mention. Internet search has not given me anything usable so far. This link looks promising, bu I can't open it for whatever reason: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3745370/
Could you maybe indicate where this is currently trialed? So I can find out what the prerequisites are to potentially participate in a trial? Or whether this available at all in Canada?
Thanks!
__________________
Annette
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03/2014: Diagnosed with ER/PR-, HER2+++ MBC (bone mets, oligometastatic)
04/2014: Started 6 cycles of "PHD" (Perjeta, Herceptin, Docetaxol)
07/2014: Finished 6 cycles of PHD; restaging; 2 bone mets are sclerotic - looks like Herceptin and Perjeta is working
10/2014: STABLE!
01/2015: STABLE!
04/2015: STABLE!
08/2015: STABLE!
12/2015: BRAIN METS. BODY STABLE.
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11-28-2014, 08:42 AM
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#8
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: Herceptin plus tykerb after kadcyla
sorry - GP2 vaccine at md anderson , http://www.facebook.com/l.php?u=http...ml&h=HAQEHWg7Q
this is from a post in our Activist FB grp - Our Her2cancer Struggle . u have to be in " remission ", not sure of exact definition but very promising for ear future tx. if they can get ebola vaccines out in months - why not this one. hmmm -maybe another petition |
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11-28-2014, 08:43 AM
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#9
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: Herceptin plus tykerb after kadcyla
near future tx.
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11-28-2014, 09:15 AM
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#10
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Senior Member
Join Date: Mar 2014
Posts: 95
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Re: Herceptin plus tykerb after kadcyla
Thanks so much Phil, I'll take a look.
__________________
Annette
----------------------------------------
03/2014: Diagnosed with ER/PR-, HER2+++ MBC (bone mets, oligometastatic)
04/2014: Started 6 cycles of "PHD" (Perjeta, Herceptin, Docetaxol)
07/2014: Finished 6 cycles of PHD; restaging; 2 bone mets are sclerotic - looks like Herceptin and Perjeta is working
10/2014: STABLE!
01/2015: STABLE!
04/2015: STABLE!
08/2015: STABLE!
12/2015: BRAIN METS. BODY STABLE.
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