HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 09-29-2014, 10:04 AM   #1
Rupali
Senior Member
 
Join Date: Dec 2005
Posts: 148
Tykerb + Xeloda success stories

Dear All,
I am utterly confused at present on the chemo combination. More I read on the internet more I get confused as to whats the best combination for me.
I have been diagnosed with Metastatis BC with mets to spine, brain, liver, lung and subclavical bone.
The treatment plan has been as below:
Whole Brain radaition 10 sittings done
Started with Tykerb + Xeloda combination today.

Can all of you who have been on Tykerb + Xeloda let me know on your success. Please please rspond.

I have been thinking whether adding Herceptin would be a better option or starting with TDM1 or with Perjeta...
What would be the best option, please give your view.

Thanks,
Rupali
Rupali is offline   Reply With Quote
Old 10-02-2014, 08:07 AM   #2
kk1
Senior Member
 
Join Date: Sep 2005
Posts: 182
Re: Tykerb + Xeloda success stories

Hi;

I had good success with Tykerb, xeloda, and Herceptin as a triplette together. But at that time TDM1 and Perjeta were not around.

In theory Tykerb can cross the blood brain barrier. Note there have bee several studies in the metastatic setting which it was shown that laplatinib + chemo + herceptin works better than Laplatinib and chemo alone, particularly in Her2+ and ER+ patients.

From last Feb ASCO meeting by Dr. Rugo
http://www.ascopost.com/issues/febru...e-in-2013.aspx

"We have learned that we can improve outcomes by overcoming resistance through combined signal blockade targeting different parts of the HER pathway. We are already doing so by adding lapatinib (Tykerb) to trastuzumab, and have seen that pathologic complete response rates are high—47% to 60%—though lapatanib does add toxicity. As a single agent (combined with chemotherapy) lapatanib is inferior to trastuzumab, probably because it is difficult to administer easily (due to unpredictable toxicity, especially diarrhea). In addition to the data seen in the neoadjuvant setting, the single-agent lapatinib arm in the eagerly awaited adjuvant ALTTO study was closed due to futility, meaning that lapatinib with chemotherapy in the adjuvant setting was inferior to trastuzumab or the combination of trastuzumab and lapatinib. This is in keeping with other studies showing that lapatinib by itself is inferior, though it can be an important partner to trastuzumab. Other means of combined HER family blockade are needed."


I think most of us with mets would say to never drop the herceptin from the plan. Even if you have progressed, add to it and block it has many ways as you can.

all the best
__________________
KK1
April 2004 de novo metastatic left breast 1.5cm her2++,er+/pr+ with 2 small liver mets
weekly taxotere,herceptin, xeloda
Sept 2004 NED-3 herceptin, zoladex,aromasin
Dec 2006 recurrence in liver
Feb. 2007 liver resection left lobe removed-herceptin, zoladex, switch to Arimidex
NED 16 months added zometa
May 2008 new lesion in liver 15mm Tykerb/Xeloda/Herceptin
July 2008 stable...yeah!
Sept 2008 NED again !!!
Jan 2009 fell off the wagon again spot back in the liver and fell out of menopause.
Feb 2009 RFA and 2nd liver resection to remove spot ---back on the NED wagon again continue Tykerb, Herceptin.
March 2009- oophrectomy added Femara and bi-annual Zometa
May 2009- scans clear but suspect lung nodule
June 2009- Lung VAT wedge resection to remove nodule---fungus ball not cancer!! phew
Aug 2009- NED
Nov 2009-scans again clear YAHOO!
March 2010- scans clear continue Tykerb, Herceptin, Femara, Zometa Q6mo
Nov 2009-Nov 2019 scans clear done every 6 months


Feb 2020 - Fell out of the NED wagon hard! single liver lesions and large infect cyst. 3 weeks in ICU.
March 2021- 5 cycles perjeta, herceptin, navelbine. lesion stable.
June 2021 - 3rd liver resection to remove single liver lesion. Continued perjeta, herceptin.
Nov. 2021- PET scan show 5 hot nodes near liver. 9 cycles Kadcyla
June 2021- PET scan shows progression. nodes size unchanged but even more SUV uptake.

July 2021- start ENHERTU

Last edited by kk1; 10-02-2014 at 08:24 AM.. Reason: added more information
kk1 is offline   Reply With Quote
Old 10-02-2014, 05:52 PM   #3
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
Re: Tykerb + Xeloda success stories

Brain and Spine involvement is serious. Are you in the US or somewhere else? I am thinking that I would go with Intrathecal Herceptin (and if outside the US Perjeta) for that issue. Perjeta and Herceptin systemically is showing really good results for the other areas. Send me a private message for more info on why.
Rolepaul is offline   Reply With Quote
Old 11-13-2014, 12:31 AM   #4
waterdreamer
Senior Member
 
waterdreamer's Avatar
 
Join Date: Jan 2010
Location: Thousand Oaks, California.
Posts: 199
Re: Tykerb + Xeloda success stories

I would advise TDM-1 (Kadcyla) and brain radiation. The TDM-1 includes Herceptin. Please keep us updated.
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.


Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
waterdreamer is offline   Reply With Quote
Old 11-13-2014, 08:59 AM   #5
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
Re: Tykerb + Xeloda success stories

Some great results with Intrathecal Herceptin and systemic TDM-1 with Nina. With your additional mets, I would do systemic TDM-1, Perjeta, and Taxane. The three drug regimen is tough on side effects, but pretty darn effective. I think this will be the preferred method in five years, with IT Herceptin/Toptecan for the brain, but you need to start now.
Rolepaul is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 04:06 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter