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Old 10-10-2007, 10:24 AM   #1
sarah
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when tykerb/xeloda don't work, what next?

Hello,
I have a friend with IBC, HER2, ER-. She originally had some luck with Navelbine and also xeloda for 2 months and Herceptin. Then the cancer started to spread and she was put on tykerb/xedloda - had to lower the oringinal dose of 8 pills a day to 4 because of side effects. Now her cancer is growing again it's in the glands behind the sternum.
any thoughts?
I thought maybe add back in Herceptin? Her onc called tykerb an accelerator??? I thought it was a variatin on Herceptin for Her2 cells.
Has anyone taken for instance Tykerb with Navelbine? any ideas?
need help ASAP
thanks
good luck to all of you (I've got Her2 but not IBC)
Sarah
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Old 10-11-2007, 12:36 PM   #2
Becky
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Can they use a taxane with tykerb and Herceptin (Taxol or Taxotere or Abraxane)? Has she used one of the taxanes already? If so and she progressed on it, it does not mean that a different one won't work.

Gemzar is another drug type to try but if she hasn't had a taxane yet, now is the time!
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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 13 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"
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Old 10-13-2007, 12:07 AM   #3
sarah
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thanks Becky, I'll give her your suggestions. unfortunately she's had taxol and taxotere with no results. also here it's against the law (probably because of GSK's rules to use it) to give tykerb with anything but xeloda.
thanks again and if you think of anything else, please let me know. My husband and I are very worried about her and what will help her quickly.
sarah
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Old 10-13-2007, 08:34 AM   #4
JEANB
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Sarah,

I have IBC and I also progressed on Xeloda/Tykerb. After the first 4 weeks, I had great results with my tumor marker dropping in half to 70. The best it's been all year. But after 12 weeks, I had significantly progressed with my tumor marker rising to 345 and severe abdominal pain. Pet scan showed nothing, but an ERCP showed the cancer was growing back in my liver and pancreas and now my duodenum(opening for small intestine) causing obstruction. I was feeling so sick and unable to eat much of anything.
We switched my chemo to Abraxane, Carboplatin and Herceptin. I really do think being off the Herceptin for the entire time I was on Tykerb/Xeloda was a big part of the rapid progression. Herceptin works synergistically with Abraxane & Carboplatin. Also Abraxane has better results than Taxol or Taxotere. I get this regimimen weekly..3 weeks on 1 off..herceptin weekly. It is working really well for me..Tumor marker dropped in half again and I'm down to 157 after just 3 weekly sessions. I believe in this combo and will be on this for several months..we may try Tykerb/Herceptin down the road after I get more stable.

Hope this helps.

Jean
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Jean B

Inflammatory Breast Cancer 2003
A/C Taxol dose dense regimen
6 weeks radiation
1 year Herceptin
NED for 2 years and 4 months
Recurrence in July 2006 with extensive liver mets over 70%, tumor obstructing bile duct-gallbladder, mets to spine and pelvis, abdominal lymph nodes enlarged, mass on pancreas.
Hospice called in until Gemzar and Herceptin started in Aug. 2006
May 2007 pet scan shows only 1 liver lesion 1.1 cm. bone mets gone, no enlarged lymph nodes.
June 2007-Switch to Tykerb/Xeloda because markers increased
Sept 2007-tumor marker 357-2.4 cm mass on pancreas,1 cm lesion on thyroid, duodenum and more liver mets.--switch to abraxane/carboplatin/herceptin and doing much better
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Old 10-18-2007, 12:16 PM   #5
sarah
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thanks Jean I'll pass this along and I wish you continued success with your new treatment.
She's started on Avastin (and been told that strangles the cell so no need for Herceptin) and Navelbine which has worked in the past for her. I wish she was also on Herceptin but if things don't improve, they'll add that in.
thanks again
Sarah
PS what's an ERCP?

Last edited by sarah; 10-18-2007 at 12:18 PM.. Reason: forgot a question
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Old 10-24-2007, 10:39 AM   #6
Sheila
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Sarah
I am wondering why no herceptin...I am on Avastin and taking Herceptin and Taxol...with very good results. Avastin blocks the blood supply to the tumor, but does nothing for Her2 receptors like Herceptin...she may request going back on it!
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is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 10-27-2007, 03:59 AM   #7
keshavguptaqt
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how is the result of Tykerb with Xeloda
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Old 10-28-2007, 04:28 AM   #8
sarah
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I agree Sheila, I also think she should be on Herceptin. My husband and I are having lunch with her today and we're sure to talk about things. I'll also write my onc friend in LA to see what he thinks.
all the best to you in your fight and thanks to all of you for your answers as I really don't know that much about IBC, being an HER2 person not IBC myself.
what a great site, great info and reassurance.
sarah
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Old 10-30-2007, 04:30 AM   #9
sarah
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Hello,
I asked an onc friend in LA if there was a problem with taking Herceptin with Avastin and he said
"There is a suggestion that adding Herceptin to Avastin may increase the risk of cardiac damage."
So what can she do to help strengthen her heart so she can take it again? any ideas?
thanks
sarah

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Old 11-21-2007, 06:25 AM   #10
sarah
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help again

Our friend with IBC, ER- Pr-, HER2+++ is not doing well on Avastin and Navelbine. She tried Tykerb and xeloda and failed. her oncologist said no Herceptin with Avastin because of heart problems. I think she should always be on herceptin but....... her blood pressure was very high, now low and her white blood cells are low - she gets neulesta.
Sheila I see you are on Avastin and Herceptin with good results - what is your heart test level and what is your ER? Was your doctor worried about your heart?
Jean _ are you ER- or ER+?
we are very worried for our friend and her husband died 2 years ago in an accident so it's tough for her. Her daughter is about 10,000 miles away and her mother is elderly.
We both live in France and generally the medical treatment is fantastic.
thanks
sarah
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Old 11-25-2007, 01:23 PM   #11
Becky
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Herceptin and Avastin cause differing possible problems. Avastin can cause high blood pressure (this is probably why your friend had high bp and now it is low (since she is off Avastin)). Avastin can also cause nose bleeds. Herceptin, as most of us know, can decrease the ejection factor and cause congestive heart failure. Getting both of these at one time can cause an enlarged heart so I can see her onc's reluctance since she got the high blood pressure.

Could he give Herceptin with Tykerb perhaps? Did she have carboplatin (perhaps with a different taxane and Herceptin)?

Gemzar with Herceptin? I am just thinking out loud for you.
__________________
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 13 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"
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Old 11-27-2007, 05:17 AM   #12
sarah
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thank you Becky.
I think they're very strict here about what they can give with tykerb - the doctor could go to jail if he doesn't follow strict rules.
She is now going to have a second opinion (but not until late january) with my oncologist who is always extremely up to date and I believe will do whatever is necessary for his patients. He got me on things that a less famous doctor couldn't but no one can argue with his reputation. plus he's a fuzzy, kind doctor, so I hope he will have something to say. unfortunately he works in the same cancer clinic as her doctor so may want to tread delicately but in person she should be able to overcome that.
we are worried. we know how serious inflammatory bc is.
her courage and inner strength are amazing.
As you mentioned: she had nose bleeds - finger bleeding - quite strongly. it's interesting also that she seems to get worst when:
she's off herceptin
in the winter
last december we were frantic for her and got her into a trial in LA for tykerb but then it came to France so she didn't have to travel there. now this year.
I really appreciate your suggestions. This site is a so wonderful. I wouldn't know where to turn.
love and hugs
sarah
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Old 11-27-2007, 09:15 AM   #13
runtolive
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i have heard of a phase 2 trial for her2 patients using TRASTUZUMAB-DM1... its herceptin + a toxin.. together....
its in early phase 2 studies its showing good disease management with fewer side effects than TYKERB / XELODA .. genentech is pretty positive about it from what i hear... other patients on this forum have used it.. i think lily equador..???
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Old 11-28-2007, 01:40 AM   #14
sarah
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Thanks run I'll check it out.
sarah
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Old 11-29-2007, 10:18 AM   #15
JEANB
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Sarah, I replied to your private message a few days ago. In case you did not get it, I am ER-, PR-, Her2+++, same as your friend. Abraxane, Carboplatin, Herceptin is working very well for me. Side effects are minimal, and only partial hair loss.
__________________
Jean B

Inflammatory Breast Cancer 2003
A/C Taxol dose dense regimen
6 weeks radiation
1 year Herceptin
NED for 2 years and 4 months
Recurrence in July 2006 with extensive liver mets over 70%, tumor obstructing bile duct-gallbladder, mets to spine and pelvis, abdominal lymph nodes enlarged, mass on pancreas.
Hospice called in until Gemzar and Herceptin started in Aug. 2006
May 2007 pet scan shows only 1 liver lesion 1.1 cm. bone mets gone, no enlarged lymph nodes.
June 2007-Switch to Tykerb/Xeloda because markers increased
Sept 2007-tumor marker 357-2.4 cm mass on pancreas,1 cm lesion on thyroid, duodenum and more liver mets.--switch to abraxane/carboplatin/herceptin and doing much better
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Old 11-30-2007, 10:34 AM   #16
sarah
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Jean,
many thanks, I did get your message and replied - hopefully you've seen it by now. we're in different time zones I think. I'm in France. (Also my internet connection has been intermittent and French customer service leaves a lot to be desired! That and the drivers are my pet peeves.)
I copied and pasted your email and sent it to her - she was very happy to hear how well it had worked for you and will definitely be asking for it. sounds miraculous. She's coming to lunch on Sunday and I'm sure we'll discuss it then as well as enjoy some wine and my husband's good cooking!
How very much I appreciate this site and all the wonderful members - it's so reassuring and makes me feel less alone in this journey.
wishing you continued good health.
love and hugs
sarah
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Old 12-02-2007, 02:12 AM   #17
sarah
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Dmi?

Hi Run,
couldn't find anything on DMI. any ideas where to look, checked genetech.
here's your post:
i have heard of a phase 2 trial for her2 patients using TRASTUZUMAB-DM1... its herceptin + a toxin.. together....
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Old 12-03-2007, 10:20 AM   #18
runtolive
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http://www.clinicalbreastcancer.com/...1/article2.php

sarah try this for some reference
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Old 12-03-2007, 10:23 AM   #19
runtolive
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from the imgn website
...

We’re delighted with Genentech’s progress with T-DM1. In July 2007, they began Phase II testing of the compound in patients with HER2-overexpressing metastatic breast cancer that’s progressed during prior treatment with a HER2-directed therapy. Genentech already has over 30 sites enrolling patients in the study listed on clinicaltrials.gov and plans to include 100 patients. They’re also continuing to report new Phase I data. At the American Society of Clinical Oncology (ASCO) annual meeting in June they reported that 3 of the 9 patients treated with T-DM1 at the maximum tolerated dose (MTD) had an objective response – even though all of these patients had cancer that progressed on treatment with Herceptin® plus chemotherapy. By the time of the European Cancer Conference (ECCO) meeting in September, 15 patients had received T-DM1 at its MTD, and 5 of these patients have had an objective response. Phase I findings also are scheduled for presentation at this year’s San Antonio Breast Cancer symposium, to be held about six weeks from now.
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Old 12-03-2007, 11:14 AM   #20
runtolive
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patent link for trastuzumab-dm1

http://appft1.uspto.gov/netacgi/nph-...+MAYTANSINOIDS
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