View Full Version : when tykerb/xeloda don't work, what next?

10-10-2007, 10:24 AM
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
good luck to all of you (I've got Her2 but not IBC)

10-11-2007, 12:36 PM
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!

10-13-2007, 12:07 AM
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.

10-13-2007, 08:34 AM

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.


10-18-2007, 12:16 PM
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
PS what's an ERCP?

10-24-2007, 10:39 AM
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!

10-27-2007, 03:59 AM
how is the result of Tykerb with Xeloda

10-28-2007, 04:28 AM
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.

10-30-2007, 04:30 AM
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?

11-21-2007, 06:25 AM
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.

11-25-2007, 01:23 PM
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.

11-27-2007, 05:17 AM
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

11-27-2007, 09:15 AM
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..???

11-28-2007, 01:40 AM
Thanks run I'll check it out.

11-29-2007, 10:18 AM
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.

11-30-2007, 10:34 AM
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

12-02-2007, 02:12 AM
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....

12-03-2007, 10:20 AM

sarah try this for some reference

12-03-2007, 10:23 AM
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.

12-03-2007, 11:14 AM

12-05-2007, 04:17 PM
Trastuzumab-DM1 (T-DM1) is a first-in-class HER2 antibody-drug conjugate (ADC) in development for HER2-positive breast cancer (BC). T-DM1 is designed to combine the biological activity of trastuzumab (T) with the targeted delivery of a highly potent antimicrotubule agent (DM1) to HER2-expressing cells. Focusing such chemotherapeutic agents on tumor cells via high-specificity monoclonal antibodies that bind unique and/or over-expressed cell-surface tumor antigens is intended to improve the therapeutic window for such agents, allowing their potential to be applied to the clinic.
DM1 binds to tubulin competitively with vinca alkaloids, but 20-100 times more potently than vincristine. Its parent molecule, maytansine, has induced responses in patients (pts) with breast and lung cancer, with principal adverse events (AEs) of nausea, vomiting, diarrhea, and sensory neuropathy. The stable MCC linker molecule was engineered to potentially enhance the therapeutic window of DM1 by improving exposure to T-DM1 and minimizing exposure to free DM1. T-DM1 is the first ADC with an MCC linker in clinical trials.
T-DM1 binds to HER2 with affinity similar to that of T and is internalized via the normal ongoing HER2 internalization process. T-DM1 has activity in both T-sensitive and T-insensitive HER2+ BC xenografts; its principal preclinical AEs were reversible transaminase (TA) elevations, reversible decreases in platelets, and neuropathy.
This ongoing first-in-human phase I study is evaluating the safety and pharmacokinetics (PK) of T-DM1 given IV to pts with advanced HER2+ BC who have progressed on a T-containing regimen.
Nineteen pts (median age 50 (range 35-70); all PS 0-1); median number prior chemo regimens 8 (range 2-18) have received 83 doses of T-DM1 at 6 dose levels (0.3-4.8 mg/kg) on a q3 wk schedule. Related mild-moderate AEs include TA elevations (grade (gr) 1, 4 pts; gr 2, 1 pt), thrombocytopenia (TCP; gr 1, 5 pts), fatigue (gr 1, 5 pts; gr 2, 1 pt), anemia (gr 2, 2 pts), and peripheral neuropathy (gr 1; 1 pt). Related gr 3-4 AEs have been limited to rapidly reversible TCP (gr 3, 1 pt; gr 4, 2 pts). There has been no cardiac toxicity. T-DM1 clearance decreased with increasing dose as predicted by preclinical modeling. Four of 16 pts treated at or below the MTD have had partial responses; three are confirmed and ongoing after 1.7-5.5 months.
The MTD of T-DM1 given IV q3 wks is 3.6 mg/kg; TCP was dose-limiting at 4.8 mg/kg. At the MTD, gr http://www.marathonmultimedia.com/graphics/alphabet/ge.jpg2 AEs related to T-DM1 have been infrequent and manageable. T-DM1 PK is consistent with q3-week dosing. Objective tumor responses have been observed at doses at or below the MTD. Phase II trials in advanced HER2+ BC are being initiated; weekly dosing is also being explored.

12-08-2007, 02:10 AM
This sounds like a very hopeful drug. thanks for making us all aware of it.
I know that for Lyme disease they sometimes gave the patient a slight dose of malaria and then treated them so that way they could "get into the brain" and destroy the Lyme disease.
Sometimes cures seem so close but still so far away.
thanks to all of you. So nice to have such a wonderful community of friends to turn to for help, particularly when you feel lost and worried.
Our friend is courageous and a fighter, so that's good.
hugs and love

12-21-2009, 02:45 AM
I have been on tykerb+xeloda for about a year or so.
I have seen little if any mets disappearing. I was wondering if 5fu added to the mix would help.. This is my thoughts....Has anybody tried this combo??any suggestions.
It is so depressing to look at my chest.. It is red, rashy, some (afew) have what looks like it is infected. My whole chest (with the exception) of a few areas is now complety
covered in breast cancer.I had a pet scan,done and it says..." no signs of cancer".Tell that to my chest..!!
I think this is so sad to look down at my chest and see this "mess". It was bad enough to get the inflammorty so far, I have taken gemzar,taxol, 5fu cream, herceptin (4doses) heart cannot handle it.. my ejection fraction is now 25%to 30%.
xeloda, tykerb.I guess it is because I have to look at at least once a day.
radiation treatments.. This is my thoughts....
. , My whole chest (with the exception) of a few areas is now complety
covered in breast cancer.I had a pet scan,done and it says..." no signs of cancer".Tell that to my chest.. so far, I have taken gemzar,taxol, 5fu cream, herceptin (4 doses)
xeloda, tykerb.I guess it is because I have to look at at least once a day.
Thanks for asking about Luke.. He is steadly improving .. Here is the rub, the stronger he gets, the further on down the list of people needing a lung transplant, who are "worse" than him.He gets bumped on down to another level.
Ironic isn't it???
He had a lung waiting at Shands, but was too sick to have the procedure.. Strange isn't it??? The better he gets along, the Lower he goes down on the "waiting" list.
He is still at Shands and they are talking like it will be sometime before he comes off the inactive list , to an
active slot.
I feel like I am going to eventually lose it.. maybe, I already have, and just don't know .?
this will be my first Christmas in 28 years, we have been married. That we will not be together. I know other people on this site , with problems worse than mine.. I guess I need to vent.. sorry.....Charlotte
I am not trying to be depressing, but it is hard to not be, with all the stuff going on.

Ellie F
12-23-2009, 02:33 PM
Hi Charlotte
What about a T_DM1 trial? i know these are difficult to find but Vickie H was suffering skin mets badly and managed to get on this trial and last posting suggested it was working as the mets were receeding