what drug works with tykerb?

[grandma2]

i'm going to have to stop xeloda again i think. have been so sick today and i'm only on 2000 since i couldn't tolerate 4000mg. i had such bad diarhhea other night and all day today. finally got that stopped and now so nauseous. i thought i was doing ok on the 2000mg then wham. getting so depressed. i know tykerb works better with xeloda but what if you can't tolerate it. is there anything else that can stop progression? is it worth taking tykerb without xeloda. i just took a kytril and hoping that works on the nausea with none of my weirde se's. i know i haven't been thru nearly what many of you have but i'm just so tired of feeling so sick. some encouragement badly needed. thanks gm

[ElaineM]

I don't know much about this, but I think there are members here who have tried Tykerb with various other drugs. I have read literature about using Tykerb with other drugs. If you can't tolerate the Xeloda keep reminding your doc about it and ask him or her to look for something else.
Everyone's body is different. The same things don't work the same for everyone. Ten different people can have 10 different side effects just because everyone's body is a little different. Sometimes docs forget that and keep prescribing the same combination to everyone. If your doc won't or can't help you it might be good to get a second opinion.
Different docs have different experiences with different people. All docs have different interests and tend to read up on things they are interested in more than other things they are not interested in.
By the way, have you tried fresh or dried ginger with hot water for nausea? Sometimes that helps. Digestive enzymes may work for heartburn. Sometimes probiotics (friendly bacteria in yoghurt) help various stomach issues. Sometimes soft plain rice with fresh ginger and an egg helps with the runs.
I hope you feel better very soon. Take care !!

[hutchibk]

I have recently dropped the xeloda (because after 18 months I started having some progression, so it wasn't working anymore) and this week we will add Herceptin infusions every three weeks in with my Tykerb. Will let you know how it goes.

[grandma2]

brenda, i'm assuming you were on tykerb because herceptin stopped working so why would they think it would work now? i'm only asking cause i think that is my onc's thinking. waiting for her call back re my bad diarhhea and i'm assuming she's going to tell me to stop even the 2000mg xeloda. i found herceptin to be the easiest drug i've taken and would love to be on that if only it worked.

[hutchibk]

One thing I learned early on, don't assume anything in cancer treatment!

We switched to Tykerb because I had brain mets and Herceptin doesn't cross the blood brain barrier. Tykerb/Xeloda was the newest combo tool in the toolbox, and we needed to cross the blood brain barrier, so we switched it up at the right time. We never believed that Herceptin stopped working, but we believed that my cancer was becoming resist to the Taxol I had been on for 14 months with the Herceptin. We always knew we would consider Herceptin again in a different setting. Now research is coming in from trials that is showing real success with the combined targeted agent approach, so here we go! Tykerb crosses the bbb, Herceptin can work in the torso, and if we see that we need an extra punch beyond that, we will consider adding a chemo back into the mix...

What ever it takes, I always say.

[Kathy T]

I was unable tolerate xeloda and seem to be stable for several months with Tykerb alone--I know it won't last forever but am happy it seems to be working now. good luck
Kathy T

[grandma2]

well i'm off the xeloda again, probably for good although i won't know till i see her on the 8th. thing is if i can't tolerate the 2000mg, then i'm not sure if there is any benefit to using less. i have no idea what she'll want to add to tykerb. feel so so weak today, probably from all the diarhhea yesterday. very depressed...i just want something to work that i have some quality of life with...right now i have none. gm oh kathy i just saw your post...do you have mets? were you on herceptin?

[hutchibk]

Hi Grandma - We learned last year at San Antonio Breast Cancer Symposium that a dose of 1500mg loses no efficacy, so perhaps talk to your doc about lowering the dose even more. Here's info on a trial that changed the dosing and regimen for Xeloda patients who had tolerance problems with the highest dose. It has worked very well for some of the folks here on the site. (1500mg, 2x day, 7 days on, 7 days off)

ABSTRACT: Phase I Study of a Novel Capecitabine Schedule Based on the Norton-Simon Mathematical Model in Patients With Metastatic Breast Cancer
[Journal of Clinical Oncology]
Purpose: This study was conducted to determine, in patients with advanced-stage breast cancer, the maximum tolerated dose (MTD) of capecitabine administered orally for 7 days followed by a 7-day rest (7/7), a schedule based on a mathematical method for the optimization of anticancer drug scheduling.
Patients and Methods: Eligible patients had measurable, metastatic breast cancer. There was no limit to number of prior treatments. A standard, three-patients-per-cohort dose-escalation scheme used flat-dose capecitabine beginning at 1,500 mg orally twice daily (bid) on a 7/7 schedule. Each cohort was monitored for 28 days before escalation to the next cohort to assess for delayed toxicity. Response was evaluated radiographically every 12 weeks; toxicity was assessed every 2 weeks.
Results: Twenty-one patients were treated on study. The most frequently reported treatment-related grade 2/3 adverse events were hand-foot syndrome (29%), leukopenia/neutropenia (24%), and fatigue (19%). Grade 3 toxicity was transient and easily managed. Three patients experienced grade 3 hand-foot syndrome; one of these patients had grade 3 diarrhea. There were no grade 4 events. The MTD of capecitabine 7/7 is 2,000 mg twice daily.

[hutchibk]

Also, ask your doc about this as well...

Three things in the Xeloda paperwork that many people don't know:

1. You should not be taking any Folic Acid supplements while taking Xeloda. Dietary folic acid is not an issue, but if it is in your multi-vitamin or your B-complex, it can ocntribute to greatly exaggerated side effects.

2. Don't drink or consume grapefruit products while on Xeloda for the same reasons.

3. A shortage of a critical enzyme for the metabolism of Xeloda called dihydropyrimidine dehydrogenase can cause someone who is taking it to experience the most severe side effects from it. I have read that some patients should actually not be taking Xeloda if they lack this enzyme.

Just wanted to share as this is something to keep in mind if you have had severe side effects while on it, and/or something to bring up to your doctor if it is being considered as a treatment for you.

[grandma2]

thanks brenda. this past week i was actually on 2000mg per day - 1000 in am and 1000 in pm. did you mean 1500 per day or 1500 bid? i did stop taking my script folic acid but was taking multi-vitamin and b-complex which included it. i'll ask her all these things. i do not consume grapefruit products and have even stopped oj. i will ask about the enzyme, but if i did happened to be lacking it i would think that would only explain why i can't tolerate the drug. i'm trying to find out what other drugs can be used with tykerb that have a good combined response. this may sound shallow but emotionally i think if i have to lose my hair again i will be beyond devasted. feel better today just still a little weak. i guess perhaps my electrolytes were off. i just need a little energy...my hub has no more clean jeans so a few things need to be done. i really appreciate your input. gm

[hutchibk]

I need to find the exact info about what is the lowest reduced dose that is has equal efficacy... let me get back to you. I'll ask our propellers heads the question.

[hutchibk]

I know others here have been on Avastin/Tykerb, and I have heard about others who are being treated with Gemzar/Tykerb as well as Abraxane/Tykerb, Navelbine/Tykerb, etc...

I am thrilled to be getting Tykerb/Herceptin and I have very high hopes for it!

[doh2pa]

Hi,

I've been taking Tykerb with Avastin and Gemzar since early July. My scans at the end of August showed liver mets had shrunk by 30% so we are continuing. I too had lots of GI problems on Tykerb and Xeloda. When I started back on Tykerb, Avastin and Gemzar I was still having some bloating and gas, so I am on a slightly reduced dose (4 pills daily instead of 5). It has reduced my GI symptoms (only occassional diahhrea) and is working well. So there are many options with Tykerb if your onc is willing to be creative.

[grandma2]

thank all of you for your comments and advice. am feeling better since i stopped xeloda again...just still tired. i was so weak for days that i think all the diarhhea for days messed up my electrolytes. still very fatigued. this afternoon i actually went to lie down and went out cold for 2 1/2 hours. i can never sleep in the day even after surgery so i guess my body needed it badly. ha ha hope i can sleep tonight. i see the onc next wed and am curious to see what she want's to add to the tykerb. i do feel encouraged to know there are other drugs for me and that i'm not the only one who couldn't tolerate xeloda. i was starting to feel like i had failed in some way, ie not tough enough. again, your support has been so helpful for me. gm