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betlen5
03-03-2007, 11:22 PM
Hi All,

Just wanted to give you an update of my treatment decisions. I have gone throught the brain MRI, ECHO & PET/CT scans and I qualify for the clenical trial drug Tykerb 1250 mg/daily and will also be taking Xeloda 2000mg/m2/days 1-14 every 21 days. These are both in a PILL form, which I thing is WONDERFUL after everything I have been through. Docs have decided not to put me back on Herceptine again due to the reaccurance while on Herceptin for 12 months. I sure hope this works for me this time.

All the nodes (That I have left) under my right arm, collar bone area and between my breasts are HER2+++ positive. The er/pr are now neg where the last 4 times with cancer they have been pos. This maybe due to finally being post menaposal??? I don't know.

If anyone is currently on this treatment please give me some feedback on results and side affects.

Thoughts and prayers are always welcome...

Thanks, Betty

heblaj01
03-03-2007, 11:59 PM
Betty.
You might be interested in an article posted today by Hopeful in which preclinical & early clinical trial indicate that Xeloda 7 days ON/ 7 days OFF may be more effective & less toxic than the standard 2 weeks ON /1 week off you are taking:
See tracks 14 & 15 at http://www.breastcancerupdate.com/bcu2007/1/norton.asp

This experimental new schedule is not yet approved & I am not sure if any onc would prescribe it off label, (that is outside of the clinical trial).

betlen5
03-04-2007, 02:49 PM
Thanks heblaj01

vickie h
03-04-2007, 08:47 PM
Betty, I may be going on the same treatment you are soon. I send you my best wishes and love and prayers. Let us know how you do. Love, Vickie

betlen5
03-04-2007, 08:53 PM
Thanks Vickie. I will keep everyone updated on my progress.

Prayers are always welcome....Thanks, Betty

TheresaM
03-06-2007, 09:06 PM
Betty: tykerb/xeloda was the only drug combo that ever slowed my cancer growth (it was my fourth cytotoxic regime, herceptin was a total bust for me). It work like a miracle on my skin mets, lung mets and extensive lymph nodes. Unfortunately it only worked for about 6 or 7 weeks, then the xeloda caused necrotic bowel. It is not a common side effect but it can happen and it nearly killed me. Anyway, after a month off the treatment recovering from the necrotic bowel, I went back on the tykerb/xeloda but it never worked again.

The positive news out of my little story is that the tykerb/xeloda produced a response in my cancer where nothing else ever had. You have every reason to hope it will work for you.

Good luck!
Theresa

Shell
03-07-2007, 09:21 AM
Betty-

I was on just xeloda, and then tykerb/xeloda, for about 15 months, and had initial great results.

Go to www.xeloda.com (http://www.xeloda.com) and they have a treatment plan and diary with great suggestions. Be on top of your symptoms, because the H/F can be painful, and your onc will be able to reduce dosages, as was done for me several times...

Pill form was a great bonus; I just went in every 6 weeks, and then 12, for my CT scan and echo and blood work.

Good luck with it,

betlen5
03-07-2007, 10:50 AM
Theresa, thanks for the positive feedback. Whst are you on now?

heblaj01
03-07-2007, 06:45 PM
Betty,
It appears that contrary to my assumption that it would be difficult to find an onc willing to prescribe the off label schedule of one week ON/one week OFF Xeloda, there are some that do. As examples here are two patient stories:
http://www.hopkinsbreastcenter.org/services/ask_expert/index.asp?cat=19&pagenum=50 See Question: #1497 Date: 10/11/2006
Note:
This is a special case of low dose Xeloda made necessary by excessive diarrhea. May be the onc thought that the expected rise in efficiency of the the schedule would compensate for the low dose. That unfortunately did not prevent progression in this case.
http://www.cancercompass.com/message-board/message/all,3908,0.htm Date: 10/11/2006
Hi..just started taking xeloda. Please tell me more about how it worked for you..you said you had few side effects, even after 4 months. Did it work to keep cancer at bay? I am a stage 4 metastatic breast cancer survivor. Cancer has spread to bones only. I was also on femara and many other hormonal treatments, which all failed after a while. Now started xeloda, 3000 mg per day, one week on and one week off. I just finished one month, now into second month. I really have had very few side effects. Some cramping in my hands and feet. My vision seems to get alittle blurred..and maybe alittle more tired. Is this all normal while taking xeloda?
Any advice would be appreciated...God bless, Kathy





Question:
#1497