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Old 08-19-2007, 08:31 AM   #3
doh2pa
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Join Date: Oct 2005
Location: Chadds Ford, Pa
Posts: 206
Hi Sally,

I'm so sorry to hear about your progression. But lots of women on this board have had GREAT results with Tykerb and Xeloda. So there is reason to be hopeful.

My experiences with this combo are similar to Brendas. I have been on Tykerb/Xeloda for liver and lung mets since May. My scans were scary, lots of liver mets and 3 lung mets, lymph nodes lighting up too. However, after only 6 weeks on this regimen my lung mets were gone and lots of my liver mets were gone too. My two large liver mets were half the size. My liver enzyme returned to normal within 3 weeks. Very encouraging stuff!

Now for side effects. There are a lot of women on this regimen on the board and side effects do vary. I've been very lucky - this has been the easiest regimen I have ever been on (and I've been on 3!). No nausea, no headaches (except for a few days in the beginning, which I associated with stress!). I take Tykerb 5 pills a day every day and Xeloda 6 pills a day (3 in the a.m. and 3 in the p.m) for two weeks on and the one week off. I think this regimen is pretty standard. I feel a little tired on my Xeloda weeks but do continue to work 3 days a week, take care of my family, exercise, etc. I just go to bed a little earlier on those weeks. On the week off, I do recover that lost energy, but I also get a few days of diarrhea (just one or two episodes per day) on the xeloda off week, strange stuff. Some folks get hand/foot syndrome that varies in intensity but can usually be controlled with dosage adjustments. I am very careful with my hands and feet, wearing gloves to garden and wash dishes, staying away from my "cruel shoes", lots of hand and foot creme. My onc encouraged me to get pedicures too (oh, okay, if you insist....ha..ha). But overall it's been very tolerable and I hope to stay on this a long time. My onc has two stage 4 women who were in the trial and have been on this regimen for 2 years!

More encouraging is the fact that research is finally developing regimens that "target" cancer cells rather than the "napalm" approach that has been used in the past. If we can stay with this regimen for a year or two, by then there will be more amazing new therapies to help us put together months, years and hang in there for the cure!

Most important to remember on this regimen is that side effects are dose dependent. If you begin to have side effects, let your onc know immediately, don't wait. Stay in tune with your body and work together with your medical team to get the best result from this promising combo.

Good luck to you Sally, and please let us know how you are doing.
__________________
Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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