liver mets are back, Tykerb/Xeloda next

sally · 08-17-2007, 04:04 PM

I was dx in march 2004 with stage IV Her2+++, er+, pr+ 8/16 nodes positive and a spot on my liver. I had Taxatere, Carboplatin and Herceptin along with Femara. I have been on Herceptin every three weeks since. I was NED for the three years after my initial chemo. I just got my results from my latest PET/CT and I have 2 small spots on my liver and 2 small spots on my lymphnodes outside my liver. My Doctor just informed me that I will discontinue Herceptin and Tamoxifen (I swiched to Tamox about 8 months ago due to rising tumor markers) and start Tykerb/Xeloda. I have been reading all the posts to get an idea of what to expect. How soon do the side effects start? I don't know my dosing yet. I will go in next week and get started. I would really appreciate any advise or tips that helped with your side effects. Thanks, Sally

hutchibk · 08-17-2007, 04:43 PM

HI Sally - I am fortunate that I have had no bad side effects, actually hardly any at all. I have been on T/X for three months now. I had apx. two weeks of a slight rash (just dry skin really) on my cheeks, which appeared about 7 days after starting Tykerb. I only experience diarrhea during the first 24-36 hours of my Xeloda OFF week (after my two ON weeks of Xeloda) - and in my case it is easily tolerated and treated. I have had no nausea or queasiness at all. No headaches. I hope you also do well on T/X. I have found it to be quite a magic potion for me at this time. It is shrinking my brain mets! Best of luck and God's speed.

(I take Xeloda 3 pills AM, 4 pills PM for 2 weeks on and 1 week off.... and Tykerb 5 pills per day every day.)

doh2pa · 08-19-2007, 08:31 AM

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.

SoCalGal · 08-20-2007, 10:46 PM

Hi Sally,
After 3 mos on tykerb-xeloda, now on carbo-gem-tykerb, I can say that you will find ty-xeloda a cake walk after what you've been on...the side effects of t/x really calm down after the first few weeks.

Important to communicate w/your onc if you are having severe symptoms of diarrhea. The nice thing about this regime is you can adjust the dosing to make it tolerable AND it will still be effective.

There are a lot of people getting great results on t/xeloda! Best of luck.
Flori