Seeking advice about Xeloda dosing and side effect management.

[MacroMom]

After two months on Faslodex/Ibrance my CA 15-3 is skyrocketing and liver mets are increasing. I will probably be starting oral Xeloda very soon. I would really appreciate hearing from those of you who have used it. I weigh about 128 lbs (58 kilos) and have heard that the dose is based upon body size. Was that your experience? What dose did you start at? Did you need to decrease?

I have heard of using Udderly Smooth or Bag Balm to minimize the hand/foot syndrome, also oral Vitamin B6 and curcumin. Any other suggestions for dealing with side effects?

And of course I'd love to hear some Xeloda success stories!

Many thanks,

Patty

[barbarac76]

Hi Patty,

I've been on Xeloda since February after cancer spread to my liver. First PTscan in May after starting Xeloda showed resolution of nodules in liver. Other nodules in lungs are stable. My dose is 1500mg in am and another 1500mg in pm. I weigh more than you do. Seven days on, seven days off. Since I haven't experienced any serious side effects (it's been relatively easy), I asked my oncologist to consider increasing the dose. She said an increased dose would not improve the efficacy. I have heard of other women taking Xeloda more frequently.

I use the Udderly Smooth cream (extra care 20, which contains urea, the ingredient that is supposed to help with the hand/foot syndrome). I haven't experienced the intensity of hand/foot syndrome. My feet get slightly redder towards the end of my on week.

I wish you well with Xeloda. I've heard good things about the drug from other women on this website and others.

Barbara

[MacroMom in reply to barbarac76]

Thanks Barb, this is very helpful and encouraging! I recently got a second opinion at Dana Farber and the oncologist also recommended Xeloda as the most effective against liver mets. Hope I can start it soon!

[barbarac76 in reply to MacroMom]

Patty, Your second opinion from Dana Farber about Xeloda as a good choice for liver mets is reassuring. I usually get a second opinion when I change treatments, but did not this time. I am being treated at Memorial Sloan Kettering (formally in NYC, now in their new center in NJ). Do you often get a second opinion at Dana Farber? It's something I may consider moving forward.

Barbara

[MacroMom in reply to barbarac76]

This was the first time I've gotten a second opinion and I would definitely do it again before a treatment change. I went to DF because it has such a good reputation, also because I was visiting family nearby. It was perfect timing for me and I'm definitely glad I went. The intake staff were great and they made the process very easy. The onc I saw didn't have the greatest people skills but she knew her Rx and answered all my questions. If you search "Dana Farber" here you can find other reviews and oncologist recommendations. Since I live in Oregon they also recommended I go to Seattle for a second opinion, so I'll be closer in case there is a trial I can participate in.

Hope that helps! I'm seeing my oncologist today - I'll let you know if I start Xeloda and the dosing. Fingers crossed!

[jstickrod]

I was on Ibrance/Faslodex for 18 months, and was just switched in April to Xeloda due to frequent infections in my body. I was very nervous about switching meds, but honestly, it has been pretty easy transition. I just finished my 2nd round of Xeloda. I weigh 144, and am on 1500 mg dose in the morning, and 1500 mg dose in the evening for two week stretch, then two weeks off. I have had no problem with hand/foot syndrome, just a little redness at the end of the cycle. I use Gold Bond Ultimate lotion, which contains urea. My first month of meds, I did have extreme exhaustion, and a little nausea. This month I am not nearly as tired, and no nausea.

I wish you uncomplicated transition to Xeloda, and good results. That's what we all pray for! I probably won't have a scan for another 4-5 months, so I am also hoping for good reports. I feel good, and try to keep that positive attitude! Wishing you the same!

[MacroMom in reply to jstickrod]

Thanks so much, this is very helpful! I'll be seeing my onc today and hopefully start right on it. I also saw a Naturopathic oncologist the other day and he had some good suggestions for supplements that he said actually help the Xeloda work better and minimize side effects. I want to review those with my onc today; if she agrees I'll post about them in case others are interested.

So glad you feel good, and yes, I'll try to stay positive!

[Kimr2081 in reply to MacroMom]

Please post them if your onc is okay with them.

[Kimr2081]

Hi Patty,

I have been on Xeloda since last September and it is keeping things stable and I am hoping it will shrink them. The only real side effect I have had is the hand and feet issues but they didn't start for several months. Once they did they got a little bad and my oncologist lowered my evening dose to 1000 from 1500. I also take 1500 in the am. I do two weeks on and one off. I still have issues with my hands and feet but nothing for the most part I can't handle. For me aquaphor has worked the best. I lather it on at night on my feet and then sleep in socks which I hate but have gotten used to. Fortunately for me I live in So Cal so whenever I don't have to have enclosed shoes on and the weather is good I just wear flip flops. My hands aren't bad. They do feel kind of funny though. They feel very slick and like the skin on my palms has shrunk. Weird but its manageable. I am always stretching my fingers out. I also have liver mets. I hope it works for you and that the hand and feet symptoms stay at bay. Good luck,

Kim

[MacroMom in reply to Kimr2081]

Thanks Kim, that's very helpful. I'll try the aquafor. If Xeloda has been keeping thing stable since September I think that's success! I'm going to reply above to my own post with suggestions from my oncologist and naturopathic oncologist so the others who replied here can see them. Here in Oregon there are only a few months when I hang out in flip flops!

[MacroMom]

Thanks to everyone who replied with their Xeloda experiences and hints! I saw my oncologist today. As soon as the pharmacy can deliver it I'll be starting Xeloda at 1300 mg twice a day, 7 days on and 7 days off. Other recommendations from my ND onc: 300mg of Vitamin B6 to help with the hand/foot syndrome; curcumin extract to help decrease inflammation, and increasesthe effectiveness of Xeloda; and 1,000 mg Glycine to help support liver cell regeneration and function. I'll be happy to get started on this next adventure!

[Kimr2081]

Thanks for the info. I take curcumin but not the others. Will have to add them to my daily routine.