All about Xeloda

Katty and all, it's such a balancing act for us: at what point is the HNF bad enough to justify a dose/scheduling reduction. My onc, whom I like and trust, is always ready to reduce, but I'm not. We started at 3000/da (1500 AM and 1500 PM), always at 7 on/7 off. This was my Sloan Kettering doc's suggested plan. Then as SE worsened, 1000/1500 (2500/da), and now we're at 1000/1000 (total 2000/da). My hands are currently what she describes as Grade II HNF, and she's ready to reduce. I'm not, since my cancer is, for now, stable. I'd rather have somewhat painful hands than have progression and face a new treatment. That said, I know that someone on this string (Denny?) is on 500/500 and doing well. Maybe I would, too, but I'm afraid to try it.

I just started with a new concierge PC doc, and he noted my hands and said, "I should technically have you reduce your Xeloda". I really like him, but I almost said, "I don't care what you say, I'm not reducing. Don't try it, buddy....". I simply smiled pleasantly.

It's so very helpful reading about everyone's own experience, so that we can see our own in context, and make valid judgments going forward.

Hugs to all.

Joyner-I am on 2,000 a day. When my hands get sore, I use a thin coating of Aquaphor even through the day as long as I am just typing on my computer.

My feet are what is sore, though....I have had an infected big right toe (slowly getting better with daily Betadine) and a crack in my left big toe-pit. My onc is going to send a script to my MedCare place for an orthopedic boot for when I need to go out since I can't wear shoes without pain. That was my idea. If it was summer, I could wear sandals, but my feet are a mess.

Good luck Katty! I recently got my Shingrex booster.

Denny thanks for the heads up...I do not have a port and never have yet (thank God for that)...but I appreciate the info

Ok ITCHY FEET OMGOSH I was up most of the night itching!!! It's so strange.

Denny, I ordered the silicone feet things from Ebay and I got another kind also, from amazon but the toes are exposed I am going to try them today (since the ones on eBay take over a month to receive).

Thanks M3llon

Good to know it goes away.
I'm in the 2nd week of the first cycle

I love my port! After 18 years of poking, it is still holding up!

Wow Denny, you have had a port for 18 years? That is amazing. Ladies, i am also on my 2nd week of 2nd cycle and I am gaving alit of fatigue, constipation and nause and vomiting. Im keeping my feet lotioned up. Im getting my Nephrostomy tube exchanged next week.

Is anyone else having stomach issues? What has helped with that. Have you changed your diet? What foods can you tolerate?

Hoping we all have an easier time soon. Praying for us all. Hugs.

melmcbee I just completed 3rd cycle of X. I am taking 3000 mg per day. Earlier i used to take 3 each in morning and 3 in the evening following 14 days on and one week off. My blood count was very low so my ONC suggested to go on 7/7 schedule. I noticed that i do not get any side effects in the evening but I feel fatigue, nausea in the morning only. So I told to my ONC if i can do 2 in the morning and 4 in evening and see if it will help me on the side effects. Luckily i think it worked for me. In my 3rd cycle i did not feel any fatigue or nausea in the morning after taking 2 pills. I asked to my ONC what if i take all the meds in the evening only(trying to be smart lol) then she said that doing so , there will be less effect of meds. So for now i am doing 2 in the morning and 4 in the evening and its been helping so far.

So check with your ONC once if you can also do the same. This schedule of mine has helped me to avoid the meds for nausea. So far I haven't face any constipation yet . My ONC denied to lower the dose as she said based on my weight and height 3000 mg is also low for me.

Bowling has been regular to me. Food wise I haven't followed any strict diet rules except avoiding sugar, and following low carbs.

Good luck.

Nystatin is used if you have thrush. Call your onc for an immediate appointment.

The mouthwash has Diph/lidocaine/Nyastin so that's good!

I’m new to the Xeloda club. I started my first cycle last Thursday (14 / 7 each cycle with 3 pills @ 500 mg each twice a day). In September 2019 I was given 3 choices of treatment: Xeloda, Doxil and clinical trial H3B 6545. I’ve been following this thread for a little while.

Anyone have any tips or advice for walking & light exercise while taking Xeloda? I’m worried about the hand foot syndrome. I began Doxil in September and still religiously slather on Udder Cream each night to my hands and feet. I’m a little nervous about any additional friction or heat to my hands and feet. I had toxic erythema of chemotherapy while on Doxil with a horrible rash not on my hands or feet, but from my armpits to my upper legs.

Aquafor and utterly smooth have been epic fails for me...not doing a darn thing...any other suggestions.??? I am about to try "working hands" or Avveno eczema balm?

Yes...with surgical gloves the palms are not my problem the finger tips are.... but yes I slept in the gloves with aquafor

M3llon, I hadn't thought of it in those terms. I look forward at night to slathering the Aquaphor on my hands and sliding them into my nitrile doctor gloves. My hands primarily burn and are stiff and sore during the day, and the gloves/Aquaphor combination, at least for me, makes them comfortable at night until the next morning.

My feet don't hurt much anymore, since I lowered my dosage to 2/AM and 2/PM (4 500s per day, 7 on/7 off). I wear these "socks" from Amazon at night, without cream, and they feel good on my feet.

M3llon, sometimes, but infrequently, during the day, if my hands are particulary bothering me, I'll do the same with Aquaphor and gloves. The exam gloves are so thin that I can function pretty normally (though I look a bit odd).