All about Xeloda
Comments
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Nicole, check with your pharmacist about probiotics if you have a chest port. I was taking them and heard a news report about probiotics causing the infections.
She checked the information and agreed. So I am not taking them anymore on a regular basis.
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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.
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Lynn, I agree! I had such good results on my scan in December that I don't want to mess with success. Call me crazy, but I would rather have some redness and peeling vs liver progression, too!
My MO says that once my hands and feet resolve, he's going to start me back on the same dose which is 3000 mg per day, and three pills in the morning and three in the evening, BUT he''s going to switch me to a 7 Days on 7 days off schedule to reduce the cumulative toxicity. I'm fine with that!
I'm also heartened because when I first started going to him in November and we were discussing possible side effects, I mentioned that some women in this group had different schedules as well as different dosages. He seemed surprised by the different schedules and turned around to look at his nurse who nodded to him. He obviously took the time to look into this, now that he is proposing a new dosage schedule!
Nicole, I haven't been diagnosed with shingles yet. I won't know for sure until after I see my dermatologist on Tuesday, then I will update everyone.
Happy February Everyone!
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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.
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has anyone had slight swelling, burning of the lips?
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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
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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).
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Nicole, I did use plastic bags at first. My first pairs of the silicone socks came within 2 weeks, but I suspect that since the USPS ha cracked down on the free shipping from China, that is the reason why delivery has slowed down.
For the itching, maybe you should use the ice-pack socks from Amazon? Ice always helps me. Just be very careful if you try to walk in them.
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Thanks M3llon
Good to know it goes away.
I'm in the 2nd week of the first cycle0 -
Nicole - Liz and I know a few people with ports (Liz doesn't have one) and I don't think they are as bad as you may think. My first thought about a port was that it would be awful but others I have talked to say they like the port. Bloodwork and IV treatments are easy and painless.
Grant.
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I love my port! After 18 years of poking, it is still holding up!
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I think getting the port was one of the best decision in this cancer journey. And most of the time i forget that its even there. But they do sometimes like to take the blood from veins. Most of the time they access using ports.
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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.
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Thanks Mel,
I have learned to adjust my diet through the years to avoid spicy or fried foods or too much tomato sauce.
I like Emetrol OTC syrup for nausea. When my stomach is upset, I feel better eating white carbs.
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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.
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This is so depressing!
my mouth sores are awful!! I’m using the “magic mouthwash” but the lips are swollen from the sores inside it and the roof of my mouth is raw.
Seems like the rattling cough I developed on Afinitor is worse now. Does Xeloda cause inflammation as well0 -
Nystatin is used if you have thrush. Call your onc for an immediate appointment.
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Naesha thank you for your tips. Leee I always get bad mouth sores. Mix baking soda and swish it around. Probiotics also helped but I dont know if we can take them on chemo. That Nyastin that Denny said is extremely important if its thrush. I was always told that its a chemical imbalance like to acidic or too alkalinic. Anyway that has always been some of my wirse side effects. Its miserable and I pray you start feeling better. Oh I just thought when I was in the red devil and taxotere I would suck in ice or popsicle during infusions. Maybe that would help to do that periodically
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The mouthwash has Diph/lidocaine/Nyastin so that's good!
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Hi, Denny123, great advice. I do the food service gloves too. Do you have particular silicone socks you recommend? Everything I've found has fragrance in it, which doesn't play nice with my skin even on a good day.
Thanks!
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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.
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mzg- I get these on eBay, but they take 6 weeks to get here. No odor and cheap!
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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?
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Nicole, have you tried sleeping in "doctor" gloves with a coating of Aquaphor on your palms? That was suggested by my dermatologist, and it has helped me. I know that you just said that Aquaphor didn't work for you, but I wonder if you have tried using it in this fashion.
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Yes...with surgical gloves the palms are not my problem the finger tips are.... but yes I slept in the gloves with aquafor
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Does Aquafor help with the burning/pain or just the dryness and peeling? The pain in my hands and feet is almost unmanageable.
My GP prescribed a steroid cream and a compound ointment for pain relief, but neither help.
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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.
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thanks for the info JoynerL. I see my onc next week. I’m going to ask her about 7/7 instead of 14/7.
I’ll also try aquafor and gloves and the socks. As I recall from my stint withIV chemo, Aquafor has some sort of magic that I’ve never been able to decode. 🙂
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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).
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