Xeloda recommendations please

[SoConfused]

Good morning, everyone.

I'm to start taking Xeloda and Avastin as a maintenance regiment to manage my mCRC. I'm currently in remission as my only metastatic lesion, a single small liver tumor, is not longer visible on any imaging modalities.

My question is for those of you who have taken XELODA ... what are your recommendations for pre-emptively and proactively managing side effects of this medication? I am most particularly interested in learning how to best avoid the hand/foot syndrome.

Your feedback is appreciated.

[Guinevere]

Moisturize, moisturize, moisturize!! I use the udder cream and then put socks and gloves on to help the lotion/cream really soak in. My hands have gotten much better and my feet are beginning not to hurt so much. I put the cream on at least three times a day but anytime I'm just sitting and watching TV, I use it. Also, watch your water temps. Really hot water will dry out your skin and that's the biggest problem with hand/foot - to keep the skin from getting too dry and cracking. You need to keep you nails short. They will split and break and bur if you don't. I'm sure others here have even more good tips. Hope this helps!

[BrownBagger]

What Guinevere said.

I like to goop up my hands and then put on a pair of gloves this time of year before driving to work. That hour of soak-time really helps. Likewise, I goop up my feet with udder balm, then walk around all day with nice, slimy feet. Actually, it feels pretty good. I was on the road a week or two ago and forgot to bring along any cream. Used the hotel hand conditioner all the way home, and that worked pretty well, too.

[weisssoccermom]

Another very important piece of info regarding the hand/foot. Use GLYCERIN soap - it is sooooo much better than regular soaps - even the ones that claim that they are 'gentle' or 'moisturizing'. Soap, particularly if you are an avid hand washer, dries out the skin - allowing for the hand/foot syndrome to gain the 'upper hand' (no pun intended lol!). I also moisturized, but again, just like during radiation, read labels and be careful about products that contain a lot of alcohol (alcohol will dry the skin as well). I particularly like Surgeon's Secret on my hands and feet. Ditto the suggestion to use frequently and NOT sparingly!

Remember as well - when on Xeloda, don't take a multivitamin that contains folic acid (good luck finding one that doesn't - we've tried) and just watch your food products that contain folic acid (i.e. grain products). You certainly don't have to avoid them - just read labels and see how much food (particularly cereal) is fortified with folic acid. I would also highly suggest taking at least one (I always took two during chemorad and during my Xeloda only chemo) probiotic to help replace the intestinal bacteria (the good stuff) that the chemo is killing off.

Good luck.
Jaynee

[Guinevere]

Yeah, my onc took me off any vitamins, even vitamin C. Now, my allergies are driving me nuts but I guess that's better than the vitamins nulling the chemo.

[Ivona]

Nausea should NOT be a huge problem....but I was prescribed stemitil on an as needed basis just in case. I think I took it less than half a dozen times during my 5 months or so while on Xeloda.

I was lucky in that I never developed the raw peeling hands or feet. However, my hands and feet did hurt....I found the skin got quite thin and I found abrasive fabrics very painful! For example, the steering wheel cover on our car felt like razor blades on my bare hands. And towards the end of tx, it became painful to walk long distances...my feet just hurt!

So.....watch out for your skin....moisturize like you've never moisturized before! Wear soft gloves and socks if that helps.

Good luck!

[weisssoccermom]

In the case of vitamins that contain folic acid - it's NOT that the vitamins will nullify the effects of the chemo. It's simply that folic acid will allow the Xeloda to remain in the system longer causing more severe side effects. Leucovorin, the drug given with infused 5FU, is a derivitive of folic acid - it (leucovorin) is used to help the infused 5FU remain in your system longer. If you take or ingest large quantities of folic acid when you're taking Xeloda, the folic acid will help the Xeloda remain in the body longer. Then you take another dose and before you realize it, you have too much Xeloda in your system. This is when the biggest issues of nausea and gastric problems rear its ugly head.

[Guinevere]

In the case of vitamins that contain folic acid - it's NOT that the vitamins will nullify the effects of the chemo. It's simply that folic acid will allow the Xeloda to remain in the system longer causing more severe side effects. Leucovorin, the drug given with infused 5FU, is a derivitive of folic acid - it (leucovorin) is used to help the infused 5FU remain in your system longer. If you take or ingest large quantities of folic acid when you're taking Xeloda, the folic acid will help the Xeloda remain in the body longer. Then you take another dose and before you realize it, you have too much Xeloda in your system. This is when the biggest issues of nausea and gastric problems rear its ugly head.

Thanks for clearing that up, Jaynee! I thought it was the anti-oxidants that fought agains the chemo. Learn sumpin' new ever'day!

[betsydoglover]

Everyone has given good advice.

For symptomatic relief - your feet and hands can get pretty hot - I suggest ice packs, pack of peas whatever. It helps you feel better. I wore Crocs the last time I was on Xeloda with gel inserts - kept friction to the feet at a minimum. Also know that you can do absolutely everything, but on a full dose of Xeloda you may still have hand foot issues. My major issues last time resolved once I stopped Xeloda (9/12/09). However, my hands are still dry and peel - seems like this will be a lifelong condition for me!

Good luck,

[jdepp]

Good morning, everyone.

I'm to start taking Xeloda and Avastin as a maintenance regiment to manage my mCRC. I'm currently in remission as my only metastatic lesion, a single small liver tumor, is not longer visible on any imaging modalities.

My question is for those of you who have taken XELODA ... what are your recommendations for pre-emptively and proactively managing side effects of this medication? I am most particularly interested in learning how to best avoid the hand/foot syndrome.

Your feedback is appreciated.

We're in the same chemo boat (welcome aboard ) -- I've been doing Avastin with xeloda for quite a while now. I would like to speak up for Aquaphor - lots on the hands, especially after showering and in the a.m. (when, for me at least, the hand-foot is worst). I pretty much wear gloves all the time but have not stopped my daily activities (though I'm down to a measly 25 miles of running a week. Alas I digress.)

Good luck to you - don't be shy about discussing the dosages with your onc. There are many viable maintenance regimens out there.

[Suze]

Jaynee is the only person on this board (that i know of) who brings up the importance ot avoiding folic acid. (I think of her as "wise soccer mom".) Americans strip wheat of its value and "enrich" it with chemicals. You are better off getting folic acid from brussels sprouts. The folic acid is to prevent spina bifida, a noble goal, but no good for us on Xeloda. I was getting major gut aches until my DH found a reference to folic acid. I use pasta from Italy, and local whole grain artisan bread, More expensive, but worth it for me.
Lesson number two, never take Xeloda on an empty stomach. I endured about 8 hours of the gut ache from hell when I learned that lesson.
Oddly enough, I never had any trouble with hand/foot syndrome. Susan

[horizon]

A tip I got from here was to put 'Udderly Smooth' lotion on my feet several times a day and wear socks at night after doing that to keep in the moisture.

[weisssoccermom]

Thought I'd point something out. Yes, some oncs do believe that antioxidants can interfer with chemo (and others are on the fence on this subject). It is my understanding, though, that the generic 'multivitamin' doesn't have the quanities of antioxidants that some oncs are concerned about. Still, the issue of folic acid and 5FU/Xeloda is a real concern and one that needs to be avoided.

As Suze points out, folic acid has been added to our grain products as a way of preventing spina bifida in pregnant women. When the whole folic acid debate came about, not only was the grain supply targeted but so were many others sources, one of them being the multivitamin. I've looked at all the multivitamins I could find - in the Walmart/Walgreen type of stores as well as those in the Super Supplement/GNC type of stores. ALL of them, with the exception of ONE particular type of Flinstone Gummies have been fortified with folic acid - some way more so than others. Sometime take a look at just how much supplementation is out there in the multivitamin source - generally at least 100% of the recommended daily value - most products many times more than that amount. Many people also don't realize that folic acid is also referred to as B9 so taking a B complex pill also is not the most prudent course of action when on Xeloda.

Studies have shown that patients in Europe seem to tolerate Xeloda better than patients in the US/Canada with respect to gastro issues - with the consensus being the fortification of our grain products (not so in Europe) being the culprit. One other thing to mention about Xeloda and how to take the drug. Not only is it NOT recommended to take it on an empty stomach, but it is also NOT recommended to take it with food. For whatever reason, taking the pill within 30 minutes AFTER finishing a meal tends to alleviate the gastro issues which can be associated with it. I used to set my timer after breakfast and dinner - depending on what program I wanted to watch, what I had to do, etc., I would set the timer for anywhere from 15 - 30 minutes and then make sure I took the pills. When I utilized this approach - no gastro issues. Little tricks which seem to work well for most patients but are overlooked by the medical professionals.

Jaynee

[horizon]

Studies have shown that patients in Europe seem to tolerate Xeloda better than patients in the US/Canada with respect to gastro issues - with the consensus being the fortification of our grain products (not so in Europe) being the culprit. One other thing to mention about Xeloda and how to take the drug. Not only is it NOT recommended to take it on an empty stomach, but it is also NOT recommended to take it with food. For whatever reason, taking the pill within 30 minutes AFTER finishing a meal tends to alleviate the gastro issues which can be associated with it. I used to set my timer after breakfast and dinner - depending on what program I wanted to watch, what I had to do, etc., I would set the timer for anywhere from 15 - 30 minutes and then make sure I took the pills. When I utilized this approach - no gastro issues. Little tricks which seem to work well for most patients but are overlooked by the medical professionals.

That's what I did too. It sucked sometimes because I was still full from dinner and didn't want to down another glass of water on top of that, but I never had any gastro issues so I stuck with doing that.

[SoConfused]

Thanks to ALL of you for your tips and recommendations. I'll keep your suggestions in mind as I start this regimen next week.

jdepp - you mentioned you've been on this regimen for a while ... how is your quality of life? has it been successful in keeping you NED?