Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 In a message dated 1/6/2004 6:40:46 PM Eastern Standard Time, altman23@... writes: But in addition to that, another thing has been REALLY bothering me over the past few weeks. And that is the NASTY hand/foot/mouthsore syndrome from Xeloda therapy. This is the main topic I discussed with the oncologist yesterday. ....someone else mentioned whether you might be taking B vitamins? I really haven't had much trouble with hand/foot syndrome myself (scaly looking heels and dry cuticles is about it) but my onc. put me on B6 vitamins at 100 mg. per day. As of today, I'm going to be taking Celebrex 200 mg. per day which the onc. says has shown to be effective against hand/foot as well as having possible anti-tumor properties. >>>> I could live with that if I didn't have these damn mouthsores!!! They have gotten so bad, I can barely eat a piece of toast in the morning when I get up! Needless to say, I am getting pretty tired of it (and I am becoming increasingly worried not eating will rapidly start to affect my overall health). So I need to do something about this right away(!)<<<< YUCK! I know that has to be rough, especially since unlike me, you don't need to lose any weight....here are some things I've read on another list that you can try if you haven't already: Mouth Rinse: 1 quart water 1 tablespoon salt 1/4 cup baking soda 1/4 cup karo syrup (can increase to 1/2 cup to improve taste) Swish and swallow as often as needed Here's another one: 1 quart water 2 Tablespoon Salt 2 Tablespoon Peroxide 2 Tablespoon Chloraseptic or Cepastat Mouthwash There's also an over-the-counter mouthwash and toothpaste called Biotene that's supposed to be helpful. I also heard about a prescription combo made with Lidocaine, Benedryl and Maalox. I have no idea what the proportions would be but I'm sure your pharmacist would know, if not your doc. Also, back in my old nursing home days, Mycostatin swish and swallow was used a ton - it's also prescription. HTH, Terry in GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Hi All, Well, today was the second of my radiation tx for spinal mets - I'm supposed to get a total of 10. Haven't noticed anything yet " efficacywise " (i.e. can't tell if it is " working " or not), as my legs are still quite weak. I sure HOPE it is gonna help, cause I am getting VERY, VERY, VERY tired of barely being able to walk!!!! But in addition to that, another thing has been REALLY bothering me over the past few weeks. And that is the NASTY hand/foot/mouthsore syndrome from Xeloda therapy. This is the main topic I discussed with the oncologist yesterday. Well, actually...although the hand/foot thing LOOKS " bad " , I could live with that if I didn't have these damn mouthsores!!! They have gotten so bad, I can barely eat a piece of toast in the morning when I get up! Needless to say, I am getting pretty tired of it (and I am becoming increasingly worried not eating will rapidly start to affect my overall health). So I need to do something about this right away (!) The oncologist says that I need a bit longer " break " from Xeloda than originally planned...like maybe 3 weeks (followed by a dose reduction in Xeloda). Origionally, the radiation onc had suggested going off Xeloda only while the radiation was being administered (2 weeks). But given the way I feel (and my reduction in appetite combined with increasing soreness of the mouth), I am not inclined to complain too much about this! So - is this not a clearcut question of " how aggressive to treat " ? The decision does not seem so hard. If mets start hurting again (indicating they are growing) during the 3 week period, then I would reconsider starting Xeloda therapy earlier than the onc is currently suggesting (my hope/suspicion is this will not happen). Anyway - I think this idea is " in line " with what others here such as Terry have suggested. If it doesn't " feel right " , then don't do it! Decisions can ALWAYS be revisited - and that is what should be done " on the fly " when things change or do not seem to be going as planned. Just my thoughts! Best Wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 : I was sorry to hear about your side effects from Xeloda. I just wanted to pass along some info about them. When my husband was on Xeloda, we started treatment for the problems as soon as he started taking it and before any side effects started. I think that once the side effects occur, it is much more difficult to get them under control. For the hands and feet, I got bag balm. It is sold at most drug stores. It is VERY greasy to the touch, but I massaged his hands and feet with it daily. After I put it on his feet, he put socks on to keep the vaseline like gel on his feet. It eliminated the chapping from occurring. Regarding the mouth sores, he faithfully used a prescription mixture from the time he started on Xeloda. At one point he started to get a small sore, but I think that the doctor then gave him another prescription that solved that problem. Maybe after you are off Xeloda for a couple of weeks and the problems have resolved, you can start doing this kind of preventative treatment and avoid the problems or at least not have them as bad when you start the Xeloda again. Thinking of you and hoping for the best. Amie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Sounds like you've had lots of great tips for handling the " hand/foot syndrome & mouthsores " ................ I just wanted to second what Dale said .............. it might be a good time to try adding some Celebrex. Not only should that cut down on the side effects ...... but it might actually even improve the results from the Xeloda itself. Sure has worked better for Rick! :-) Damn it .........it's time for you to get a break!!!! Hope some of these tips help you. That would make us all happy. Hoping you get relief!! Donna S. > Hi All, > > Well, today was the second of my radiation tx for spinal mets - I'm > supposed to get a total of 10. Haven't noticed anything > yet " efficacywise " (i.e. can't tell if it is " working " or not), as my > legs are still quite weak. I sure HOPE it is gonna help, cause I am > getting VERY, VERY, VERY tired of barely being able to walk!!!! > > But in addition to that, another thing has been REALLY bothering me > over the past few weeks. And that is the NASTY hand/foot/mouthsore > syndrome from Xeloda therapy. This is the main topic I discussed > with the oncologist yesterday. > > Well, actually...although the hand/foot thing LOOKS " bad " , I could > live with that if I didn't have these damn mouthsores!!! They have > gotten so bad, I can barely eat a piece of toast in the morning when > I get up! Needless to say, I am getting pretty tired of it (and I am > becoming increasingly worried not eating will rapidly start to affect > my overall health). So I need to do something about this right away > (!) > > The oncologist says that I need a bit longer " break " from Xeloda than > originally planned...like maybe 3 weeks (followed by a dose reduction > in Xeloda). Origionally, the radiation onc had suggested going off > Xeloda only while the radiation was being administered (2 weeks). > But given the way I feel (and my reduction in appetite combined with > increasing soreness of the mouth), I am not inclined to complain too > much about this! > > So - is this not a clearcut question of " how aggressive to treat " ? > The decision does not seem so hard. If mets start hurting again > (indicating they are growing) during the 3 week period, then I would > reconsider starting Xeloda therapy earlier than the onc is currently > suggesting (my hope/suspicion is this will not happen). > > Anyway - I think this idea is " in line " with what others here such as > Terry have suggested. If it doesn't " feel right " , then don't do it! > Decisions can ALWAYS be revisited - and that is what should be > done " on the fly " when things change or do not seem to be going as > planned. > > Just my thoughts! > > Best Wishes, > > Quote Link to comment Share on other sites More sharing options...
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