Hi Guys. My husband has just been in to hospital to receive his Avistan injection and we are about to head off to Perth to begin our three week trip to America. We are spending 2 days in Santa Monica,5 days in Toronto visiting relatives as well as going to Niagra Falls,6 days in Knoxville Iowa for speedway,5 nights at Treasure Island Hotel in Las Vegas (husband is going to drive a ferrari & a lambourgini for 10 laps around Las Vegas Speedway) then a day and a half in Beverly Hills.(Then home for more treatment and an MRI) Its almost a year since my husband was diagnosed and this is the holiday he has always wanted and we thought we wouldn't be able to do. Sooo excited (3 weeks without having to think about cancer except for making sure he has his chemo tablets. Take care Regards Gail.
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Have a great time!! Do everything! Samex
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Hey Gail SOunds wonderful and will wait with baited breath for when you both get back and some stories re the lambo and speedway. Have a fantastic time!! Julie xo
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What a wonderful trip. Just enjoy...enjoy... and enjoy! Yes, please...let us know about your adventures upon your return. Reindeer xx
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Have been to Santa Monica and had a great time. Did the open bus tour of LA and Beverly Hills. We are now in Toronto staying with cousins and went today to Niagra Falls and did the boat trip Maid of the Mist that takes you right up to the falls. Was awesome and my husband said he was so glad to get the chance to do this even though he can hardly walk from the pain in his feet (and hands)as a side effect of Xeloda tablets.Does anyone know of any good painkillers that will enable him to walk without all this pain especially while we are away. Regards Gail
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Hey Gail ... I don't have any answers for you but am trying to find some information for you. :) Julie xo
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Hi Gail I have found an american forum with people commenting on problems with xeloda. The general consensus seems to be to wear socks to bed with some sort of balm (guessing its a moisturiser that they call "bag balm"). They are all commonly saying to keep the feet elevated as much as possible. Pretty difficult when you are travelling but i guess if you can do that as much as you can it might help. I would go to a chemist re the pain issue and see what they suggest. Follows is another bit of info i just found on a foot soak. XELODA - FOOT SYNDROME sr2603 * By sr2603 * Posted June 3, 2009 at 9:14 am · 22 replies * In Recurrence * Shared with the public 0 Recommendations * Recommend * Print * Report post Hi girls. Completed one round of Xeloda. Horrible nause which I hope they can sort with Zofran next cycle. 12th day had terribel pain in feet. Then 14th day the same. So much so I had to take a half day. When I sit down or elevate them pain is not bad. Just when I stand on them. Pads of feet on fire. I am rubbing on the bag balm and udder cream. No cracking, just intense burning. Any hints? View 22 replies Explore topics in this discussion: Cancer Surgery Allergies Avastin Dermatitis Blisters Breast cancer Vertigo Constipation Pain Heartburn Diarrhea 22 replies * Oldest first * Newest first cimamom * By cimamom * Posted June 3, 2009 at 10:37 am * Report post How much are you taking a day??? For me, I started off with 3500 mg a day and by the end of the 2 week cycle my feet were burning. Make sure you are in contact with you onc. on a regular basis. They ended up decreasing my dosage a couple of times to where I was able to handle things no problem. My 2nd round I did 3000 mg. and by day 12 I had some burning...and my 3rd round I was on 2500 mg ...that seemed to work fine. I got some relief for my burning feet by setting my feet on ice packs. Don't be afraid to let you onc know what is going on. Some people even go to a 1 week on 1 week off cycle which seems to work well too. I hope you find some relief & the right balance to be both effective and give you a good quality of life! Blessings to you! Saraj * By Saraj * Posted June 3, 2009 at 11:14 am * Report post Great advise from Cimamom. Stay in close contact with your oncologist. My Oncologist cautioned me to call right away when this started, since the burning will continue a day or so after you change the dose and could get worse. Do not try to simply "gut out" the burning sensation. Be very respectful of the Xeloda and call right away as things change. Good luck. ReneP * By ReneP * Posted June 3, 2009 at 12:08 pm * Report post i agree with the gals the does is originally set by your height/weight but can be adjusted due to side effects. my onc had me on 1500 2x a day for 14 days. (in combination with radiation) for me - cycle 1 burning on day 13. Before next cycle onc. says to STOP if/when it gets worse during cycle 2. cycle 2 burning blistering day 13- stop xeloda early. cycle 3 the onc set it up to only go 12 days. (and even still on day 13 i had burning)... cycle 4 - i'll be off radiation and lowering my dose to 1300 2x a day so hoping for less side effects. udderly smooth cream, cool water soaks, avoid HEAT on the feet etc have helped me. but its very challenging at times. and i have had nausea too. doing ginger tea & candies some of the time and zofran other times. EyesOTex * By EyesOTex * Posted June 3, 2009 at 1:39 pm * Report post How long after starting the treatment does the nausea and/or diahrrea start? i'm starting 3500 xeloda tomorrow and going on a day long car ride, then another day long car ride Friday or Saturday. Should I wear a diaper and bring a barf bucket??? Please advise! sr2603 * By sr2603 * Posted June 3, 2009 at 2:32 pm * Report post Hi girls. Thanks for the info. I am only on 2500mg a day. Dont know if the dose can be any less than that. If I can get to day 12/14 the way I did first round, I can handle it. I am just concerned as time progresses it may get worse. Who knows. Everyone is so different on this. Cimamom, I dont know how you tolerated 3500mg! Phew. sr2603 * By sr2603 * Posted June 3, 2009 at 4:04 pm * Report post Yes o Tex I had nauseaa but was not actually sick. Did not have any bowel symptoms at all. hazelmarie * By hazelmarie * Posted June 3, 2009 at 4:39 pm * Report post Hello all the Xeloda Queens! I've been on Xeloda since last October and think it's the BEST, since nothing else was working for shrinking the tumors to my lungs! I elevated my feet as much as possible and keep em on ice packs too! Hands too, sometimes I take the ice packs to bed and hold on to them til I fall asleep, no problem they don't leak or sweat, they stay dry! Also wear those cotton gloves and golf socks to bed with plenty of Bag Balm smeared all over the bottoms and between the toes! I've had the hot and burning feet and hands and the cracks that break open and bleed sometimes too but hey, it beats the alternative! (growing tumors, that would eventually choke me off) The onc. started me on the 3500 per day and then lowered it to 2500 and that's where I've stayed and just recently put me on the one week on and one week off! That really does work pretty well. Try not to do any cooking in the afternoon, that brings on the nausea for me and don't forget to eat your oyster crackers between meals! It helps greatly! My eyes are really dripping constantly, but are stuck shut every morning. I reach for the eye drops until I can finally get them open enough to get up! Still there's no infection or colored junk, just lots of tears, crazy huh? Are the Xeloda nurses calling you to see how everything is going for you. It's a very nice service with taking Xeloda and free and very helpful! They will even contact your onc. for you if you want her to. Best wishes to everyone and stay the course! We can do this! There were times when I didn't think I could bring those pills to my mouth but guess what? Every time I prayed for strength, asked for God to help me to do it and I did it, never missed a dose! It works, and that's what I know for use!! Also never had any bowel problems with the Xeloda, no diarrhea or constipation! 🐵 me happy! (((hugs))) hazelmarie lynnwv * By lynnwv * Posted June 4, 2009 at 7:35 am * Report post Good Morning ladies, I've been on 2000 mg of Xeloda a day along with 1250 mg of Tykerb (which also has hand/foot as a side effect) since 3/3/09. Just got back on after a two week break for surgery. The Tykerb is constant, but I do the Xeloda 2 weeks on 1 week off. I wear gloves every night with the bag balm because if I skip a night or two I can feel it in my hands. I've had to stop knitting, which makes me sad. My feet have been better, but there are days they are on fire. I try to soak them in cool water. I also am going to start soaking them after my morning walks (which I refuse to give up). I didn't have nausea until my 5th round and it kind of comes and goes. No real predictability to it, one day I'm fine the next is yucky, but I'd estimate it's only 2 days a weeks. It does seem like the tiredness is accumulative, but that may be because before this round I had surgery (may not be 100% recovered from that). The bowel symptoms are constant with me, although not extremely severe (that is also a side effect of both drugs). I always have a plan of where I can stop when I leave the house! They usually hit me on the second day, then level off at the end of the week and then come again toward the end of the cycle. It doesn't seem to matter what I eat or if I eat. I don't know if it's pscho or not, but if I don't get my walk in I seem worse with the nausea and the bowel stuff. You guys are awsome!! I can't imagine 3500 mg. But it is a good drug combo for me so far. sr2603 * By sr2603 * Posted June 4, 2009 at 8:14 am * Report post If I did n ot have to run around at work so much I could tolerate the foot thing. When I sit or have my feet elevated they are not so bad. But when I go to stand up or walk around its hell on earth LOL. Hopefulyl its just a couple of days though and I can try and work round it with my employer. I just thank the good Lord I work in an office and can sit some of the time My heart goes out to our sisters who work in grocery stores or the likes of Walmart where they need to stand all day. Dont know how they do it. Hugs to all you wonderful trooperes. Ahaha * By Ahaha * Posted June 4, 2009 at 9:50 am * Report post Where can you buy suitable cotton gloves and socks? Most of the socks I find are too binding and I haven't found any good gloves, though I bought some cotton gardening gloves: they seem too big and bulky. I tried diabetic socks at $12 a pair, and again they were binding and uncomfortable. I have only one pair of socks that I like -- from LLBEan, fuzzy sock slippers, and they don't make them anymore. kleighk * By kleighk * Posted June 4, 2009 at 1:38 pm * Report post Most drug stores have soft cotton gloves displayed with the diabetic care stuff. That's where I found mine and they are very, very soft, and cheap! onemoretime * By onemoretime * Posted June 4, 2009 at 3:11 pm * Report post Go to Walmart for cotton socks. They do not have to be special, just all cotton. If you try to use the "medical" ones, they cost too much and aren't any better. I take 4000 mg a day and have minimum symptoms. I was doing 2 weeks on and one off but we changed to 1 on and 1 off. Much easier to cope. When the symptoms get worse, I call oncologist and they immediately tell me to stop and start after a week's respite. The best news is that I started in November 08 and my blood markers are way down and my lesions are staying unchanged! Yah! CSF * By CSF * Posted June 10, 2009 at 7:28 pm * Report post Re Hand and Foot syndrome from Xeloda- I just read an article that came out the 2009 ASCO conference.. here is the link: http://www.abstract.asco.org/AbstView_65_32846.html "LC07 granules 10g was dissolved in 1,000mL of warm water (keep 34°C-37°C in a footbath), the patients soaked their feet and hands in this lotion for 20 minutes, twice daily for 7 days. An independent researcher assessed symptoms before and after treatment. Evaluation criteria, CR as symptom disappearing completely, PR as NCI-CTC grade for HFS decreasing by more than 1 level after treatment, the total response rate as CR+PR. The QOL of these patients were also evaluated before and after treatment using a FACT-B questionnaire (Version 4.0-Chinese). Results: 42 patients (pts) have been enrolled in this study. All of them are Asian and female. Media age 51.5 yrs (25-72). Grade 1 for HFS was seen in 8 pts, G2 in 19 pts, and G3 in 15 pts. The total response rate was 83.3% (35/42), CR 38.1% (16/42), PR 45.2% (19/42). The average time from therapy to pain relief was 1.8±0.8 days, the skin lesion of HFS including dermatitis, peeling, ulceration have been improved after treatment. The QOL scores before and after treatment were 77.24±25.69 and 109.17±20.53, respectively (p < 0.01). No side effects such as skin allergies related to LC07 was found in this study. Conclusions: In the treatment of capecitabine-induced HFS, the external Chinese medicine LC07 is fast effective for relieving pain, and it has the features of easy use and no skin allergies. Thus LC07 can improve the QOL of patients with MBC and HFS." Good luck with finding some relief and your holiday sounds wonderful so far ... can't wait to hear re the rest of it. Julie xo
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Have a ball Gail!!! Time away from everything in a new environment, visiting people & seeing new places is just what the doctor ordered for you both :D 3 weeks of sheer pleasure...u deserve it ;) Enjoy...Mez 🙂
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Thanks Jules for looking for that information for me. I really appreciate it.Will see if we can get some of the chinese herbal medicine granules to use as a soak.I think I will ring our Oncologist on Monday and see what he suggests. Having fun Speak soon Gail
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Hi Gail, My feet were not so great when a friend dragged me around NYC last year. Had a ball!!!! Does your husband have some really squishy socks and maybe some spongey inner soles? They may help a little. Hope you are having a ball despite to crummy hands and feet. S
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