All about Xeloda
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Sometimes my big toes start oozing. I have to be careful to keep them clean, and I use a Q tip dipped i alcohol to keep them from getting infected. Isn't HFS fun?
Mimi, I use a vape pen with either Cherry Pie or Blackberry Kush for immediate relief of nausea. Edibles can take over an hr to kick in, and when nausea is bad, you don't want to wait that long. It's harder to control if it gets severe, so you want to tackle it as soon as you feel it coming on. Edibles are fine for sleep...you back time for when you go to bed. I usually take my at 9.30 or 10 pm because I'm one of those people where it takes up to 2 hrs to really kick in.
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Husband11, thank you for the links with articles about lower doses and 7/7 schedule.
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Shetland how are you travelling 12 days in? Any side affects?
My nausea is tough, I'm on kytril but it still comes in waves
I had what I think I is hand and foot syndrome on day 2-5, prickling feeling and sensitive skin, but it see,s ro have settled......
I am fatigued, but can't sleep at night....
Navelbine tomorrow 😫
Look forward to hearing from you!
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My wife's TM (27.29) has remained stable at 133 over a 3 week period. Prior to that it fell from 212 to 133 over a 2 month period.
Has anyone experienced stable TM (no change) on Xeloda or is this precursor to progression that we will find out next time ?
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Letmywife,
My CEA fell dramatically when I first went on X. That was over about 3 rounds. The last one I have results on was essentially steady. There is one more result coming but my MO is on vacation and I might not get the results till next week. She seemed a little disappointed that the last one was stable (up 3 points). So, we'll see. The first drops were huge though. And my PET at that time confirmed the good numbers.
My issue has been extreme fatigue. She feels I'm more exhausted than I should be even considering cancer and all the treatments I've received since the first of the year. I'm seeing an endocrinologist Friday.
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Thanks Kapiton. Thats what has been happening with my wife as well. It started with huge drops initially and now its stable. Would you mind sharing what your numbers looked like during this period ?
During the last CT scan done on 6/5 there was one spot found which grew in size and one new spot. But during all this time the TM has been falling. The onc ordered a PET/CT to assess those areas better before they can determine if it is progression or not (scheduled for today). Rest of the liver looks stable.
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Letmy,
At the end of using Ibrance I was at 188.7. During Faslodex, which did nothing and I had an undetected brain lesion starting, I peaked at 727.6 in December. I started Xeloda in February. In March I was down to 284.9, April was 171.8, May was my lowest at 92, and later in May was 96.8. ( remember that these numbers are not to be compared to "normal". You just look for trends.) The CEA numbers have been pretty accurate and predictive.
Seems like even on good scans something is always acting up a bit.
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Hi Ladies and Gents, may I please join the club? 2,500mg/day 14/7 starting tomorrow morning.
(It would have been 3,000 but I have a vicious travel schedule starting in a month and MO doesn't want me to run into trouble many miles away. We'll increase the dose if I tolerate this)
I have the same feelings as Shetland. This feels like a major step to me. Giving up hormonal therapy is hard. We considered Megace but among other things it's an appetite stimulant. I do NOT need to gain weight.
I have never been a girly girl of any sort and know zilch about lotion and hands and feet. Can someone provide some advice on exactly what I need to do in that area? I have calloused feet because I play a lot of golf and walk through a lot of airports. Do I need to start lotioning up now? Or worry only when my feet start to itch?
Last question. The literature they sent home with me mentioned an increase risk of infection. True or false? MO didn't say a word.
Pam
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Well, hello again, Pam. We are on the same dose and schedule, except I am two weeks ahead and almost to my week off. My onc didn't give me any Xeloda advice, but I think that is because she knows I will do lots of research on my own, and will call if I need to. I have been reading through this whole Xeloda thread in two windows, one starting at the beginning, and one starting 2016, in order to collect tips which I hope to summarize. It seems that there may be something important about urea being an ingredient in the foot lotion. A paraben- and fragrance- free one is O'Keefe's Working Hands, in a green container. I've been using it at bedtime. And hand lotion I use all the time anyway, also with no fragrance or parabens. I don't plan on gooping up a lot and wearing socks and gloves at this point.
(It's interesting to hear that you and your onc considered Megace. I wouldn't mind hearing more about that.)
Emily-Louise, thanks for asking about me. I have been lucky so far. Sometimes my feet feel a little itchy/burny or fizzy (light tingling), and sometimes they look red, but it goes away. I have had some mornings with some slight queasiness at breakfast, but that passes too. I decided to start the morning with ginger tea (just ginger root -- it's anti-nausea and anti-inflammatory) with lemon to ease my tummy into the day. Maybe you should ask your doc or nurse for more help with the nausea. I think there are lots of medicines to choose from. Do you know why you are having trouble sleeping?
Back later with a cancer geek research summary about hfs...
(Edited out a sentence about Megace that wasn't properly thought out.)
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Hi Pajim,
I have completed my 3rd round of Xeloda two weeks on one week off with no SEs. When I first started it I had to sign a paper with my MO and chemo nurse who councilor me with a bunch of things not to do. I work in greenhouses and it's rough on the hands and feet. Sometimes I walk 5 miles all together and work in dirt and pull hoses to water. She told me no raking or stress on the hands and no trauma like getting blisters doing work. No treadmill or long walks. Use Utter Balm on your hands and feet Day and night and no socks that cause friction. She told me to only wear pure cotton socks. So my mom ordered a bunch of Bobbie socks from the Vermont Country store because it's hard to find pure cotton. I bought a really good pair of hiking shoes and I wear padded gloves to work. My job is labor intensive and due to the bone mets all over too I can't lift but I managed to pull hoses and plant and just went to Newfoundland to hike up mountains to find Puffins sometimes 3-4 KS and I literally have had no SEs. My feet are smooth with no sores and my hands are a little red but my MO said that is a SE from liver trouble.
I feel great and my alk phos liver enzymes have come down from 400 to 200 so something is working. The only trouble I'm having is my platelets are low, anemia, low calcium, low potassium, and low protein. I'm not sure how to fix this yet but maybe diet. My MO put me on caltrate twice a day but as for the other things I don't know. Maybe someone could give me some hints. If anyone has any suggestions for boosting my values I would love to hear what you do.
Hope this helps, Pam.
Hugs to all on Xeloda and hoping for the magic cure!
Anita
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"Once more, into the breach!" she cries, downing the first set of pills. I just love new treatments. You have zero idea what is going to happen.
Here's hoping the muffin and OJ I took it with are enough. I didn't get nausea on A/A until the third week.
Shetland, Anita, thanks for the advice. All my onc told me was to stop taking X after 14 days and not to worry about hand/foot syndrome. He's one of these people who firmly believes that if he lists all the side-effects his patients will get them all. (No he doesn't believe SEs are psychosomatic, but he doesn't want people to get the anticipatory ones). I was warned about lip cracking and diarrhea and told that if anything bad happens to simply stop taking the drug and "you know where to find me."
OK this is going to sound crazy, but the bag balm type lotions don't rub in. So I put them on and then what? A pair of socks so I don't grease up the bed? What about in the morning? I wear sandals to work in the summer.
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My wife prefers sandals over shoes. Shoes and socks bother her. She wears the athletic kind, with a soft foam rubber bed for the feet. The cracking was worst wherever she had callous on her feet. The callous all pealed off eventually, and now her feet are smooth. No more cracking, but instead burning, that especially bothered her at night. Some times she uses ice packs on her feet in bed to cool them off. She has used a variety of foot creams, from the highly recommended urea, to salicylic acid and differin. No one was so superior that she abandoned the others. Some times she just uses cerave cream.
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Pam, welcome. I read a lot, posted a few times. What I learned was from here.
Yes, use salves now. Lotions are not enough. My list for Hubby to bring home came from here. He bought all of them and they are everywhere. Choices, Udderly Smooth WITH Urea. Palmer's Cocoa Butter. Bag Balm (Vermont's original is what I bought). Super Salve. Also Ojibwa Tea Salve which I bought and love, use it most, very healing.
Went to oncologist yesterday. New one since mine moved to Alaska. New one said yes to my request that I go on the 7 days on / 7 days off. I asked if he wanted me to take 5 at time and he said the SEs are too great for too many so 4 ea time is what I will continue on.
I like my new oncologist too. He sits quietly and really listens. Not busy or hurried. And he has good eye contact. Gentle man. Open minded I say since he was yes on the 7/7. My other onc was similar and loved him. This is a good replacement having Dr. K instead, grateful for that.
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Thank you for this link "Link to full case report:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC53402... "
Just what I have been looking for.
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Pam, O'keefe's hand cream is good, too. It comes in a little green hockey puck style container. Odorless, absorbs easily, and works for both hands and feet.
I recommend taking B6 and B12 to help with stinging, burning and neuropathy in finger tips. It will be hard to grip things or put tiny earrings on if the fingers get too bad from hfs. Start the vitamins and creaming the hands/feet BEFORE it becomes a problem. (I've been on X for over a year now...)
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I will be probably leaving the Xeloda thread soon. Inspire of falling TM, PET scan today confirmed what CT had suspected. Out of f 10+ lesions in the liver, 1 has grown bigger and 1 new has appeared. For the rest of the lesions, CT shows stable and PET did not light up. The onc is considering it as aprogression and wants to switch treatment.
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Welcome newbies. The people here are wonderful.
Letmy, so very sorry about your wife. Hoping the next treatment works wonders.
Lita, thanks for the vapor info.
Yesterday was my wonderful mom's funeral, and because of X SE's, I almost didn't make it. My whole family was in town for the services, and I spent almost the whole weekend suffering greatly. Much of the time in the bathroom or in bed. Couldn't eat for two days. And it took all my might to get out of bed, and get dressed, and sit in the church. I'm so pissed and upset, that this f*cking disease and chemo, took away my proper mourning of my mom, and the rare special time to spend with loved ones from far away. I will again be asking my MO about changing my dose, possibly to the 7/7 cycle.
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Mimi2kleh, I don't know what you are taking as far as dosage but my MO said there is a fine line to this chemo so it doesn't cause toxicity to other organs. They did all of these calculations in front of me and decided that I should be on 1500 twice a day. 12 hours apart take within 1/2 hour after you eat. They may need to lower your dose so you don't feel so bad. I would ask them, maybe you are on too high of a dose which can cause the SEs you are describing. So far this dose is not causing me trouble but it's not the lowest dose nor the highest dose. Sorry for your loss too.
I guess in July I will find out if it's really working when I have a CT. But liver enzymes are dropping fast. Hope you feel better. They gave my anti nausea mess but I don't take them.
Thinking of you,
Anita
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Hi Ladies,
Been posting this am but wanted to share my only positive thing that's happened to me. Every time I go to MO it seems like not such great news. Today I found out just now that on May 9 my TMs were almost 2600. Today my MO sent me a message that my TMs are now 272 after 3 rounds of Xeloda!!😳 I'm in shock and just wanted to share some good news today. I can't believe it. Love to all,
Anita
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photogirl that's amazing! Looks like you found the right treatment. Congratulations. Let that happy news carry you through a terrific summer ahead.
Im on my third cycle of X.I'm waiting for my happy news in July. Fingers crossed.
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Yep, Photo, Xeloda can kick some serious butt when your cancer is vulnerable to it. But this is not without a price...nausea, diarrhea, and severe fatigue and hfs for some.
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Pajim welcome I am two cycles ahead of you Just finished second cycle So far so good in terms of SE's Constipation is my issue Really because I was told the opposite!! I get how you feel about jumping into the breach! I have a muffin, or a couple of slices of toast in the AM with coffee and a glass of water. Seems to have worked I am using Udder Cream on my feet. They were a mess previously with calluses and cracks So far no worse Fingers crossed
Photogirl WAHOOOOO! great news
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Thank you Stefajoy, Lita and Nel. So far no SEs. I actually feel better now since I can't remember. I hope I get a good run with X.
STEFAJOY Keep me posted I think we are pretty much on the same timeline with liver mets and Zeloda.
I have been waiting for just a little good news, I guess today was my day.
ANITA
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I have just completed my first two weeks on Xeloda. (Waits for applause. Thank you.) Hands and feet are ok! Just touchy enough to let me know the pharmacy did not give me sugar pills.
Photogirl, what a super drop in TMs! You deserve to relax and enjoy feeling good. Your happiness is my happiness, sister!
Stefajoy, have you noticed any difference in side effects from first cycle to third cycle? Hoping, hoping you have a great scan next month!
Mimi, cancer is a thief. The lowest of the low to interfere with your participation with your family as you mourn your mother. I'm so sorry.
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Shetland, No hsf as we head into third cycle. Going to Mexico next week. Will be in sun and on beach a lot. Should be interesting to see what happens. I have daily diarrhea, but better diarrhea (if there could be such a thing) than when I was on Ibrance. The tiredness is a bit worse than on Ibrance, but no worse into the third cycle than the first.
I'm currrmetly experiencing someMuscle spasms in my back and my foot. Literally, right now I'm on the floor. Don't know if it's X related. Anyone else have this?
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Stef, no experience with that...but how are your potassium levels? X can deplete certain minerals. I try to eat a banana at least every other day for the potassium.
Be sure to take Imodium with you 😜. I would recommend NOT eating any fruit that you can't wash and/or peel yourself. Same with veggies. As long as it's cooked it should be fine. Just follow the normal tourist guidelines...only bottled water, etc. Even brush your teeth with bottled water. Sadly, I ALWAYS get sick whenever I go to Mexico, so I won't be going back anytime soon.
Have a great time, and don't worry about cancer.
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Lita, I'm glad to hear what you are saying. I had blood work on Monday and I've always had good calcium, protein and potassium and this time all of those values were low. I was in Newfoundland and hiking and felt a little muscle aches and then I was flying home and got a puke bug 🤢, which I never get and two days later my values were off and couldn't get my Xgeva shot. My husband was wondering if Xeloda depleted my minerals. So my MO told me to take Caltrate drink milk and I'm trying to sort out the rest to build those value up. Any ideas since you know about this?
Stefajoy, since I've been taking my 3rd round I too have leg cramps especially when I get up in the am. I thought it was from hiking but I bet it's a low potassium because I know you get muscle cramps from that. When you go to Mexico don't eat things that have been washed with the water there. Unless you are at a good resort you my get sick down there. Only eat things that you can peel, watch the ice if you have something to drink. I always have drank bottled water and watch the salads they use their water to wash. You don't need Montezuma's Refenge!!🤢I've traveled there many times and I'm real careful even before I had this cancer. Drink Gatorade too. Watch the sun. I was working outside in the sun yesterday and my arms have these funny red spots😳 This med might make us sun sensitive. Hope this helps. Have an awesome trip, travel smart be careful and forget about cancer for your time away.
Hugs,
Anita
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Anita, congratulations!!
Letmywifelive, I'm so sorry.
Stefajoy, have a great time! Take Immodium with you. Are you having to take the meds? Or is this your off week?
Nel, whenever a nurse or doc says "watch out for diarrhea" I laugh like crazy. Good luck giving me diarrhea. It just means I'll have to stop taking the Colace and senna that I usually take. Of course now I've jinxed myself. Famous last words. . .
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Xeloda makes us VERY sun sensitive. I invested in some light weight, long sleeve shirts because my arms tingle and throb in the sun even with gobs and gobs of sun screen.
My MO has me taking calcium supplements because of mineral depletion caused by X. Talk to your MO about potassium supplements. Some of us have to take them as well. Bananas, raisins, prunes and other thing have potassium, but watch the prunes and raisins if you're prone to diarrhea like I am when on an X cycle.
Off to the movies to beat the 100 degree heat wave today.
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Photogirl - I too felt better than I had since this trip began 6 years ago. To the point where I was concerned enough to speak to my onc a "If I feel this good, is it effective?" conversation. He assured me one had nothing to do with the other! Let's hope Just finishing my second cycle, and still feel better than I have in ages, not the "high" I had first cycle - but not trudging through sludge every day. That was the only way I can describe what it felt like before.
Pajim - I am now taking Colace feel like I weigh 1000 lbs fruit, juice, Colace.....
Be well all
Nel
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