All about Xeloda
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Hi lubeeloo and all of you with experience on Xeloda- I am on Xeloda 2000mg total. My feet are red. But the main issue are my big toe tails. The are basically turned purple and white and are loose. I have stopped putting any water on my feet( use a shower chair have my feet outside the shower. just fatty cream. I am wondering what dose you were taking. He had me on 2500mg over the day and cut back to 2000mg. I am 7 days on and 7 days off.start to feel back pain around day 4 and feel a little nausea 2-3 days into my free week.
How long are you staying on this med? Does it work on liver mets. I am taking navelbine with it evey 2 week in the port. I havemy next CT scan november 19.
Any tips greatly appreciated.
Raven
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for me it cleared my liver mets. Now working on solution to bone mets
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How long did you have to take the Xeloda. before it cleared your liver mets. How long has it been clear.? Mine has already started getting smaller. Hope it works for me as well.
Raven
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hmmm, well they impro ved steadily but it was 6 to 9 months i thi k, i get pet scan every 3 montbs
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Diana-I am so sorry for you. But remember that my liver mets were so bad in 2004, that I only had a year to live.
Uh-that was 14 years ago and I am now NED for the third time. Prayers for a complete recovery for you!!
Goldie-what cute pics!
I only soak my feet in Epsom Salt for 15 minutes a day and it took away the big toe pains. But this past Friday night, my toe beside my big toe seemed infected-bad pain, hot, red and purple. I used Bacitracin, continued with the Epsom soaks, and ice.
Was going to call my podiatrist this morning, but it is better now. I also decided to take a week off of Xeloda, and I guess I should call my onc to let him know. My own decision, I know. My bad. But a toe infection would be bad anyway and he would have to give me a break anyway.
I am only on 2,000 a day, one week on, one week off, but have lost half of all of my toenails. Is this normal? They weren't too bad until a few weeks ago. TG sandal weather is over, since I can quit polishing my toenails.
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Miomix- Cancer Center called and doubled my pain medication. It is helping but I’m not with it at all. I don’t think there is a win situation here. I have to have my tubes changed out this afternoon. More dam pain. I dread it
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Dianarose....I don't know if this will be of any help, but, as I stated earlier, I woke up yesterday with the most horrendous pain in my right shoulder around the scapula area. The fentanyl and Tylenol were not reducing the freakin pain at all and I felt like a 90 year old woman that could not use her right arm without screaming.
Later that day, I remembered and had a friend massage magnesium oil all over my shoulders....I'm not kidding....the pain disappeared immediately!! Today i have the energy to walki in the woods looking for turkey tail, chaga and polypore mushrooms......by the way....for those of you that like myself suffer from diabetes...after just one week of chaga tea my blood sugar level is in the 90's instead of 130 when I wake up and I'm back to eating fruits and carbs that I couldn't consume while on Metformin without raising astronomical blood sugar levels...just sayn....
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Here's a new one! Just found out today that I have chemo-induced gout! Two weeks ago, on my week off, I woke up with a very sore and swollen ankle, an infected toenail on the other foot, very sore hands and feet. I knew that X caused the last 3, but not gout! I had not twisted my ankle or anything to cause it. The x-ray didn't show anything. My diet does not include anything in excess that could cause it. So I guess it is a SE? Will have my uric acid checked when I go for my Herceptin and it is getting better slowly. I don't want to go on steroids, so will have to deal with it.
Denise
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Denise, if the uric level is high, you might want to try increasing your intake of potassium and vitamin C, and see if that helps.... I found this on line: bananas can help decrease the symptoms of gout due to its high levels of potassium and vitamin C. Eating bananas can help deal with the pain caused by gout.
I am going to increase my potassium levels myself to see if it reduces my own aches and pains, but I will use green vegetables or potassium citrate as bananas are too high in sugar for my constitution
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oh goodness!
Maybe also. some V8? Commercial says as much potassium as a banana, one more, good luck
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I talked to my pharmacy specialist today and if my uric levels are too high, I can get Allopurinol, which won't affect my X.
I already take the max dose of potassium and Vit C.
Miaomix-make sure that you consult your PCP or onc about increasing Potassium. Too much or too little can cause severe heart problems.
For some strange reason, since I started on X, I hate bananas! I will have to try V8!
Thanks for the suggestions!
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Denny, I hope you can get it figured out. This disease can be sooooo frustrating!
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Thanks! With my 16 1/2 years on chemo, I sure can come up with the weirdest SE's.
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you're right Denise about the dangers of taking too much or too little potassium, but based on the FDA minimum guidance of 4700mg @ day, an individual would have to eat the equivalent of 13 bananas or 7 pounds of the richest potassium containing vegetables, something that no human being can possibly attempt, ergo the rate of heart diseases and heart attacks as being the number one killer.
Potassium as you all know, balances the salt intake, which in the typical American diet tends to be very high due to the consumption of processed foods. I resolved this problem a long time ago by making a pitcher of my own brand of MIneral Water that contains the minimum daily requirements of all the major minerals mixed in a lemonade sweetened with stevia which I drink throughout the day....and when I feel still sore and depleated I take additional magnesium.
Cancer destroys most of all magnesium, we lose it everytime we go pee....and we desperately need it to absorb calcium which keeps our bones from more deterioration.
At least that's what's happening with my body, but since we are all unique, your experience will likely be quitedifferent...
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hi all,
I want to share some good news. The pet scan results indicate no further progression and less uptake, so I get to remain on capecitabine, my favorite TX so far.
That means that the ingestion of medicinal mushrooms have not interfered with the TX, and my aches and pains are due to the TX and not to progression.
On Friday if the blood work shows an increase in White blood counts, I will pop open a nice bottle of champagne and eat two millefuille back to back, cancer and diabetes be damned...
I'm feeling very happy and relieved right now...as I sip a cup of polypore tea and share these news with all of you X lovers.....
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I couldn't wait till tomorrow I have started already with some assorted rugelah that I bought from a baker stand at the farmers market after getting a haircut....couldn't resists...carbs or no carbs...they are amazingly yummy....
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Hi gals- another Xeloda gal here. It has been a good treatment for me so far. I also had Y90 end of May that worked nicely.
Denny-gout is soooo painful. The allopurinol is a slower acting longer term treatment. There's a drug for acute gout that causes terrible GI symptoms.Losing toenails is a normal SE for Xeloda. I lost two when blisters formed underneath them-ugh! A great source of potassium is potato skins. My potassium bottomed out big time when I was receiving chemo for Stage I BC. I remember choking down baked potatoes as I was having trouble eating. Also had pills and IV potassium-very hard on the GI system as well.
Magnesium has very narrow ranges that are maintained in the blood, so too little or too much is no good. High Mg levels are a big culprit when pregnant women experience pre eclampsia/toxemia. Like many things in life- a fine balance is required!
Miaomix- the rugelach look amazing! Enjoy! Yay for the good results on the PET! Love that you go foraging for medicinal things in the woods! Have you read "Braiding Sweetgrass" ?
Dianarose-keeping you in my thoughts. Praying for pain relief.
Best, Mary Jane
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Thanks Mary Jane-I have done well the past few days keeping my pain medication on a schedule instead of waiting for the pain. I did wake up at 4 in pain and took a pill. I was able to go back to sleep.
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Dianarose-pleased to hear, rest easy dear MBC sister
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miaomix-oops-I see now what you mean. I take 20 meq of Potassium daily. When increasing Potassium was mentioned, I thought that you were going to increase the pills. Food is the easier way, but I need more than food.
LOL-I am in PA, but had to Google rugelach, since I had no idea what it was! They sure do look good.
Dianarose-prayers that your pain has subsided!
BTW-at the top of the home page, near the bottom....you can read what I stated about clinical trials. They interviewed me and another gal.
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I have had a little more control of the pain with the pain medication. The double vision is what is making me crazy. It has gotten worse. I pray this is not permanent. Very blurry took. Still no strength. I have difficulty getting up from a seated position. Thank God for dear hubby.
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dianerose hope you figured out a system, your body has adjusted and things aren't so scary.
Question: anyone have feminine itching with xeloda and what do you use?
It's not yeast or fungal. It's very annoying. Wondered if it was very dry skin like hands and feet. I'm on one pill twice day with no break.
I've tried jock itch cream, monistat, aloe, vit e oil, coconut oil, diaper rash cream.
Nurse suggested replens. Have to track it down. Aloe with lidacaine at least stops the madness temporarily.
Thanks
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Nothing like that with me Zills. Only 2 pills a day? I did 1 pill, 3 times a day with no break, but it didn't work for me.
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Thanks. Can't believe no one else has itching but most take a break. Knock on wood this regime is working. One year down, 20, 30, 40 to go. I'd get to hold my grandchildren and maybe great grands.
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TMI probably but just like chemo in first BC, I have what feels like small LEGO bumps on my labia. Went to a gynaecologist back then and mystery then. No answer.
I am now into what would have been the end of first week of cycle but off Xeloda for this cycto to try to minimize side effects like hand foot syndrome and cracks from my nail beds. This is so that I can enjoy the 3 week holiday we are on in Budapest and now starting a boat trip on the Danube. When we left 6 days ago I could barely touch anything with my left hand due the excruciating pain on left hand. I have no use at all in right hand so it was awful. Cracks healing and feet better too. Back on Xeloda when I get home but nice to have a break.
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I'd just like to throw this out there as a success (so far!) of Xeloda for me. I started on Xeloda on September 7, 2018 after being on Afinitor without any improvement. Based on my blood work from 8/31/18, my TMs were 200. They had been jumping up by about 40-50 points a month on Afinitor. I saw my MO yesterday and based on my latest blood work, 10/26/18, my TMs are 98! I know some of you don't put a lot of stock in TMs as a measurement but they have proved quite accurate for me as to whether TX is actually killing the evil stuff. Minimum SEs, the same ones about hands and feet, mostly hands for me but they are not uncontrollable with Lansinoh and bandaids!
I'm hoping to have a long and productive relationship with Madame X!
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Congratulations!
The first couple cycles can be rough as you adjust and figure out what's best. So glad you're on a trip.
There's never TMI here. Xeloda can make your skin weird. I have bumps/rashes. Glad it was nothing. Moisturize it anyway! Can't hurt.
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zillsnot4me
I have/had some sort of vaginal skin thing before cancer. The prescription I have is for Clobetasol. It has worked pretty well for me in the past if you can get your Dr. to prescribe it. My OBGYN diagnosed the condition and prescribed it.
Second line - Bye, bye my Xeloda friends. What I was so worried about happened. After 3 months on Xeloda - She isn't working for me. My TMs went from 215 to 278 in a month. Also, my scan added more hot spots. I keep trying to understand what I have and I guess it's in lymph nodes in my abdomen. Not in any major organs. That's the good news. I'm having another colonoscopy next Wednesday to try to get a bigger sample of tissue. The 2 I had before were to small to do much with. If that doesn't produce a big enough sample my Dr. will have the radiologist decide where the best lymph node is. I started with Faslodex last Dec., then added Verzenio in Feb, . That stopped working in June and I switched to Xeloda. It was such a great drug for me, almost no SEs to speak of, but It Didn't work. Oh crap! Don't think the next step will be pretty. Life was really good on Xeloda. I think my Dr. is puzzled that he's had me on 3 drugs in a year. I was diagnosed with ILC with ER positive, PR negative, stage 11 back in Aug. 2013. Stage IV in Nov. 2018. I'll let you all know where I go in case any of you have been there before me. What a whirlwind experience.
Karen
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Sorry Karen! Good luck with your next tx!
I went to my podiatrist today and she cut down my big toenails, so they have about 1/3 of their original length.
She told me to use Epsom when I have toe pain, but only to use 2 or 3 Tblsps each time. She said it is too drying for my feet.
For the infections, she told me to get Betadine which is OTC. And she said that since it stains, to let it dry for about 15 minutes before I put on socks. Or I can use a conforming bandaid strip, called Co-Flex around the toe.
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Zills, if it is not fungal, how about bacterial? Bacterial vaginosis. Caused by an overgrowth of the normal bad bacteria and not enough good bacteria. Your gynecologist can do a simple swab and look at it under the microscope to see if bacterial vaginosis is the problem. Then a course of presecription antibiotic gel would be prescribed. Post-menopause, so I assume on anti-estrogen therapy, the pH of the area changes in a way that favors the bad, itchy bacteria. To help correct the ecology, I regularly drink kefir that contains lactobacillus reuteri and L. rhamnosus. (Researched this well and got gyn's approval.) Also use a feminine wash with the right pH. I think all our bodies go through with cancer treatment just makes us susceptible to things.
I want us both to hold our grandchildren.
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