All about Xeloda
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bigbhome. You get a MD A tumor board without going there? WOW that's impressive. MD A is my #1 cancer center. I've been there so many times for me and my husband.
Shetland. Yes, you know how long I've suffered through my former MO. I'm going, going gone. Hehe
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+I'm here to say farewell to my Xeloda buddies. A biopsy of my bone mets shows a strongly intensive E+ P+ pathology when we thought it was triple negative. So now I'll be doing Femara/Verzenio instead. I had a good four years at least on X which worked to some degree. Never had any side effects from it.
Wish me luck!!
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good wishes and lots of love winning so far. Go kick that positive BC!
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Winning, my response is out of ignorance, but isn't it FAR better to have strong E+ P+ over triple negative? I think that I'd be thrilled. My cancer appears to have recently mutated from ER+ PR- HR2- to triple negative. Good luck with Verzenio! Hoping for the very best for you!
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winningsofar sorry to hear X is no longer working after so many years, could you please tell me how frequently you were monitored during those years? Were you undergoing the typical three months interval Pets scans, or was it less frequently....thank you very muchand good luck with your next treatment...
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I've been taking Xeloda for a few months now. This last batch I received has a slight taste of star anise to it.
I love licorice so no problem w/ that, but! anyone else experience this? I googled it and came up with....nothing!
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Oneandun, Welcome to Breastcancer.org!
What an odd change you're experiencing! Have you by chance started another new medication/supplement or other diet change? Could that be interacting with how your Xeloda tastes?
Keep us posted with what you find out!
--The Mods
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A dose of mineral oil daily works for me. It usually works on day 2 or 3. Best to check with MO
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Hi Mod,
Nope, no changes (diet or meds wise). The only change, that I didn't really clarify in my previous post: This is a brand new batch. I'm thinking maybe it's from a different company or something.
I really like Star Anise and used to use it quite a bit (which is why I recognized the taste), but I haven't used it in anything for a couple years. I know it's used in Traditional Chinese Medicine. and I think it was an ingredient in tamiflu pills a few years back, but I've taken hundreds of these Xeloda pills and this batch is the 1st one like this.
It's not alarming to me (thank goodness!) but just seemed weird so thought I'd see if anyone else is noticing this.
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Will be starting on Xeloda in a couple of weeks. Feeling apprehensiv!! Cream, gloves and socks ordered. Got lots of tips from this site, thank you, maybe I will be able to add some of my own soon. Hoping I can tolerate it and it does the trick
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Winning, good luck on your next treatment, but I'm confused why you would have to quit X because of hormone receptors? I am ER+, PR+
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Joyner, I want to mention a distinction. I asked a rock star oncologist if I was correct in thinking that if I had ER+ mbc, and it is no longer responding to anti-estrogens, it is not considered to be triple negative now, because the biology is different. He said, "Correct". It is endocrine therapy-resistant, but its mutational profile would not be a triple negative profile. I do not know, however, if it would still test ER+ on biopsy. But even if it lost ER+, I still think it would be a different beast than TN. Did your docs say anything about this?
Winning, did you have recent progression on Xeloda? Or is your onc just changing because of the ER+? If so, I guess Xeloda is still in your arsenal for the future.
Good luck, Yvette. We are with you.
Oneandun, I'm intrigued by the star anise mystery. Did you ask the pharmacist? Who is the manufacturer and have you looked up the full ingredients for that brand of Xeloda? Could it have been stored with star anise and picked up the scent/flavor?
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Hello,
I just finished my week of 1500 mg Xeloda. Twice a day. Starting last night I feel shaky and my heart is beating fast. Didn’t really sleep much last night. Is this a lasting side effect? I hope not. Is there anything I can take to make it better? Thank you
Ilene0 -
Last year I met with the integrative clinic at our local university hospital and one of their recommendations was to ensure at least one bowel movement a day. They recommended taking 300 mg of magnesium citrate daily o help with that and adjust as needed. It's a natural laxative.
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ihopeg...what you described is not a typical side effect of xeloda...(that I'm aware of) I recommend you speak with your oncologist about it ASAP.
Hopefully, they will be able to resolve the problem....I find capecitabine to be a very good treatment, so I hope you can benefit from it for many years to come....
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Hello, I'm due to start Xeloda tomorrow. I wasn't able to find a lot about dosage in this thread but it seems mine is higher than most. I'm to 2000 mg (4 50mg tablets) twice a day for 14 days and seven days off. I weigh 138 libs if that matters.
Also wondering about exercise. This site said don't put pressure on your hands or feet. I was wondering about exercise. I normally walk an hour 4-5 days a week or do a treadmill. I don't swim as I'm afraid of the water. If I have to avoid pressure on my hands and feet, what kind of exercise could I do?
Have many been fortunate to not develop the hand foot syndrome. That seems to be he most upsetting to me.
Blessings to you all.
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Dorimak 8 pills @day could be considered typical, although you don't weigh that much, but the 14 days on and 7 days off is atypical since most MO use the 7days on 7days off developed at MSK to minimize the hand and foot disease.
It might be a good idea to question your doctor about that detail. It might be justified if you have a very aggressive cancer, otherwise I personally think it's way too much medication.
You could also start taking it as prescribed, see how it affects you, and then you would have a legitimate reason to complain and go on a reduced schedule or amount.
In my 4 years experience taking cancer medications, I found no correlation between the amount prescribed and results. In fact the contrary is true.
Also, after 9 months on X I still don't have any hand and foot and can easily walk one hour @ day.
I hope you experience great benefits without any suffering as well.
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Thanks Miaomix. That is helpful information. I will call my MO and ask about the dose and the 7 X 7. It sounds like many are on that schedule. I wish you continued success with this regimen.
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I was originally put on 3500mg/day (4 morning, 3 night) on a 14 day on/ 7 day off schedule. I developed hand and foot syndrome quickly in my feet in the first cycle and was lowered to 3000mg/day (3 morning, 3 night). I'm 5'9" and 134 pounds. I agree with Miaomix, your dosing does sound a little high. The oncologists I see in Northern California (UCSF and Stanford) prefer the 14 day on/7 day off schedule. MSK is a top cancer treatment institution, so I believe the 7 day on/7 day off is also a good schedule and certainly appears to reduce hand and foot syndrome, which is why I brought it up with my doctors. I'm still experiencing some hand and foot syndrome in my feet, so they preferred reducing to 2500mg (3 pills morning, 2 night) and remaining on the 14 day on/7 day off schedule. I won't hesitate to dose reduce if my feet get worse, but for now I am sticking with 3000mg/day.
As for exercising, I love walking and hiking. Unfortunately, I've had to give it up. Now I take cycle and yoga classes. I may try swimming when the weather warms up. I'm a baby about getting into a cold pool!
Other than sore feet, I feel really well on Xeloda. My first PET/CT scan (after 3 months on Xeloda) showed significant cancer shrinkage, so I'm very relieved and grateful!
Best wishes to everyone!
Theresa
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dorimak, Ive been on X since January. My dosage is 3000 mg per day (3 pills am and pm) 7 days on and 7 off, as recommended by MSK (Memorial Sloan Kettering) in Manhattan, my second opinion and back up doc. My local onc recommended and agreed to this dosage and schedule, too. I’m 5’7” and 130 lbs. I’ve been told by two doctors that side effects are cumulative, and that seems to be supported on this site. So far, I have only mild redness and soreness on the soles of my feet on the seventh day on. It goes away immediately when I stop the pills for seven days. I suspect that this will increase ultimately. I do slather creams on my hands and feet at bedtime And wear some odd socks to cover the cream. I found those on Amazon. Happy to share the source if you are interested.
ShetlandPony, The small recent skin met which showed up on my forehead tested as triple negative. My bone only BC has always tested as ER positive, as recently as a bone biopsy in December. MSK says that my Bones may still be estrogen positive, but they have to treat for the worst possible scenario, which is triple negative. There is a new treatment For triple negative which is just been approved in the US and in the UK, Is a form of immunotherapy which they are hoping will be effective in BC. We’re looking into that, to see if it would be the next option for me. Unfortunately, from what I read, triple negative finds its way around treatment much more quickly than ER positive.
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Hi everybody, I´m on 2x1450 mg per day, 14 days on, 7 days off. I´ve been creaming, icing etc. from day one, and am now finishing my second cycle (this is my week off). During my first cycle by mistake I took only 2 x 1.000 mg. a day, which went well. Overnight, on the 10th day of my second cycle (full dosage) all of a sudden the soles of my feet became so sore that I couldn´t walk, my lips turned burning red and sore, and diarrhea and set in. This lasted until two days into my week off. I´m in a clinical trial so changing to 7 days on, 7 days off is hardly an option. So now I´m thinking of dose reduction for my third cycle. I read from your posts that height/weight matters regarding dosage. I´m 5'2'' and 99 pounds. I just wonder to what extent dosage reduction may influence effectiveness?
All the best to everyone.
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ADDK...there are women that have been on low doses and are doing well after many years...however, if you’re part of a clinical trial, you will need to follow the protocol as prescribed or inform your doctor of the side effects and see what he/she decides.....how the medication affects you and everyone else on that trial is knowledge they need in order to figure out what to do with that combination of medication....
I hope you benefit from the tx while preserving your health....like a very wise man said a long time ago: Measure is All!
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Miaomix, thanks a lot for replying! I think dosage reduction of Xeloda is permitted under the protocol. I will try to go for it at leadt
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Hi folks, I'll be joining you here. I begin Xeloda on the 1st of April. 3 x 500 mg, twice a day x 14 days, then 7 days off. I'm 5'6" and a horrible 220 lbs. (So much weight gain in the last few months on Halaven, aaaaack)
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Good morning, my dear...it's so nice to see your name and hear your voice again, Amarantha! How are the operas and the writing? xoxox
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Howdy Lynn ! I am happy we are on the same thread again ! How in the world are you doing ?
I've been terrifically busy with my opera reviews and quite a lot coming up, which keeps me hopeful ! I find myself a bit down when there is a week without an opera trip, it really keeps me out of trouble.
I am glad we are changing the treatment protocol, I've been having very sharp pain (like a knife cutting and scraping my skin away) from the infiltration on the right side. The oncologist blames this on "adhesions" of the infiltrated skin and tissue to the ribs .. I have been given fancy and effective pain killers, but the pain killers turn me to mush. She says more chemo is the only way to resolve that. I just had my hair dyed a lovely shade of chocolate, and immediately afterward my hair started falling out. So I'm losing my hair, in pain, and also am constantly vaguely nauseated from the build-up effect of the Halaven, which is also not working. Ha ! So of course I am very hopeful that Xeloda will help with all of this !
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Hi, thanks to all who responded. Ii called the specialty pharmacy and asked them how they determined the dose. Apparently it's based on square meters body size. I gave the pharmacist my height and weight (5'6" @ 138 libs) and she said my dose (2000 mg twice a day) sounded about right. I also talked to the nurse at my MO's office yesterday and she said they have nobody on the 7 day on 7 day off schedule. It does sound like it would be more tolerable. I am going to ask my MO at my next appointment. So far only on day 2. Feeling some nausea. I haven't had much of an appetite for a while so hardest for me is figuring a good schedule around when I eat what would be a meal.
theresa45 so encouraging to read that you got significant shrinkage! Blessings to all.
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Theresa45-Most oncs don't suggest that you swim at the gym since the chlorine is not good for the hands and feet. My treadmill is sitting unused now, too.
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Denny123 - Thanks for the input on swimming. My feet are so dry as it is. I have a friend with a pool at her home that uses the salt chlorine technique, so I wonder if that might be less drying than a commercial pool. I will cautiously give it a try when the weather warms up and report back. I have cautiously tried hiking, but my feet do not tolerate it well at all. Cycling is better, particularly if I don't stand on the bike as much. I spend way more time sitting these days than I'd like, but I'm very grateful that I feel well and that it is working... at least for the moment. I hope that it will work for us all for a long time!!!
Dorimak - 2000mg twice a day probably does fall within the dosing range that was tested in the original trial. However, it seems that in practice, oncologists have found that Xeloda can be as effective at a lower dose. Your oncologist may want to start you at the higher dose and then reduce the dosage if your side effects are too much. My understanding is that Xeloda is transformed into 5-FU through a multi-step process in our bodies. So, it's not just surface area, but also how well our body transforms Xeloda into 5-FU.
Thanks and best wishes to all! Theresa
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theresa45, you're talking beyond my level of competence when you talk about 5-FU
but good to know that Xeloda couldbe just as effective at a lower dose. The biggest issue I've had with the other targeted treatments (IBRANCE, Afinitor) was they knocked out my white blood counts and I'd often have to take breaks. Seems like that's also a side effect on this med also. The possible hand foot syndrome has me the most upset because of the restrictions. I love to walk for exercise and run on the treadmill. Also, love the summer running around in fllip flops with my toenails pimped out. Sounds like we're not supposed to even sit by a window when there's sunlight streaming in. 0
