All about Xeloda
Comments
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Divine---ask your chemo center to submit a coupon to the company. Although it may differ according to states, at least no patients at my very large chemo center have to pay for than a few $$ for it.
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Devine- I got my meds yesterday and started it last night and then took second dose this morning. Felt fatigue and maybe a little GI , but otherwise ok.
seems like a crazy co-pay! It’s a generic drug.0 -
Nicole it sounds like m in a similar boat as you. My onc just called and said my tumor markers are up and they are not sure medication is working. So sending for a ct scan. Were yourtumor markers up? Mine went from 80 when I ended verzenio. To 173 and now 240. Hoping this not the case this would be my second failed medication since being diagnosed in June. It seems like I had less progression when I was just on the normal tamoxifin. Any suggestions of what can ask onc to try next? Liver and bone mets.
Thanks
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Jizn,my tumor markers do not move...they have been "normal" since day 1 so I cannot go by that...and to be honest most times I am glad they don't bc I would panicked watching them all the time.
We are going to Doxil or Abraxane next....my MO would prefer Abraxane...but admitted I would be on that until it stopped working...thats IV chemo once a week for 3 weeks 1 week off...you lose your hair etc... the Doxil is once a month you don't generally lose hair.....
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One part of the Xeloda routine is to take the meds with food. Breakfast is tough for me, it’s hard to eat much in the morning, How much do I need to eat, or how little can I get away with eating?
Taking Xeloda twice a day, for me the timing would be 8 am and 8 pm.
So in the evenings, the pharmacist says, take Xeloda with dinner. We have dinner around 5. So how much should I eat at 8?0 -
Mrs. M,
I get up around 5 but my stomach doesn't really wake up until around 9am. We eat dinner at 6pm.
Between 6:30 and 7am, I have a vanilla Orgain drink, so I don't have to choke down food that early! That has worked well for me. I don't think you need a full stomach, just something to help protect it from me medicine. A couple of times a week I have a small amount of food, whatever's around the house ; toast, banana, leftovers, breakfast bar.
Everyone approaches this differently, but the above works for me!
Best,
Katty
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Divine, I don't know the answers about eating and timing. I've been on Xeloda (4 500mg tablets/2000mg/da 7/7) for 13 months and have been stable since starting. I typically don't have nausea problems and only once had to take the pills without eating. I didn't experience a problem. I believe that efficacy is deemed to be better with food, but I'm no expert in this area.
I'm going to PM you with a link to a document I created for myself when I started Xeloda. I read through many pages of the Xeloda string and cut and pasted suggestions I thought would be helpful. It has been my observation that we all react differently and some management solutions for HNF work better/worse for different individuals.
An update on my glove experiment: I have been wearing nitrile exam gloves from Costco on a 24/7 basis for about a week now. As they wear out/stretch out, I replace them. I put a bit of Aquaphor on my palms before donning the gloves. In the past, I was wearing the gloves only at bedtime and slathering my palms with Aquaphor. Now I'm using only an amount about equal to the toothpaste you'd use on a toothbrush.
The results for me personally have been truly remarkable. My hands (gloveless), which in the past were becoming very red/purple and markedly painful by mid-afternoon, now feel perfectly fine/normal throughout the day and night. I'm a gardener and very busy cleaning up my garden right now (what else do we have to do with the threat of this virus keeping us self-quarantined). I pull my gardening gloves on over my nitrile gloves. It has all worked wonderfully well.
Further, the gel-lined footie things from Amazon have been wonderful for me. I wear them every night (and yes, they are a little hot and make your feet sweat/moist, but I believe that it is that moisture which is working). I strongly recommend them if you haven't tried them.
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DivineMrsM,
I have been on Xeloda since September 19 and have few and fairly mild side effects.
I usually take Xeloda with breakfast at 8 am and at dinner 6 pm (yes that is only 10 hours apart, but from a biological perspective it makes little difference). But to minimise gastrointestinal side effects, it is best to take Xeloda within 30 minutes of eating.
There have been some occasions, where I simply took them while eating a banana without any problems.
I wish for you, that Xeloda is effective and with few side effects.
Take care,
Meja
P.S. I appreciate your many posts, - sharing your insights on how it is to live with mbc :-)
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Divine..we are supposed to take the pills a half hour after a high protein meal or snack for best efficacy.
Even some yogurt before the pills would be good. I have mine at 8 pm with a protein snack.
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Joyner, thanks so much for the PM and the additional information on gloves and footies. Very useful!
Meja, it's good to know something like a banana can suffice for breakfast. I can manage that or a small container of yogurt like Denny suggests. And I'm realizing I have every other week off from the routine and I think that'll help.
Thanks, everyone, for the great tips!
And thanks, Meja for the nice comment about my posts.
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hi all. Just finished my first 14 days on Friday. I am experiencing what I assume are side effects and wondering if anyone has experience or advice. I admittedly haven’t had a chance to do a bunch of my own research or search prior posts yet (I’ve got two little ones at home, school cancelled and self quarantined due to coronavirus).
when do side effects improve in the week off? I am surprised things aren’t starting to feel better after 2 days off.My lips hurt and have a sore open wound right at where lips turn to gums. My gums also hurt and I feel like I have some mouth sores. I think perhaps all my mucous membranes are not happy.
I also now have a splotchy red face?! That is slightly itchy and peeling a bit. Is this normal?
I’ve also had some nausea and hfs, which I was expecting.
Thanks in advanc
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Hi,
I have finished the third round of Xeloda (2 weeks one, a week off) side effects has been easy so far, mainly some nausea on the first round. I use working hands cream twice or three times a day and my hands and feet are doing pretty good, just a bit sore, but very light. My blood tests have been doing good as well, reduce tm's twice, hopefully next tuesday they will continue to go down. Divine, regarding your question, I eat a toast or a slice of bread for the morning pills and haven;t had any problems with that. In the evning I have a full dinner
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Nicole are you staying with xeloda for now since you are not sure you progressed on it? My oncologist said if liver shows no progression after scan I will stay on xeloda and ignore tumor markers. But if it has progressed intravenous chemo. Which I am not looking forward to. But I guess we do what we have to.
Thank you for the info.
Julie
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Hi Thrivingmama,
I can comment on the splotchy red face. At the beginning I also had some red, scaly, itchy, spots in the face, together with hyperpigmentation, even though I hadn't been in the sun. After 2-3 months they cleared up. I hope yours getter better soon, too.
Take care,
Meja
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Do any of you take supplements (vitamins, probiotics, etc.) and if so, what are they?
Currently, I take Vitamin D. I was taking calcium, but while on Verzenio, my red blood cell count tanked, I had to get a pint of blood and I read that calcium supplements work against the red blood cell count, so I took a break from it. A while ago, I took a multivitamin for several months but stopped because there was some concern it gave fuel to the cancer. When I was on Arimidex for 7+ years, I took curcurmin (turmeric complex). I stopped when I went on Ibrance as there is conflicting reports of interference between the two.
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Thriving...the SE's can occur at any time on the week off. Ask your onc for Magic Mouthwash for the mouth sores....watch your diet.
If the SE's get too bad, call your onc.
Divine...I never use any alternative supplements since none of them have been proven to be beneficial. And, in fact, they can keep the chemo from working well. I am cleared to use Centrum Silver (except around the time of my Herceptin IV, since it has iron). Also Vit D, C, Biotin, B6, Potassum, Calcium. No high doses of any of them, especially the Vit C IV. Check with your onc about your blood levels to see what you really need...and also your pharmacist who distributes your Xeloda about nutritional supplements.
It amazes me that women take the alternatives and then wonder why their chemo isn't working. Chemos are proven; alternatives are NOT.
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Denny, I definitely agree, chemo is proven; I'm a big believer in traditional medicine. And you are one to know, living with this disease for so many years. So it's interesting to hear you aren't big on the supplements. There are believers in supplements who take some, and those who take many, and it is, of course, a personal choice. I understand the need to try to control some aspects of mbc or hoping to help with treatment, boost its effects, etc.
It's recommended with the zometa to take vitamin D and calcium which is why I did. I agree also with your recommendation of no high doses of anything especially so supplements don't interfere with chemo or other treatment. I could never go overboard because if and when things went haywire, my concern would be that I made things worse instead of better.
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Divine...Vit D and calcium are fine. I often wonder why women would blindly follow one guy who wrote a book to make money, versus 1,000's of cancer research scientists.
I am very happy to read that you will take your treatment seriously. I have never heard proof that an alternative tx can boost the effect of chemo. But rather, they will keep the chemo from working effectively. I have counseled so many women through the years who used alternatives and I honestly don't know of any who had success.
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Jjzn...yes I am staying with it until April 13th....I scan then...
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For what it's worth, my recently retired onc, who was head of a large cancer institute, said in response to my own questions about supplements, "Take them if it makes you feel better, but I've never seen any evidence that supplements make a difference in cancer treatment".
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Divine...I take (or did take, have to have my ALT AST Billi checked 1 more time before resuming).... I would not recommend a multi vitamin because if it has Folic Acid not good with Xeloda. I also would not recommend ORAL Vitamin C...with Ibrance or Taxane chemo. Those drugs (chemo's ) purpose is to cause a PRO OXATIVE State in order to kill the cancer....so if you take ANTI Oxidants with them it prevents the chemo from doing it's job.
People that just say "Don't take any supplements with any chemo" have not done the research...because I have spoken to 3 Doctors (2 of them oncologists and 1 internist) that all practice standard of care but admit that supplements are ok with CERTAIN CHEMO...for example.... XELODA and DOXIL are NOT taxane chemos and do NOT kill the cancer by creating a PRO OXATIVE enviornment...they are fluorouracil chemo that work by damaging the RNA or DNA that tells the cell how to copy itself in division. If the cells are unable to divide, they die. The faster the cells are dividing, the more likely it is that chemotherapy will kill the cells, causing the tumor to shrink.
So my opinion...as far as Vitamin C I would only do IVC that is over 50 grams....and check with your oncologist..even my oncologist who treats with Standard of Care didn't have a problem with me doing this but she personally doesn't do it. I chose not to for other reasons. However...I am taking Astaxanthin right now...which is amazing and actually helps Fluorouracil work more effectively...I take a very high quality liquid form of this..not what you buy on amazon. I just started it 2 weeks ago. I will also be going back on either Low Dose Naltrexone OR MSM for inflammation. I have always(even before cancer) taken VitD3 and Magnesium and still do. I had to cut out:
Baby aspirin
Melatonin
Low Dose Naltrexone.
MSM
for now because coupled with the Xeloda my liver AST and ALT were high but I will add only 1 back in ...after Thursday..either the MSM or LDN...the Astaxanthin is processed in the small intestine and does not interfere with liver...but most everything else does.
Nicole
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On the other hand, my specialty pharmacist told me that the Folic Acid in my Centrum Silver is okay. I just can't take any extra Folic.
I have not found any proof that IV Vit C is safe.
I don't go by 3 doctors....I go by millions.
So I feel that the fact that I have survived for 18 years on chemo without taking any alternative junk, proves that (in my case) I am doing things right.
It is up to the individual.
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Denny...you have HER2+ BC ...you were receptive to Herceptin this is why you got so many years.....you CANNOT compare that to someone that is HER2- you cannot. Not to mention that everyones GRADE of cancer is different you could be slow growing GRADE 1 or 2...and someone else Grade 3. . Also I personally know people right now NED that did IV VIT C...so there ya go. You cannot just tell people its a fact because you have not seen any evidence or that it is not safe if you know for a fact it is not safe please post the studies showing that also have a go on Facebook into the groups of people that are doing it and are NED...besides people like Jane McLelland who wrote a best selling book you are also assuming (I think) that people like me and others are saying VIT IVC alone cured them...I am not saying that...but its a fact IV C kills cancer cells. NOTHING works 100% for everyone not even CHEMO not even HERCEPTIN...
Also if you want research Ill make it easy for you google...Dr. Lisanti in Italy....tons of studies on IVC and cancer cells being killed.
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Nicole. I am Her2-
I know personally ladies that I counseled with Reach to Recovery who took large doses of alternatives. They are no longer here.
You say that Xeloda isn't working for you. Ever wonder why?
My goal for 17 years has always been to save lives.
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Denny your profile on here says you were HER2+ is that a mistake ...no you were...you are NOW her2- correct? Hence why herceptin worked so well for you for so long.
Re-read my post I never said Xeloda is NOT working I said it worked on my Bone Mets but they are not sure about my liver mets...and no I don't wonder if it's Vitamin IV C because I don't take that- I even said I don't in my post I guess you didn't read that.
So No that is NOT why Xeloda is NOT working IF its not working at all.
Again...the people you know that took large does of "alternatives" what alternatives??? Also I will re-iterate not everything works for everyone...hence why Ibrance works for some and not for others and Herceptin works for some and not for others...and IVC works with some chemo and not others... if all those people you knew all took IVC and are not here that doesn't mean its because of the alternatives..it could be because there cancer was too advanced for anything to help or they took alternatives with certain chemo like I mentioned above that you are not suppose to take certain drugs with others or were they ONLY taking alternatives and not chemo/immunotherapy if so then yea that wouldn't work in my opinion. Chemo kills cancer cells it doesn't kill cancer stem cells which is why we have recurrences all oncologists know this they admit this. That is where alternatives can come in if a person chooses and it can compliment the chemo /immunotherapy...not always but yes it can.
Also did you look up Dr. Lisanti's study in Italy that show IVC killing cancer cells?? They also have done this at Memorial Slone Kettering or MD Anderson search and you will find the study...that doesn't mean people should NOT get chemo. I never said that and I wouldn't say that.
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I welcome the differing opinions on supplements and appreciate everyone’s insight!
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There is a special thread on this site about alternatives.
Several years ago, the admin instructed all suggestions about alternatives to be posted only to that site.
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If someone is on Xeloda like MDivine and wants to ask questions specifically to Xeloda users it would and should be done here..which is what she did and why I am assuming the Mods didn't ask her or the reply poster (me) to post it elsewhere. No one here seems to mind that she asked her question and that I responded to her...it's really not a big deal.
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Exactly. I gave my opinion and you gave yours. Forgive me, but I am horrified that anyone would take dog ringworm medication as a "cure".
Maybe some people would have no problem with that. But, seriously.....
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Denny that drug in the human form which is almost identical is being tested in Memorial Slone Kettering right now...and there are MANY success stories that people have taken the "dog" version and are in remission. Do some research before you just assume its crazy...its safe and working for many people.
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