All about Xeloda
Comments
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Does anyone currently take a daily dose of Xeloda that is less than 2000 mg? When I started X a year and a half ago, I was prescribed 3000 mg a day, three pills in morning, three at night, a week on/a week off. About 10 months later the hand and foot syndrome got so terrible the onc reduced the dose to 2000 mg, two pills in morning/two at night, same weekly schedule.
Well, now almost a year later, the hfs is starting to flare. I have an onc appt next month and am wondering how the onc will choose to address it. Would another dose reduction still be strong enough medicine? Or will I have to go to another treatment? Since X is working and causes minimal disruption to my daily life, I want to stay on it as long as possible. Plus right before Christmas I want to avoid upheaval in a switch if I can, at least wait till the beginning of the new year.
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Divine,
I am currently on xeloda and neratinib. I had a really hard time with even a low dose of xeloda (500 Am, 500 PM, 7 days on and 7 days off). It made me terribly nauseous. The breast center pharmacist suggested messing with dosage, bc xeloda is available also I 150 mg tabs (not just the 500). So right now, I am taking 450 mg in the AM and 450 mg in the PM, 7 days on and 7 days off. I really don't know if it's doing anything -- just had labs pulled yesterday and I think that things looked relatively stable, so it's not clearing anything out. I have an MO appointment next week, so we'll discuss then I'm sure. But I don't want to go up in dosage because it makes me feel so awful. As far as hands and feet go, I have a little bit of roughness on the palms of my hands, and some very slight sloughing off of skin on my heels (very slight) but that's it.
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BevJen, thanks for your post. I had not heard of neratinib before. Is it very pricey? It sounds like I may have a little wiggle room in dosage to stay on Xeloda at least until January. I hope the onc sees it that way.
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Divine, I’m very new to Xeloda, but I’m just curious if you’ve upped your folic acid intake recently. I try to stay away from foods with it as much as possible. I have some peeling going on with my hands right now but nothing painful. I’m on 3000 mg a day 7/7. I’ve only been on it two months, though, so I haven’t had major issues as of yet. I hope you can reduce and not get off if it’s possible.
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Divine,
Neratinib is very pricey, just like all of these drugs. It's actually being tested for a bunch of things, including my situation, which is that I have developed two Erbb2 mutations -- so I show up as Her2-, but I have these two mutations related to Her2. You can read more about it if you look up Nerlynx, which is its trade name, or look up the Summit basket trial.
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Divine-are you avoiding foods high in folic acid?
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Has anyone had high blood sugar readings while using xeloda? I haven't seen this problem before. I am on a VERY low dosage of xeloda, 7 days on/7 days off, and my blood sugar is going a little wonky on my labs. I am also on neratinib, and it could be that, but thought I'd check here first.
Thanks.
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I had no emotional effects from Xeloda. Bev, I had no blood sugar trouble from xeloda or neratinib. My diet was pretty darn good. (Unlike now, post -surgery, when I have to eat white bread and no veggies.)
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BevJen, I have not had blood sugar problems either. I’ve only been on Xeloda a little over a month, though
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I just had a HGBa1c and it is 4.4 (super low). fasting sugars on PET days are about 85. did go up a bit on Afinitor, but, not Xeloda.
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Hmmm. My diet has been SH** on xeloda because I don't think it agrees with my body. Maybe one (or two) milkshakes too many???
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BevJen- LOL. Well, milkshakes don't have a lot of folic acid. They are one of my weaknesses.
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I decided I like to eat foods with folic acid, so I quit taking my multivitamin that had folic acid included. Also, I look at juices prepared food Etc packaging to find the more natural brands that do not include folate.
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I sadly gave up my morning orange juice and now drink grape juice. I eat foods that are moderately high in folic since it is impossible to live on meat, potatoes and apples.
And so far, I don't have burning feet for a few days on my off-week. We will see....
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Denny,
Interesting. Is OJ high in folate? I have not given that up, but perhaps I should look at that list. There are so few things that I've been able to stomach while on xeloda that I haven't even consulted that list. But I'm on such a low dose that I haven't had trouble with hand/foot issues.
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Something to keep in mind is that there is a difference between folate and folic acid. Folate occurs naturally in food (leafy greens, beans, etc.), while folic acid is a supplement that is added to some foods (such as white bread) or vitamin pills. Like nopink, I want to eat foods that naturally have folate, while avoiding food that has folic acid added to it. I've said this before, I would rather reduce the xeloda dose a little and eat a variety of healthy foods.
Here is some info from the Food For Breast Cancer web site:
While dietary folate is associated with reduced risk of breast cancer and its recurrence, folic acid (the synthetic form of folate found in supplements and fortified foods) has been shown to reduce natural killer cell cytotoxicity and to promote existing tumor growth in mouse models of breast cancer.
U.S. food manufacturers are required to add folic acid to white flour, enriched pasta, and cornmeal. This is to ensure that pregnant women receive enough of this vitamin to reduce the risk of neural tube defects in their babies. Folate has important roles in DNA synthesis and repair. Folate deficiency is thought to contribute to increased risk of cancer through increased DNA strand breaks, impaired DNA repair, and increased mutagenesis. Dietary folate intake is associated with reduced risk of breast cancer recurrence, especially among women with estrogen receptor negative (ER-) tumors.
However, folic acid has been shown to reduce the expression of beneficial tumor suppressor genes and increase expression of HER2 in breast cancer cells. Folic acid supplementation has also been suspected of promoting the progression of existing breast tumors in some women. Now a new study has demonstrated how folic acid can increase the growth of existing tumors.
Population studies have reported inconsistent results with respect to folate and breast cancer. These contradictory results suggest that different subgroups may experience varying outcomes from folic acid supplementation, and, given folate's role in DNA synthesis and repair, that these differences may have a genetic basis. There is some evidence for this.
We suggest that breast cancer patients and survivors include foods in their diets that incorporate folate rather than taking folic acid.
https://foodforbreastcancer.com/tags/folate
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Very interesting Shetland! Thanks for posting that information!
BevJen-on my Facebook Xeloda groups, some ladies get worse diarrhea or vomiting from folic acid instead of HFS. One lady loved her lentil casserole and couldn't figure out why it now made her very sick.
I keep reading about Folic Acid / Folate and recently read about OJ being a good source of it. Darn. I am also eliminating bananas.
I can still have a healthy diet while watching what I eat, and am thrilled that I haven't had the severe foot problems since April!
My fav way of making veggies is to roast them. So now I eliminate broccoli and instead, I roast carrots, onions, peppers, cauliflower, potatoes or sweet potatoes. So I still get a good variety and add chicken breasts, fish or beef for a good meal. I live alone, so I don't have to worry about feeding anyone else!
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Trying to get this straight. Eating foods that contain folate is a good thing and can reduce bc recurrence.
Folic acid, the synthetic form of folate, can promote cancer growth.
Is that what the general consensus is?
Now, when it comes to taking Xeloda, is it okay to get folate that occurs naturally in food? Or should intake be reduced in the case of red, burning side effects on hands and feet? And should folic acid be avoided?
I'm just a little confused. I was adding lemon to my water and have since stopped when the hfs flared recently. I feel like there's mild improvement, I'm also being very good about not picking at the dry skin to avoid causing raw spots on my hands.
I got a tube of “Gloves in a Bottle" which I used years ago. It's supposed to help protect hands even after several washings. It's made my hands so smooth things slip more often from my fingers. Just started using it but wanted to give it a try now that the furnace is running and the inside air is so dry.
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Divine, yes, it seems that there are scientific studies that suggest that. If you look at the foodforbreastcancer web site you can read them, along with the comments of the person who made the web site. (I do believe that in general, nutrients from food are usually safer and healthier than supplements, which may have unintended consequences. There are probably synergies in food that are lost when one substance is isolated and made into a supplement.)
On June 9, 2016 Husband11 posted a journal article on this thread, and there was discussion, about 5-FU toxicity being worse in the USA than in Europe, where there is not so much folic acid fortification of food. (Xeloda is an oral pro-drug of 5-FU.)
https://community.breastcancer.org/forum/8/topics/772113?page=193#post_4732621
Ultimately, each person on xeloda needs to figure out, with their oncologist, what makes sense for them. It seems to me that one can reduce folate or folic acid intake, or reduce the xeloda dose. Given that folate appears to promote health, I would not want to limit it too much. But I would not take a folic acid supplement or eat a lot of folic acid-fortified foods.
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Thanks for clarifications. Is folic acid normally listed on labels? I found some juices in jars (shelf in Whole Foods, not in frig section) that listed folate, but not folic acid. What type flour isn't fortified with folic acid?
I read that folic acid is sometimes listed as Vitamin B9 (it really isn't a B vit).
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Ladies, thanks for the great discussion on folate/folic acid. I'm going to start paying attention.
Divine, thanks as well for the Gloves in a Bottle recommendation. I have a question, which you may or may not be able to answer:
On Amazon, there are two versions: loves in a Bottle Shielding Lotion
Gloves In A Bottle Shielding Lotion for Dry Skin, 8 Ounce $17.95 ($2.24/fl oz)
andGloves In A Bottle Shielding Lotion 3.4oz/100ml Tube, Second Skin for Hands and Body $14.30 ($4.31/fl oz)This latter has is in a tube vs the bottle of the first, and the name on the tube is Gloves in a Bottle Hand Shielding Lotion. It is obviously significantly more expensive. Does anyone know if the formulation is different? Why is nothing ever simple?0 -
I don't know Gloves in a Bottle. But I do know about Bag Balm lotion in a tube. Don't bother. It is just lotion, not the gooey Bag Balm that is healing.
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In my research, when I looked up foods that are high in folate or folic acid...they are the same foods. If you google to find the foods highest in folate, they then call it folic acid.
Since it is impossible to avoid all folic acid, I have found that the foods that I eat that are moderate and not high, still provide plenty of folic acid. And my feet are no longer terrible.
I seldom look at labels, since I now know what to avoid. When in doubt, I google that food...other than consulting this site...FolicAcidNow.Net.
And I do know people who hate vegetables but are still healthy. My main culprits are spinach and broccoli, which I ate very often....when my feet were very bad.
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Joyner, it is the same product just packaged differently. I once got a bottle of it for dh. I prefer the tube since I can toss it in my purse if needed but the price discrepancy between a tube and bottle is ridiculous. The product is overpriced but I am willing to pay to see if it helps especially thru the winter.
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Hi NKB, I noticed you were on Afinator. I am curious how you did on it. I took it for the past 3 months and had internal bleeding in my stomach. Unfortunately I was unaware of this until I was exhausted walking from one room to another. While on vacation, I went to the hospital to see if I had pneumonia, and they checked my blood. My hemoglobin was 6.9 which is dangerously low. I had to have a transfusion of 2 pints of blood.
I will see my onc tomorrow to go over my MRI Mammogram and Bone Scan. She wrote me a note because my tumor markers went up and said, "I think we should change course, and specifically I think that we should go to an oral chemotherapy drug called Xeloda". So far I have had two years of no pain and 6 bone mets that are inactive. Compared to most people, I have run through Ibrance, Verzenio, and now Afinator.
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Woodlands, I would think that Xeloda would be a less toxic drug than Afinitor for you. For me, Xeloda was the next line of treatment after Ibrance/Faslodex.with good results lasted for about 15 months (went NED), although I don't have bone mets. Just make sure you get a low enough dose. I don't know of many people who stayed on the initial high dose. They are saying you don't have to go with the original dosage they came up with. It will depend on your MO's experience though as to how he wants to start.
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Woodlands, I'm sorry about the bleeding. I appreciated the warning you gave at the meeting on Monday. I have been on Xeloda for a few months now. My tumor markers have dropped for the first time in a long time. I'm on 3,000 mgs a day, 1500 in the morning and 1500 in the evening. I'm tolerating it fairly well. I slather my feet in moisturizer at night before I go to bed. My hands are peeling, but no cracking. I do wash them a lot, so I moisturize them a little more often. Watch your folic acid intake if you go on. That seems to be the culprit with hand and foot syndrome. Hugs
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Woodlands---good luck! We are here for you.
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Woodlands- I am sorry to hear about your bleeding issue- I hope it had nothing to do with Afinitor- I did really well on Afinitor and it worked about 10 months - my hair got luscious, leg cramps went away and neuropathy was better! no mouth sores, no ANC issues like Ibrance- I was really sad when I progressed on it.
I have done well on Xeloda- my TMs have gone lower than with any other meds- they are creeping up now, so may have progression, but, I feel good on it also. I do think that there is a wide range re how effective drugs are for an individual person and also the side effects they may have- part of it is the dose your doctor uses and the schedule. when I started it I was quite ill (severe anemia- blood transfusions every few days for 2 months) so they didn't start with as high of a dose as I have seen here- after 2-3 months I had foot pain and also my ANC could not recover from 14 days of treatment. I was changed to 2000 mg day and 7/7 schedule and have had no further ANC or foot issues. Some people have had a good long run on Xeloda and I hope that you do also.
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The internal bleeding in my stomach was due to Afinator. My mom and her father both had bleeding ulcers, so maybe I have a thinner lining in my stomach than most people. My onc had never had a patient who bled due to Afinator before. Once I stopped taking it, the bleeding stopped. The endoscopy confirmed both the bleeding and that it had stopped. I am building back my hemoglobin levels.
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