All about Xeloda
Comments
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Too tired to attach source info, will do so later.
THIS IS IMPORTANT!!!
Green tea is not for ER+. It has phytoestrogen..... phytoestrogen is a naturally-occurring plant nutrient that exerts an estrogen-like action on the body.
DO NOT TAKE ANY ANTIOXIDANTS WHILE ON XELODA!!! ANTIOXIDANTS WILL BLOCK XELODA FROM WORKING. Xeloda starves cancer cells of the oxygen needed to survive and spread. Antioxidants feed all cells, cancerous or not, with extra oxygen.
Some of you might have been counseled on this - most of us haven't.
I have researched this heavily. I asked questions and I have been sternly warned by my Oncology Team and Oncology Pharmacist to avoid taking any antioxidant supplements, including fish and krill oil. My hospital is a highly rated NCI Cancer Center.
I continue to see gross misinformation posted here that is endangering the lives of those who might follow it. Just because someone has been on such and such a medication for x amount of years, it does not make that person an expert.
Research from legitimate sources, ask questions..... if you are suffering from negative SEs tell your MO immediately. I almost quit Xeloda after the first cycle. I was so sick and in unbearable pain. My dose was adjusted, some new meds were added and now everything is fine.
Xeloda comes with a price? Yes it does. It's called a co-pay.
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Lita, I have not lost any nails, but they are not completely attached to the nail bed. Just my left pinky and my big toes just started. I keep a needle and syringe with Braggs ACV w/the mother and put some under the nail. Then I put some Vicks Vapor Rub on them and under the nail if I can. All mine grew back, but they are starting again. It takes awhile, couple months, at least for me it did. I did it often too. You can soak your fingers in the vinegar too. Toes, not so much!
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I wonder if the hair is caused by coming off Ibrance, Afinitor, letrozole, or Faslodex, rather than being on Xeloda. Because it happened before after coming off Taxol. Fortunately it is kind of subtle and not coarse, but still I'd rather it go away.
Will you X buddies tell me what manufacturer makes your pills? I want to know if I can choose a brand with less lactose. It is the first ingredient on my pills, and I am lactose-intolerant. Online I see about seven manufacturers, but it looks like they might not be available in the US; I can't quite figure it out.
I thought my feet would be less red on my week off (cycle three) but they seem to be red most of the time now. Since X has a short half-life, this must be cumulative damage.
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It is cumulative pony. I took a break from X and had that hair on my face at the jawline, and very long hairs on my arms. Very white fuzzy kind of hair. When I went back on X, it all went away, except for the hair on my arms. It was very brittle and if I pulled on it, it would just break off. I feel best at the end of my week off and first week back on. My MFR is Null.
I'm going to change my dosing, onc is ok with it. Going to try 1 pill, 3x a day with no break.
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What is MFR, goldie? Strange, I had that tiny white fuzzy hair on my arms until I started X, and now it seems to be changing to normal arm hair. And the jawline hair is new. So we appear to be opposite. I may just wait and see what happens in the next couple months.
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MFR is manufacterer
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Oh, how funny. I thought that "Null" meant you had no (zip, zilch, nada) MFR side effect, whatever that was!
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OMG, talk about chemo brain! On my bottle it says MFR Null. I think it means like null and void? That they are not showing the manufacture!
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So for what it's worth... I do both 2 cups of matcha green tea a day, along with several antioxidant supplements. I've only been on X for 5 cycles, but so far so good -- thankfully just had excellent, stable scans, and TMs have dropped >60%. I don't normally drink my green tea or take my supplements at the same time I do my X pills, but it's happened on occasion, and I don't stress over it. I understand the logic about antioxidants possibly protecting bad cells as well as good ones, but not sure we're all the same. I truly believe matcha and my supplements help me stay healthier, and can't imagine giving them up.
Shepkitty, you say you have "researched this heavily." Can you share some links? I will also do some digging, but so far nothing I've read has convinced me to give these up. Deanna
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My manufacturer is MYLAN.
Thanks, Shep, another endorsement to AVOID Green Tea! As you said, it's VERY important NOT to take green tea or green tea supplements or fish oil during Xeloda. For clarity, should we NOT take it during our OFF weeks, too? I know we shouldn't take it while on a cycle. I realize you have researched this more than I have. So we appreciate your insightful input. I know that Xeloda continues killing cells even during the off week.
Also with this in mind, I'm assuming women on AI's shouldn't take it either because it would negate the purpose of the estrogen blockers. So infuriating that more MO's don't TELL us these things.
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http://blockmd.com/2014/04/30/matcha-tea-and-chemo...
https://www.mskcc.org/cancer-care/integrative-medi...
If anyone has research links with different conclusions, I'd really appreciate seeing them.
I don't think it's a big deal to give up green tea if it concerns you, but I've never heard of a concern about it with meds that blocks estrogen (A/I), so again research data rather than the opinion of an onc would be helpful.
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Here's a study done with mice in 2009 that said green tea is problematic with the meds for two other types of cancer:
https://www.sciencedaily.com/releases/2009/02/0902...
And here's and one from 1998 saying it actually enhanced doxorubicin's antitumor activity -- again in mice:
https://www.ncbi.nlm.nih.gov/pubmed/9516964
And another list of possible interactions, including estrogen (not anti estrogen) meds, because it weakens them...
http://www.rxlist.com/green_tea-page3/supplements....
But I didn't have my matcha today! Still trying to sort this out...
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Hey dlb823,
Sharing research, asking questions and sharing our findings; now we're having fun
I enjoy learning and the exchange of fact based knowledge. This cancer stuff is so hard to sort. Although all of us are Stage IV, we each have different cancers, genetics, medications and other health issues. There is no "one size fits all" but together we can work to find the mix that works for each of us individually.Excited for Shetland Pony to jump in too!
My oncology team is comprised of my MO, Onc Neurologists, ROs, Orthopedic Oncs, an Onc Brain Surgeon ( I know I'm forgetting some) - all are heavily involved in research as well as patient care. I am truly blessed to have them. My life has been saved a few times already by my team. I share all this to explain why I trust my docs so much. You don't know these people - I fully understand and appreciate your wanting of tangible evidence. The more we can learn and understand, the better an advocate we can become for ourselves.
Excellent links you shared about the green tea! Very frustrating the contridictions in some of the studies.
From the RXList link you provided:
Special Precautions & Warnings:
Pregnancy and breast-feeding: If you are pregnant or breast-feeding, green tea in small amounts - about 2 cups per day - is POSSIBLY SAFE. This amount of green tea provides about 200 mg of caffeine. However, drinking more than 2 cups of green tea per day is POSSIBLY UNSAFE. Consuming more than 2 cups of green tea daily has been linked to an increased risk of miscarriage and other negative effects. Also, caffeine passes into breast milk and can affect a nursing infant. Don't drink an excessive amount of green tea if you are pregnant or breast-feeding.
"Tired blood" (anemia): Drinking green tea may make anemia worse.
Anxiety disorders: The caffeine in green tea might make anxiety worse.
Bleeding disorders: Caffeine in green tea might increase the risk of bleeding. Don't drink green tea if you have a bleeding disorder.
Heart conditions: Caffeine in green tea might cause irregular heartbeat.
Diabetes: Caffeine in green tea might affect blood sugar control. If you drink green tea and have diabetes, monitor your blood sugar carefully.
Diarrhea. Green tea contains caffeine. The caffeine in green tea, especially when taken in large amounts, can worsen diarrhea.
Irritable bowel syndrome (IBS): Green tea contains caffeine. The caffeine in green tea, especially when taken in large amounts, can worsen diarrhea and might worsen symptoms of IBS.
Glaucoma: Drinking green tea increases pressure inside the eye. The increase occurs within 30 minutes and lasts for at least 90 minutes.
High blood pressure: The caffeine in green tea might increase blood pressure in people with high blood pressure. However, this does not seem to occur in people who regularly drink green tea or other products that contain caffeine.
Liver disease: Green tea extract supplements have been linked to several cases of liver damage. Green tea extracts might make liver disease worse.
Weak bones (osteoporosis): Drinking green tea can increase the amount of calcium that is flushed out in the urine. Caffeine should be limited to less than 300 mg per day (approximately 2-3 cups of green tea). It is possible to make up for some calcium loss caused by caffeine by taking calcium supplements.
The page with drug interactions is quite surprising. Many common meds taken for other health concerns are affected by green tea.
The concern about the estrogen is because the plant leaves used in the tea produce their own estrogen, thus interfering with ER+ treatments.
BBL with my antioxidant links. Got side tracked by the tea - and I type slow. Stupid neuropathy, grrr.......
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I have no definite opinion on the green tea question at this point, other than it is worth looking into. I read all the sources Deanna linked. (Thank you!)
As far as green tea and breast cancer, the articles in general praise green tea for cancer prevention properties. The Block article says "polyphenols, such as EGCG, tend to become pro-oxidants when they are put into cancer cells. They then cause apoptosis, or cancer cell suicide..." However, the MSKCC site says "another finding suggests that consumption may increase the risk of breast cancer in postmenopausal women (62)" and it referenced the paper below which looked at both black and green tea:
Cancer Epidemiol. 2016 Feb;40:73-8. doi: 10.1016/j.canep.2015.11.013. Epub 2015 Dec 8.
Evaluation of breast cancer risk associated with tea consumption by menopausal and estrogen receptor status among Chinese women in Hong Kong.
"...Regular tea drinking was significantly associated with a lower risk for breast cancer in pre-menopausal women (OR=0.62, 95%CI: 0.40-0.97) but an increased risk in post-menopausal women (OR=1.40, 95%CI: 1.00-1.96). The positive association among postmenopausal women was strongest among ER-negative green tea drinkers (OR=2.99, 95% CI: 1.26-7.11)..."I'm sure some doctors would say that this was just one small study.
As far as green tea or ECGC and Xeloda/capecitabine in particular, I see interactions listed for various drugs including some chemo drugs, some enhanced and some hindered, but nothing about capecitabine. However, Husband11 noted on this thread in June the following article:
Inhibitory Effects of Eight Green Tea Catechins on Cytochrome P450 1A2, 2C9, 2D6, and 3A4 Activities.
J Pharm Pharm Sci. 2016; 19(2):188-97 (ISSN: 1482-1826)"The ingestion of beverages containing large amounts of green tea catechins together with drugs that are metabolized by CYP1A2, CYP2C9, and CYP3A4 should be avoided." I understand that CYP 2C9 is the liver enzyme involved in capecitabine metabolism.
Some of the sources, in their discussion, made a distinction between green tea and concentrated green tea extract or ECGC supplements.
Many of the concerns have to do with caffeine.
There are a bunch of scientific articles referenced here:
http://foodforbreastcancer.com/foods/green-tea
Personally, I avoid supplements and stick with the way Mother Nature made foods, including organic green tea in moderation, mostly decaf but sometimes caf. I'm currently drinking it mostly on my week off Xeloda.
Finally, everyone please continue to remain calm and let's not start the "green tea wars" on BCO!
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ShetlandPony ~ Thank you for sharing the link and for re-posting Husband 11's post from June!
You'll have no battle cries from me concerning the green tea. No promises to hold back a few chuckles though. I have one of "those friends" that truly believes my diet is responsible for my cancer. She's been pushing that dang tea on me for years - she drinks it by the gallon daily. I don't like the taste of it. I like other teas but have to have caffeine free and no phytoestrogens. Still my friend tries to push it. She also admonishes me to eat only organic fruits and veggies that have been planted with organic seed, in organic dirt with organic water. And no meat but lots of fish if it is fresh wild caught in an organic ocean. No joke. Oh, and she keeps insisting I join her gym (in a wheelchair?) because I need to stop taking all the poisons my MO is giving me and just exercise a ton. We don't hang much anymore 🙄
Oooops....sorry for mini rant.........
This is the article with the studies that led to my questions regarding antioxidants and Xeloda.
Antioxidant Intake and Antitumor Therapy: Toward Nutritional Recommendations for Optimal Results
The article is unbiased and presents pros and cons with links to the studies that were used to present the information. There is much discussion on how some antioxidants can work with Chemo in a beneficial way and some can actually cause Chemo resistance. Because of the variables in each person's cancer, genetics, phenotype, and treatment plan there are many more questions that are raised and yet to be explored. We are each as snowflakes; unique. (sigh)
I found the sections on melatonin and resveratrol to be of great interest and very encouraging.
As frustrated as we are, trying to find "the right" answers, I can't imagine the frustration the research scientists experience. I do believe that someday soon there will be better, less toxic treatments for us. All the pieces of the puzzles are out there. They just need to be sorted and put in the proper boxes.
I was taking mega doses of Periden-C for hot flashes. It worked so well.... I'll follow my team's advice and stick to just my multivitamin and the nutrients we get from our food. Sweatily though..........
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I just took my first dose of Xeloda after a cycle and a half off for vacation. I sure didn't miss it the past few weeks.
Here is a photo of my family in the Galápagos Islands. It was wonderful and an item checked off my bucket list.
Thinking of you all
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Thanks for the additional links, SP. I honestly don't care if people drink green tea or tequila. My annoyance at times -- and I apologize if I came across as hostile or defensive -- is with definitive claims here or in any bc discussion forum that something is good or bad for us, without a research link to back it up. Most oncologists are very good at what they do, but few have any significant nutritional training, and thus are often quick to tell us, "no" to a food or supplement, often without any reason beyond the fact that somewhere in the past they read either a very broad or very specific concern about antioxidants and chemo. I could write a book about the lousy "nutritional" advice I've heard spewed in doctor's offices -- stuff that makes no sense at all. And I feel that scaring others with you can't do this or that because my onc says so, sometimes isn't helpful advice. I posted links I could find NOT to refute or argue, but because I really wanted to try to get to the bottom of where this advice was coming from. Sorry if anyone read more into it. Deanna
PS ~ Awesome photo, leftfoot!
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Oh dear, Deanna. I, for one, did not think you came off as hostile or anything bad at all. I think we are all admirably calm and congenial in our discussion and intent on helping ourselves and each other figure things out. My general "remain calm" comment was just because I thought we all were doing just fine and I wanted to encourage anyone joining the discussion to do so with the same good attitude. (I think we have all seen threads that went wrong.) Like you, Deanna and shepkitty, I always like to know what evidence there is to back up advice, whether it is from medical professionals or from friends.
Leftfoot, what an awesome family photo! What kind of tortoise is that? Just kidding! Its a Galapagos tortoise and he/she seems to be smiling for the camera.
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First scans tomorrow, since starting Xeloda in May. I'm pretty scanxious. Hoping for the best. Will know somethingby Friday afternoon and I'll check back in here.
😬🙏🏻
Stefanie
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Waiting with you, Stefanie. I think your scan results will be good!
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Spread to my adrenal gland and nearby nodes was found in April PET Scan last week, results yesterday. Xeloda knocked cancer back to NED. I am sooooo happy!! I have cracks in my heels so new kicks today with cotton socks! If that is my biggest problem, I am good!!
Best,
Nel
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yay Nel!
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Thinking of you today, Stefanie! Sending calming vibes, positive thoughts, and lots of good ju-ju, as well as prayers for great results!
Wonderful news, Nel! YaY for NED!!!
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ugh...ok so I did NOT get an MRI because they wouldn't do it when they found out I had a tissue expander. But I Did have a PET/CT which showed NO activity at the lesion in my liver, and reduced uptake in my singular bone met. AND my CEA dropped yet again. So I'm not too worried about having missed the MRi. But I need to figure out what to do with the expander. According to the PET , it is ruptured, which may be from a previous MRI done at a different facility? This PET report is the first I one ive had at city of hope, and is by far the most detailed I've ever seen. Apparently i also have a long healed fractured rib. Who knew?
So, mostly good news today.
Stefanie
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Leftfoot ~ What a beautiful tortoise! Nice looking family too
Great smiles on all of you, including the tortoise. Are visitors to the Islands allowed to touch the tortoises? Just like dogs love a good bum rubbing above the tail 'cuz they can't reach it themselves - tortoises LOVE a nice neck rub. They do tend to lean into the person loving on them. Just like dogs but a wee bit heavier! The Galápagos Islands are on my wish too. So wonderful you were able to share such a cool adventure as a family.Nel - Reading such awesome success stories like yours are what helped me to tough out those first few rough weeks on Xeloda. Thank you so much for sharing . May you continue to be NED from here on out! Different things work for for different people - I've had great results from Udderly Smooth Urea Cream. My feet were bad before Xeloda. I had been using Amlactin for years which helped some. My feet now look better than they have in a long, long time. My hands look and feel good too.
Stefajoy - Tissue Expanders aren't supposed to go into an MRI machine. Unless yours is titanium? I would ask the surgeon what materials were used for your TE and then maybe get some legal advice. So sorry for the damage that was discovered. At least you know now. Fingers crossed that it is either an easy fix or something that won't be harmful. Congratulations on your good news showing the Xeloda is doing it's job!
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Deanna ~ No worries, I didn't take your comments to be hostile or defensive. I was actually delighted! You opened the door for logic and scientific facts to be presented. I absolutely loathe those persons who present themselves as all knowing and throw out their mucked up advice as absolute fact. Everyone should ask questions, not just here but in the exam room too. I hope we can continue to have fun learning together and exchanging info and ideas.☮️
ShetlandPony ~ As you fully understand the true significance of The Comfy Chair, I shall have to admit that in addition to the learning, I do enjoy a good argument. Argument is an intellectual process. Contradiction is just the automatic gainsaying of anything the other person says.😎
~ Shep
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Here are some other links about the antioxidants. Melatonin keeps popping up in different articles as having many positive benefits.
JAMA Oncol. June 2015
Dietary Supplements During Cancer Treatment: Yes or No?
Some pills might interfere with chemo – while others may help defend against tumors. July 1, 2015 - U.S. News & World Report
Cancer Chemotherapy and Antioxidants
2004 The American Society for Nutritional Sciences
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Just a quick survey: Have anyone's eye floaters and flashes gotten really bad while on this chemo? I know a lot of you have the watery, crusty eyes (I do, too), but have your floaters gotten worse?
They say one's vision deteriorates while on any form of chemo for a long period of time. I'm going on 15 months with Xeloda.
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Dear Lita,
I'm on cycle 31 or so on Xeloda and have just noticed a floater too. But, my vision hasn't been the best since my time on Abraxane. Then there's age too. I'm seeing an ophthalmologist in a few days and I'll see what he has to say.
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Stepkitty, no touching the animals in the Galapagos. In fact you're supposed to stay 6 feet away.
leftfootforward, that's a lovely picture. I too am just back from the Galapagos and the highlands of Ecuador. It was fabulous. For a week I didn't think about cancer at all. I went under water every time they allowed it.
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Pajim-it was such a magical place. Just missed you. What boat were you on? Might have seen it. We were on the letty.
Funny thing about that photo- we were pretty far behind the tortoise. That's how big it was. We got to stay in a special camp where these guys roam wild. Great experience.
We went underwater at least one a day, sometimes twice. It was fantastic. And my kids will never forget the playful sea lions and I the never ending sea turtles.
It sure was a wonderful break from cancer and treatment.
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