All about Xeloda
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Aurora, that is a high dose. Ask to try a reduced dose. Many of us take 1500mg twice a day, so you are practically getting an extra dose each day. Body weight is factored into the dosing schedule to some degree. I don't remember the specifics, but if you search this thread for "gciriani weight dose" you should find a post where it is explained.
Be sure you are not taking a lot of folic acid, nor consuming it in your processed baked goods. That can exacerbate the toxicity symptoms.
I had a flare of mouth sores in the early months. I took an extra week off and started again, and they never returned (in three years). I took a lysine supplement and that helped a lot.
Hope you feel better soon.
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Aurora my daughter is also dealing with mouth sores, and the mouthwash is not helping.
I have a problem that I don't understand any of these details of what mixes with what, and what's good for what. I see the BT's myself at the Portal, 4 days after she has the BT drawns. It's every week that she goes to Doc. But unless something is wrong, or very wacko they don't talk to us about it. So how can I know more besides of all the good info that I see in these threads? Like all the mixture of the supplements, what kind of a professional should I seek? She does not take any of these supplements.
Onco just asked last week what she was on, and all she is taking is Vit D, and Onco did not recommend anything else. Timothy you seem to be so knowledgeable, how can I catch up. She could really use a lot of help and maybe these supplements would help.
Lulubee like how much Lysine?
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Timothy, Thanks for all the info. I also take Theracurmin HP by Integrative Therapeutics that my NO suggested.
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Momallthetime, honestly, coming up with solid info has taken more hours of research than you can imagine.
I initially consulted with a naturopath when I was first diagnosed with mets. She specialized in breast cancer. She helped me cut through the mythology to get to supplements and supports that have evidence-based research behind them. She has since retired and, sadly, I have not yet found another ND to replace her.
A good place to start is to follow Constantine Kanaklidis on Facebook. He is a breast cancer researcher who has extremely stringent standards for his recommendations. There's a website where his complementary recommendations are posted. Google for "no surrender breast cancer" and you'll find it.
I also cross-reference everything on the Memorial Sloan Kettering hospital database, where they have info on herbs and supplements.
Then I check Pubmed research abstracts online.
I do a ton of googling to make sure my regimen is not overtaxing the same liver enzyme pathways that Xeloda taxes. Anything that uses the same pathway gets reserved for off-weeks.
Hope this helps.
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Aurora, 4300 MG would blast anyone's mouth. You may want to ask for a dosage reduction. Any other problems?
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Lulubee thanks so much for the input.The truth is I have a hard time trusting any medical field. Some at least I could look up on the internet and get papers and papers backing it up, even though it could be just big Pharma speaking. I know. But when it comes to supplements, where I don't understand anything I am even more skeptical.
So how can I trust the right person for the job? Where would I even start looking for these people?
Also, does everyone here know how much of the liver is functioning etc... When I asked Onco, she said it was not necessary to know the details, we could see the overall picture on the BT, no scans or more indicative BT necessary. (unless they understand something that I don't from these BT's), I see the AST/ALT Phosphate etc...
thank you,
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Aurora: Ask your onc if you can drop to 3000 mg/day (at 500 mg/pill, that would be 3 pills am and 3 pills pm). Also, are you 14 days on and 7 off, or 7 on and 7 off? My onc just switched me to 7 and 7. Was having TERRIBLE trouble with hands especially...can't even feel my fingertips to put on earrings. Also diarrhea's been pretty bad. Hope we both do better with the next cycle ;-).
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Thanks Lita yes I intend to call my doctor first thing in the morning and ask for a dose reduction and/or change in schedule. Sending you hugs of support.
Aurora
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Ahcc is a proprietary shitake mushroom derivative. It's been enzymatically processed to reduce the molecular weight and improve absorption. It is claimed to boost the immune system, blood counts, fight cancer and increase the effectiveness of chemo. These claims are not backed by proper clinical trials, so it is clearly somewhat speculative. My wife is willing to give it a shot, and compare it following maitake D extract which she has taken for the last 6 months, which is also supposed to do the same, but once again lack iron clad evidence of effectiveness. A lot of this stuff is used in asian hospitals, there is evidence from case reports and tracking of patient groups, but the evidence lacks the golden standard of double blind placebo studies. If it doesn't do anything in 4 weeks, we will drop it. It's quite expensive. Around $5 a day. We know the maitake d is doing something good for her blood counts in as far as one can tell from before and after. She started the maitake D before she started cancer treatment, and near immediately saw improved neutrophil counts. Saw no reduction in tumor markers though, so if it fights cancer, it doesn't do it that quickly. But then again neither did xeloda.
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I figure if nothing else, the mushroom supplements boost immunity. I decided to give it a try after watching Paul Stamets on TED talks.
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My philosophy on complementary and alternative medicine is to weigh the risk to benefit, and also factor in the cost. If the risk is low, has some evidence to back it up and the cost is moderate, its worth considering. If it has significant evidence to back it up, I'm willing to pay an even higher price. I believe various mushroom based supplements have good evidence, despite not having reached the threshold of fully proven.
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Who is the professional that could give us all this info. I am totally ignorant about all this. It's like a different language. Onco does not spend anytime talking about any of it. And how can one know to trust these people, is there a monetary interest? I know someone that was taking tons of different vitamins for IBS, and besides costing her all her savings, she got better for a little while and then it went down hill.
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I like to go to sites like Memorial Sloan Kettering's, "About Herbs", National Cancer Institute's "Complementary and Alternative Medicine for Patients", and also to review Pubmed to see if there is more recent research on a particular topic. I won't trust a single source without following up on the references and science behind it. You could do more harm than good potentially. Drug interactions are also a concern and estrogenic properties for ER+ breast cancer patients. I wouldn't blindly follow a Naturopath without doing independent verification of what they recommend.
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Timothy, Have you ever looked at IP6?
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Yes, on the IP6. I've forgotten what all I read, but it passed my scrutiny, and my wife is taking it along with inositol. EDIT: But only during her two weeks off xeloda. I must have found some concern for interference with chemo. Pardon my lack of recall on this reasoning.
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Timothy thank you so much for your prompt response. Btw, I assume that your Onco oks everything she takes? I am having a hard time imagining that my daughter's Onco, which is very highly regarded will know all these things when asked, maybe. My take from past experience, is that docs are afraid they won't matter as much if "the people" take these supplements...
You certainly doing great work!
I really have a hard time understanding these things even thou i do find it fascinating.
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Taking IP6 off my wife's list. It should not be combined with an anti-coagulant, which my wife is currently on.
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MomATT, I have asked my oncologist in the past about this or that complementary thing, and she always tells me that she does not have any expertise in that area and that she focuses her studies entirely on oncology and clinical literature. I respect her honesty. I would not want her to opine about things she knows little about.
I felt confident in the advice of the ND I consulted some years ago who knew a great deal about breast cancer (who has retired, sadly), but like Timothy, even with her advice, I ran my own checks on things before investing or experimenting. I believe I posted my go-to sources above, which mirror what Timothy shared except that I also check in with Constantine Kanaklidis, the breast cancer researcher who also studies complementary strategies-- both on his page at NoSurrender, and by googling his name with the name of whatever I'm researching. He offers all his findings to the BC community for free, so there's that.
Like you, I am wary of profiteers, and personally I would include much of the stuff on "The Truth About Cancer" documentary in this. There are some strands of good information there, but a lot of it appears to me to be under-vetted hyperbole from people who are well-meaning, perhaps, but who just strike me as gullible at best.
I also do google searches for whatever I'm looking into, with search terms like "Xeloda capecitabine curcumin" or "Xeloda capecitabine liver enzyme pathway curcumin" to see what comes up. You could start there.
I have to see enough evidence to satisfy me that something is worth my money, time, and bother. This stuff gets expensive! I do not look for the same kinds of clinical trial summaries as are done on prescription drugs, because alternative therapies don't usually play well on that playground (and usually get bullied there). Even so, you can find information at PubMed on things like Vit D3, curcumin, frankincense, etc. I always look there.As an aside-- the liver enzyme pathway is something to check on for everything beyond ordinary vitamins, so you don't wind up overtaxing the liver pathway used by Xeloda. I reserve any extra supplement that uses the same pathway as Xeloda to be taken only on my off-weeks. Sounds like Timothy's wife does the same. The liver and other organs are working mighty hard to process/endure Xeloda during dosing weeks, and it's best not to overtax the body on those days. Every supplement we take is metabolized by the liver. Same goes for many essential oils, btw. The liver is overworked during dosing weeks and needs some TLC. On those days we want more sleep, more lemon water, greens and green drinks, good bowel movements, daily showers or (better) baths to help our systems detoxify.
I believe, too, that good food really is powerful medicine. A nutritionist told me six years ago, when I was pestering her for advice about supplements for getting the bluff on cancer, that she believes WAY MORE (emphasis hers) in the produce section of Whole Foods than she will ever believe in the supplement aisles. That really struck me and has stuck in my mind all these years. It is always commendable to get cancer-fighting nutrition from food, and that is something we can do every day, whether we're dosing that day or not. (For that reason, I generally feel no qualms about taking food-based supplements while dosing.)
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Timothy, Thanks for your response on the IP6. I was taking high doses of IP6 with Inositol and stopped in May. I read studies have been done with breast cancer and that it helps, but must be taking in high doses. I was taking 10 pills a day and I hated swallowing them so I stopped. I was also doing mistletoe shots and stopped in May because my NO left the practice. I am sure this is just by coincidence, but shortly after stopping both of these CAM treatments, my tumor markers started rising and now I have a liver tumor. I guess I will never know if the treatments were actually helping, but I found a new NO and I'm just now starting back on mistletoe. I think I will start back on IP6 with Inositol, at least on my weeks off.
MomATT, I have tried discussing supplements with my oncologist and she told me they can't give advice on supplements. A qualified NO can give you advice and suggest what he thinks is needed. Best bird recommends that the NO have FABNO after his/her name. I took the advice of lulu bee and googled "no surrender breast cancer" and found the website. There is a section on the menu about CAM treatments that I found very helpful.
Lulu bee, thanks for the information on Constantine K. and the website. A wealth of good information!!
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Hair & Xeloda......Do you have hair shedding on Xeloda?? I am coming off Ibrance where I lost 75% of my hair. I am hoping to hold on to what is left or start shopping for a wig.
Robin
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I didn't have hair loss on Xeloda.
Babs
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Rpoole: No "head hair" loss for me on X (I'm in cycle 9 now), but I did lose most of my eyebrows (boo!), more than half of my pubic hair (who needs it? don't care), and most of my underarm hair (less to shave ;o). Depending on how long you're on X, you may lose toenails.
Timothy: Thanks for the reports.
Lulubee: I can't eat too many vegs on X. I get terrible diarrhea. Raw vegs tear me to pieces and go straight thru me (same w/smoothies!!). MO says I can take D3 on cycle daily and B6 every other day. She's aware of the liver pathways, too. She said to take the vits with lunch, not b'fast or dinner, which is when you take X.
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Babs & Lita, Thanks!
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My finger tips are shrinking and my fingernails are curving down and turning into claws!!!
DH said to just cut them, but I need some protection as I don't have any feeling in my fingertips any more thanks to X. (It's REALLY hard to put on earrings!)
My toe nails are shrinking at the nail beds and some of them are falling off. Big toe nails (what's left of them...) are sore and a little oozy - been keeping them clean w/rubbing alcohol. Pisses me off since winter's on the way and I tried my nice boots on, and it hurts to wear them. Oh, and I noticed that pieces of skin on the toes are turning black just b4 they fall off. I don't try to pick at them because I'm hoping newer skin is growing underneath. It's totally gross...DD says, "Mom, you look like you have leprosy!"
How's everyone else's tootsies and hands doing?
L
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I have had problems with my finger nails and toe nails from the of the treatment. I can't wear sandals anymore because they look so gross.
My skin is also darker.
Ziz
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lita- I had huge issues with my big toes on Xeloda. After a very long time ( 2 years) I went to a podiatrist. Best move ever. They surgically removed the part of my big toenail that was causing me the biggest issue. This in turn cured the chronic oozing I had. My tissue around my big tie swelled so much it caused my tonsils to become ingrown basically. Not had a problem since. I recommend seeing a podiatrist to see if they can help with the feet.,
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Thanks, left foot ;-).
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Lita57, I've been taking Xeloda for over three years. I have lost most of my toenails including from both big toes. I have taken to wearing closed toe sandals to hide the fact. The nails slowly and painlessly detached. I used to always wear toenail polish which hid the fact my nails had darkened. It took me a while to realize the black color meant the nails were no longer attached to the nail beds!
On the other hand my fingernails haven't been affected at all except that they grow faster and are stronger than they have ever been! I'm thankful for this because while I can hide my missing toenails it's more difficult to hide problem fingernails.
My hands and feet are terribly beaten up by HFS. I've had two dose reductions due to HFS over the past three years and even changed my dosing schedule from 14/7 to 7/7. The HFS never goes away. It gets worse as time goes by. My heels and my hands have cracks that bleed.
I'm a huge fan of using Super Glue on the cracks. It stops the pain, blocks the blood. My oncologist teases me but, hey, whatever works! I have tried every skin cream and lotion I can find. Since HFS is caused by leakage of Xeloda out of capillaries and into surrounding tissue there's nothing we apply to the surface of our skin that prevents or cures HFS. We're dealing with chemical burns under our skin.
On the other hand, Xeloda eliminated my liver mets and as far as we know it's still keeping them away.
Kessala
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Kessela Well worth the side effects if X is working. I had no issue with all the ses since it brought me to NED if even for only a short time. Hoping to reach stable or NED again in my future!
Bab
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Kessela that's scary when you say that the HSF only gets worse overtime. I finally got a hold of my onc and she agreed to lower the dose I was taking 4300 mg a day and will now be taking 3300 mg a day. Hopefully this will help even if it's a little. Thank you for explaining that the HSF is caused by the X leaking into the skin and acting as a burn which makes sense. Just understanding it helps accepting it easier.
Hope everyone has a pleasant evening as pain free as possible.
Aurora
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