All about Xeloda
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Wandering, love the website. I started it and it even has my vitamins. Thanks!
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Jobur,
His approach is not something new and cutting edge but it is interesting the different approaches. Apparently here, having patients on Xeloda long term is not that common. He indicated some patients stay on it at a very low dose (I was on 2300 mg per day). He gave me the option but I'm comfortable taking a break as I don't expect things to explode over a couple of months.
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Well, 3 days into xeloda and I've failed it already. Started on Sunday, and was nauseous then and yesterday. This morning I took it and went to radiation where I almost threw up on the table. Told my radiation oncologist, who said it was NOT the radiation. She called my onc and I was told to suspend the xeloda for now.
I was at a relatively low dose -- 2000 per day. But I am so sensitive to meds that it probably doesn't matter what dose they were to give me. The RO checked my BP and said I was borderline dehydrated, and I should probably get some IV fluids and anti emetics and would feel a lot better. My onc was supposed to set that up -- still no word and so here I sit. I have not been able to eat since Sunday (other than very limited servings of Rice Krispies) and also haven't been drinking that much.
So trying to sip on some ginger ale and waiting for some word on this. I am really ticked that I haven't heard anything yet.
That's today's story.
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Oh BevJen, I am so sorry to read this. You struggle so much I cry for you. I will pray for a quick answer and better solution for you. May God restore you.
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Thank you, IntoLight.
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Shoot, shoot, SHOOT, Bev!!!....I'd rather use a different word but won't. Keep us posted.
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Bev- I just PMed you- fluids and an anti-emetic sound like a really good idea. Mae had this problem as I recall and was really helped by promethazine. when you get too dehydrated you can't re -hydrate without an IV- then you will feel soooo much better. Do you have an infusion clinic or do you have to go through the ER? It is faster at the infusion clinic where I get care.
Hugs and hoping you feel much better very soon. don't give up on Xeloda yet
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Nkb,
I just responded to your PM -- but also wanted to mention here that we found a work around for the ER. My son is a volunteer EMT and he said that if I went into the ER past 5 pm, it was likely that I would have to spend the night, due to timing. Didn't want to do that, so we contacted IV Doc, a company that sends out nurses and paramedics to do fluids and anti-nausea drugs via IV. They are coming in a couple of hours. It's totally not insurance based (I have Medicare, and I know they won't pay for it) but it's worth it for me not to have to stay overnight in the hospital, even if it's only the ER.
This would only work in big city areas, I think, so it may not be available to all of you, but if you're in an urban area, it's probably worth looking into.
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BevJan- so sorry! Some ladies put the pills into gelatin capsules. And a prior anti-nausea should help also. Did you take the pills a half hour after breakfast?
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Hi Ladies (didn't see any men when I read back), most of you I am familiar with as I have been reading here since being diagnosed Stage 4 and going on Arimidex four years ago. Felt mostly fine all that time, and I could put cancer at the back of my mind. I read my latest CT results on My Chart so I knew I had progression, but I was a little shocked at my next treatment, from Arimidex (with a brief stint on Kisqali) to Xeloda. Not what I guessed it would be. I start next Tuesday, 4 pills each morning and evening and 7 days on 7 days off. I don't know the strength. And my oncologist gave me a prescription for promethazine. It is helpful to read what to expect and to see how others tolerate it. On the positive side, my oncologist said I wouldn't lose my hair.
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Welcome Dorothy! The pills are typically 500 mg each, so that is a high dose. At the first sign of soreness of your hands or feet, I would ask your onc for a reduction. I use Aquaphor night and day. I also have to limit the foods with high folic acid----greens, dried beans, etc.
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Hi Dorothy,
Dose may be similar to what I started on. They come in 500 mg and 150 mg tablets. I started at 1300 mg in the morning and again at night. I ultimately dropped to 1150 mg twice a day which was helpful for the HFS.
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Bev, no! Somebody give this woman a break! Don't give up on Xeloda yet. You know it took me three tries adding more anti-nausea and anti-diarrhea meds plus a dose reduction before I could do my current drug protocol.
Also you might ask your onc about the genetic test to see if you have a "germline genetic variation in the DPYD gene. This is a genetic predisposition with an established mechanistic basis that links genetic variation in the DPYD gene to an increase in systemic drug exposure, resulting in an increased risk of toxicity" with Xeloda. This would help your onc to know what kind of dose to use for a re-try. Here is an article.
https://ascopubs.org/doi/abs/10.1200/OP.20.00553
What a brilliant idea to get the home nursing service for your fluids and electrolytes. You do not need any more hospital stays if you can avoid them, no thank you! It's amazing how some fluids and electrolytes can perk you up. (Beware oral potasssium supplements. They give me diarrhea.)
Hang in there, my friend.
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Regarding folate in foods, I have a somewhat different perspective. I would rather lower the Xeloda dose a little than avoid so many really healthful foods like beans, leafy greens, and cruciferae. If folate in foods is raising one's blood level of the drug, it seems one does not lose anything by adjusting the dose accordingly. (Folic acid supplements are another matter, and I would avoid them for other health reasons as well.)
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Thank you Denny and Sadie for the responses. Denny, I saw your suggestion for Aquaphor in an earlier post, so I have already ordered it.
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Thanks, SP. I just send her the ASCO article. She usually reads what I send her, so hopefully she will. I just need to recover from this latest attempt to use xeloda, I think.
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Shetland, good point. Green beans are okay, and also peas. But since I am only on 2,000 a day, that is a very low dose. I was on 1,500 a day for a week, in spite of my onc's orders for 2 weeks of 1,500 at 7/7.
I didn't feel safe at all on only 1,500, since according to my weight, I should be on at least 3,000.
The moderation thing is the key, I think. I have been eating a little broccoli, and even had a bowl of spinach salad at a picnic. Cauliflower and cabbage are in the moderate folic range and I have been eating those also.
I had been eating very large servings of broccoli and spinach salads, etc....and that is what did me in.
Amazingly, my hands and feet aren't even pink. And today is the last day at 2,000 for a week.
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I have a question: I have read a couple of times recently that some are putting the Xeloda tabs into gel capsules before taking. Would that not delay Xeloda's reaching the body, and thus throw off the 30 min window for taking the drug after eating?
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Question for all: my MO is not willing to throw the towel in on xeloda. So now she's proposing that we try again, with only 1 tab in AM and 1 in PM. That would be 1,000 per day. I have mixed emotions. I cannot go on 2000 per day after my recent issues with that. Not wanting to get flushed every few days just to tay on a drug at a particular dosage.
Is anyone on here on only 1000 per day? And how is that working for you?
Thanks.
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BevJen- after my problems that were apparently from eating too many salads, I had to take a 7 week break, then did a week of 1,500. I haven't had a CT scan yet to see the result.
At 1,500 a day, I had zero HFS. Worth a try, I think.
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Joyner-that is a good point to ask the onc. Or if it was me, I would put an empty gel capsule into a cup of warm water to see how long it takes to dissolve.
Or maybe take the pills in capsules 15 minutes after eating.
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Bev, my onc as a colon cancer patient who is successfully on 500/day. I know that's NOT the same, but still it is comforting on some level. Perhaps your onc hopes to gradually increase your dosage, sort of "sneak up on it". Good luck!! I'd be inclined to give it a try.
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Lynn, That's interesting. I do think her plan is that maybe we can gradually increase, but she hasn't shared that with me yet. I don't know if I can even tolerate the 500/500 per day, but I think I'm willing to try and see if it works. She has promised to provide me with more robust nausea support, so that's something.
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Hi BevJen,
My MO indicated that sometimes they maintain patients here on a continuous low dose of Madame X. Apparently staying on Xeloda the regular dose long term is not within the standard of care here. That came as a bit of a surprise to me but given that you have ILC, I agree that it is worth a shot. It might get you over the hump in dealing with the nausea.
Edited to fix Apple’s typo
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I am sure you meant Xeloda and not Xanax...
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LoL. Nothing like autocorrect.
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Dehydrated from diarrhea, Pedialyte was recommended. Less sugar than Gatorade etc. I use about 1:3 in water. Helps. I think strawberry is tolerable taste.
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DorothyFrom..
This is my list of products I have used over my one year cycle on Xeloda. I have added items from other lists that have been posted here. I have had to change what to use depending on how I was feeling. I"m sure there is plenty more out there. NINA
CREAMS AND LOTIONS USED DURING XELODA CYCLE, DIFFERENT DAYS, DIFFERENT MONTHS, DIFFERENT NEEDS
PRODUCTS THAT CONTAIN UREA-Urea is used to treat dry/rough skin conditions, nail problems, removes dead tissue to help wound healing.It is a known keratolytic. Keratolytics are medications designed to dissolve skin flakes and scales. . "These products and others containing urea, salicylic acid, or ammonium lactate can be useful."
Atrac-tain Cream- A moisturizing Cream with 10% Urea and 4% AHA
Udderly Smooth- Hand & body Cream- Extra Care 20 (the pink item, has urea in it, not the less expensive red one).
O'Keefe's- Healthy Feet, - This gets used on my hands too since I have it on my hands to apply to my feet!
O'Keefe's-Working Hands (same ingredients as healthy feet except one added, Allatoin)
NON UREA PRODUCTS- soothing
Aquaphor- Healing Ointment – Petroleum is the active ingredient (cools my skin and makes it more pliable. It's a bit greasy but works its way into the skin and can be the only thing that feels good. I buy the BIG jar.
Lansinoh- Organic Nipple Balm (first ingredient is Organic Sunflower Seed Oil)
WHAT TO WEAR FOR WALKING- WHEN REGULAR SHOES CAUSE BLISTERS OR PAIN
Dearfoam Slippers for Women, Darcy Velour Clogs- I used even when shopping. I used on my worst days.
Cozy Crocs- Crocs that are lined for comfort.
EXTRAS
Cotton Gloves with fingers tips missing (helps to hold on to objects)
Toe Coverings- silicone toe caps (you can cut to size), or individual toe wraps that go around the toes to reduce friction from rubbing other toes.
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Thank you SO much, Nina. I have stocked up on much of what you recommend as I start treatment tomorrow. How long did it take with you for the side effects to start?
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Hi Dorothy
I started Xeloda 3 days ago and feel I’m literally sitting here waiting for a bomb to drop. It seems everybody experiences different symptoms. I’m stocked up on creams, cotton socks, ulcer gel mouthwash etc. I’m on 2150 twice a day, I’m drinking 2 litres of water a day.
Hope it works well for us all
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