All about Xeloda
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My schedule for the week on is to take X at 8:30 am and 8 pm. A few crackers, piece of fruit or small yogurt, imo, is enough to be considered “food taken with medicine.”
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kbl, divinemrsm, denny123,
I start Xeloda today. Thank you so much for all your responses and tips. I'm nervous, but feel prepared. I hope the drug is effective for me.
I start on the 14 days on/7 days off schedule and have labs done the week off. I was told it doesn't matter when during the week off I have labs done - i.e. any time during that week. Is this your experience...what you were advised/instructed?
When you started on the 7/7 schedule how often did you have labs done? Every cycle during the week off - i.e. twice a month? Or every two cycles - i.e. once a month?
How often do you have labs done now - i.e. after being on the drug for an extended period?
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wen, I get bloodwork done once a month and have been the entire time taking X. I generally try to have it done towards the end of the week that I'm not taking it. It's just my personal preference, I had no instructions other than just to have them done monthly. So far, the labs are good. The previous treatment I was on, Verzenio, gave me high readings with the liver function tests and a few other things but they returned to normal on X. I’m glad Verzenio works for many, but for me, it was expensive, gave me horrible side effects and it didn’t work!
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weninwi Saw you were starting X today, good luck it sounds like your well prepared! You received lots of good information and I find everyone has their regimen that works well for them. So as you go along I'm sure you will try an assortment of creams etc if you have to deal with HFS. I sure tried it all, Aquaphor, Bag balm, Udderly Smooth, Grape seed oil and Topricin.
Also as far as eating and timing meds I take it between 10-12 hrs apart per pharmacist. I try to take it with either a meal or heavy snack depends what's going on. I set my phone timer as a reminder because plenty of times I start cleaning up the kitchen and almost missed taking it.
My lab schedule is different because I'm also on Keytruda so my labs are every 3 weeks. But if I remember correctly when I was 14/7 off like you I went in for labs on my week off.
Wishing you much success with X!
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I take mine about 10-12 hours apart and 25 minutes after a meal. My enclosed literature siad that the pills work best with partially digested food.
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Weninwi- When I was on 14/7 I had my labs at the end of the off week- so once monthly- as time went on my ANC was too low at the end of the off week and I switched to 7/7- at that time I had labs every 2 weeks (at the end of the off week) and they were always normal-
Good luck- it worked well for me
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weninwi, I’ve had bloodwork once a month for over two years. I was having blood drawn on my week off on a Tuesday. I’ve switched my appointments to Thursday of my week off, and I don’t really see a difference.
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weninwi...I have bloodwork every 3 weeks before I have my Herceptin IV treatment. And I get a CT scan every 3 to 4 months.
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I use Udderly with 20% Urea to keep the peeling from getting worse. You might want to try applying it every night on hands and feet.
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denny123,
Just a thought......you mentioned orthostatic hypotension as problem you're dealing with. I just learned that support stockings may help with that problem. I've worn prescribed knee high, open toe support stockings for years for varicose veins and venous return insufficiency. They work for that problem, but now that I've started Xeloda I'm concerned about how tight they fit on the feet. So I went shopping on-line for an ankle to knee version and that's where I read that support stockings can help with orthostatic hypotension. My Medi brand of stockings cost plenty (I replace them about every 1-2 years), but there are other brands available that are more reasonable.
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weninwi...thanks. I read that also and when my legs seemed to be swelling, I TRY to put them on. But my hands are sore to begin with, so it is hard. My thumbs keep splitting open. So I try to put on silicone toe guards.) I did buy some compression knee socks that seem to do the job and much easier to pull on.
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denny123,
Yes, it definitely takes hand strength to pull on compression stockings and I hadn't thought about the possibility of my hands getting so bad that I wouldn't be able to do it. I'll have to think about that more. I know that covering your foot with a plastic baggie makes pulling on open toe or footless stockings a bit easier. Right now while I'm waiting for the new ankle-to-knee stockings to arrive I've been wrapping my lower legs with ace wraps. The compression isn't as even as with stockings, but it works somewhat.
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Yay me! Today is the first day of my 21st year after being diagnosed with Stage 4 MBC de novo!Originally ER+, PR-, Her2+++ with liver mets. I had a recurrence in 2 chest nodes 11 years ago, which changed me to Her2- Somatic. I have had A/C, Taxotere, Gemzar, Herceptin, Aromasin, Faslodex, Kadcyla, Poziotinib, and now on Xeloda and Herceptin. I have indeterminate spots in my liver and lung, but they are stable. I am currently on Xeloda and Herceptin, for 5 years now.My diet has always been "everything in moderation", except for pure soy products and alcohol.But now my diet has been compromised by the fact that I am on Xeloda (and have to avoid foods high in folate). And I now have hypoglycemia and orthostatic hypotension, which makes my diet even more restricted. But I will soldier on....0
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Wow Denny. That is an amazing feat of endurance! You are my hero.
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denny123,
"My diet has always been "everything in moderation", except for pure soy products and alcohol." Do you mean.....Limited soy and alcohol?...or NO soy and alcohol in your diet? Thanks.
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Denny - Congratulations!! I'm beyond thrilled for you!
Wishing everyone here all the best during this holiday season. Praying for good health and great reports for everyone!
Grant.
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Thanks all!
weninwi-everything seems to have soy, but I don't eat tofu (yuck) or any soy product-like soy mmilk or cheese, etc. I haven't touched a drop of alcohol in 21 years, and seldom did before my dx.
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Denny123, I’m so happy for you. That is great. Xeloda is such an awesome chemo. I’ve gotten15 months on it so far, and I hope it keeps working for you.
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hi weninwi!
My Onc pharmacist said Xeloda is best absorbed with stomach acid do that’s why they recommend taking it 30 min after a meal. For my evening dose (which is usually way past dinner) I have a snack then wait my 30 min. I feel like the Xeloda timetable is ruling my day!
Lanne
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Lanne,
Thanks for visiting this thread.
I like that your oncology pharm had an explanation for the timing. My oncology pharm said she didn't know the reason for the timing and to just take it with food. Instructions I found online say to take it "within 30 minutes of a meal" and that this is based on the instructions given to people who participated in the early trials. I'm going to ask the pharmacist at Accredo, where I get my medication from, what his/her understanding is. Right now I'm taking it 15 minutes after my meal.
I asked what schedule you're on because it seems, based on responses here, many women are started on the 7/7 schedule or are changed from 14/7 to 7/7 due to side effects.....even before a dose reduction.
My primary MO started me on the 14/7 schedule, but my second opinion MO from Mayo said she often starts patients on the 7/7 schedule. If I start to develop side effects or have concerning changes in my blood work, I'm going to ask to change to the 7/7 schedule.
I've not had nausea or diarrhea so far. I've had the feet-on-fire sensation just once, woke me up during the night, but it didn't last long and hasn't returned. I'm only in the second week of cycle 1....so will see.
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Denny, so wonderful that you are at 21 years! None of us know at the point of diagnosis how long we have, but hope is so important. Your story gives me hope. (I am only a few months into this
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To All on Xeloda,
Were you tested for the DPD deficiency or at least informed of the risk before starting Xeloda?
I very recently learned about the DPD deficiency, which is rare (2 to 8 out of 100), but a person with this deficiency can't metabolize 5FU drugs like Xeloda, and this can cause severe toxicity quickly.
This topic was discussed on this thread earlier this year, but not lately.
I was NOT informed of this deficiency risk by my MO, nor by the oncology pharmacist who went over dosage, schedule, and side effects. And I was NOT tested. I only learned about the DPD deficiency from the Mayo doctor who I got a second opinion from in Sept and who I saw again last week for a follow-up. I'm so thankful for this Mayo doctor.
I signed a consent to treat for Xeloda that was presented to me quickly on a screen by my MO, but she did not mention anything about the DPD deficiency risk. How was that an "informed" consent?
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weninwi - no one mentioned DPD to me. I’ll ask this week if I was tested - I don’t see it in any of my path reports. I’ll be interested to see what my Onc says about a dose reduction and scheduling given that so far I’ve been doing ok with SEs, although I assume they increase the longer you’re on the drug (… and I spoke too soon about not having diarrhea …dang). The first two days of my “off” week are the worst as far as SEs go
Lanne
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Lanne,
Regarding the diarrhea...do you feed or replenish your gut microbiome? Doctors who specialize in gut microbiome health say that oral medication can alter or affect the microbiome. Ever since I was on Verzenio I now include both yogurt and kefir in my daily diet. I like kefir so I have a cup of unsweetened kefir every day - 1/3 cup each meal. And according to testing by ConsumerLab.com, the brand Choboni Greek yogurt met it's label claim of 10 billion cells per gram and they confirmed 4 of the 5 probiotic species claimed on the label.
I'm in the second week of cycle 1.....so far only some red areas on my feet......I'll watch closely during my week off.
Wendy
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Wendy,
I do eat yogurt but may try to increase it.
What a difference a few days make. Diarrhea has kicked in to high gear for the last few days- not a lot of warning so thank goodness I’ve been home. Started anti-diarrheal meds as I have dr appts tomorrow! Also my fingertips and toes have amped up as well. I’m day 4 of second off week on a 14/7 schedule of 2500 mg. Haha me for thinking I was doing so great on SEs. The diarrhea is awful
Lanne
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Lanne,
I'm sorry you're having to deal with diarrhea. I know it makes for a short leash and the need to move fast. I had good results using imodium when I was on Verzenio. Did I mention the product Banatrol? It's a food product that claims to help control diarrhea, nausea, etc. It's available on Amazon. I've haven't tried it but my oncology pharmacist said it was OK to use, he just wasn't sure about the claims made.
I now have a couple of mouth sores. Was instructed to start using a salt and baking soda mouth rinse 4 x day. There seems to be different recipes out there, but the one I used is 1/2 tsp salt and 1/2 tsp baking soda in 1 cup water....added to a pint jar that is now sitting on my bathroom counter.....made fresh each day. I also read about cryotherapy for mucositis due to IV chemo. Even though not exactly applicable to Xeloda, I figure it's easy enough to suck on ice chips or add ice to my water, and maybe it will help a little.
I hope your appt with your doctor goes well. As your time permits, please let me know if your doctor recommends a schedule change or dose reduction.
Wendy
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Lanne--did you read where I advised ladies to avoid foods high in folic acid and folate? I have been on Xeloda for 5 years and for the first 3 years I had badly infected toenails and fingernails.
I finally remembered that I had read about avoiding foods high in folic. My feet are now just dry, and are tons better. I can eat those foods in moderation, but no more huge spinach and avocados for me anymore!
I have constipation, which I do prefer to diarrhea.
Denise
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Hi Denny and Wendy,
I did read the warnings about foods and folic acid. I might start a Food and Feet journal to track what may be triggering my H/F problems.
Talked to my PA today and discussed ways to help with H/F problems (ibuprofen, icing, etc) and intestinal issues (bland foods, starting anti-d meds sooner). I decided to go one more round at same dosing but reduce if things get unmanageable.
After a day respite, intestinal problems are back - (TMI) more gas than I ever thought a body could produce.
Have you experienced a change in how food tastes? Had that with pacitaxol 4years ago, wasn’t expecting it again.
Lanne
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lanne2389,
Thanks for the update. I have not experienced changes in how food tastes with any cancer med yet. I've cut back on dark leafy greens per Denny's advice, but so far that is the only dietary change I've made.
Today is my last day of cycle 1 of a 14/7 schedule. So far I have two mouth ulcers that have not worsened since I started using the water with salt/soda bicarb swish 4x/day. I've also been using a product recommended by my periodontist to help with sore mouth tissues. It's expensive, but maybe it is helping? Available on Amazon: AO ProVantage Dental Gel. I also have one finger with a deep crack that bleeds, but my feet seems to be OK so far. I heavily apply lotion twice a day. Will see what happens in terms of SEs during my week off. I have a bone scan next week to establish a new baseline, as I progressed on my last treatment of Everolimus and Fulvestrant.
I recently read that high dose anti-oxidants like Vit C, Vit E, and Zinc are discouraged for patients on IV chemo. I was told the same thing when I had radiation after my lumpectomy. I asked my oncology pharmacist if this restriction applies to oral chemo like Xeloda and was told "yes". The amount found in a daily multi-vitamin or consumed in a typical diet is fine, but no high dose supplementation. No one told me this when I received initial instruction for Xeloda.
Hope you're able to figure out how to best control the diarrhea. There is so much trial and error in dealing with cancer med side effects. This website and all the tips shared has been so helpful.
Please keep us posted on how you're doing.
Wendy
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Wendy,
I sailed through my first 2 cycles of xeloda (4000mg/day), but seem to have a quick onset of side effects after cycle 2. Vomiting/diarrhea/sore feet seem to have appeared overnight. I don't eat many foods high in folic acid. I'm taking an extra week off as a result. On the bright side, tumor markers have dropped to normal in just two cycles. Wishing you minimal side effects!
Kelly
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