All about Xeloda
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Hi jobur and Wandering, I remember you guys from other tx and dx threads. I had some light headedness and lack of mental sharpness at first on Xeloda and some unexplained dysphoria. It eased up, though. Like others, I'm finding my best days on the 7/7 schedule are the first two days of the medication week. I'm on day 3 of my week off, and finally have an interest in getting some things accomplished vs. laying on the couch watching movies (that said, I'd like to recommend the 2019 film Ophelia - it's lovely and well-written and quite unusual.)
It's interesting that folate makes things worse. I have noticed that some foods make my skin itch shortly after consumption.
I have not found it possible to drink the 64 ounces of water my cancer center wants me to. I'm lucky to drink half that in a day.
Does anyone else find food tastes bad sometimes, or you're hungry, but not interested in food? I get that sometimes, for the first time in my treatment history. Losing a bit of weight, not enough to be concerned yet, though.
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Nine Twelve: I'm with you. Food tastes "acidy". I haven't found a cure for that but some things do taste better. I lost 60 pounds but gained back about 15. I'm a pretty good cook but I'm with you - I have no interest in cooking and not much interest in eating. That's the good and the bad for me since I've always been heavy. My husband has started eating around 3:00 pm and usually doesn't want dinner so that gets me off the hook from cooking much for dinner. I realize I need to eat an evening meal so I can take my pills but the whole issue is a bit challenging. Since I rarely eat lunch I do need to eat an evening meal even if nothing appeals to me.
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Wow, that's interesting. For me, the food ends up tasting like bad breath or something. I've started flossing daily again, and it helps.
I think the "meal" that we need to eat with our meds doesn't have to be huge, but it should contain some protein. I rely on peanut butter with apple slices or toast a lot.
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NineTwelve- I have a soda stream/ that’s how I get the water in. And if I really don’t want water- I do the soda spring with a dash of ginger ale and lots of ice.
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When I was on Kadcyla before my current Xeloda, my tastes changed a bit. And it is the same now on Xeloda. Brita water tastes weird, so I have to drink tap water.
Whole wheat bread tastes weird, so now I eat only non-healthy white bread.
And I can't eat stuff with artificial flavors-like apple cinnamon oatmeal.
When I started on Xeloda over 3 years ago I didn't have my usual voracious appetite, but it sure came back after about a month.
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Denny, I often use Cortaid/hydrocortisone cream when my skin itches.
There’s no magic answer in dealing with hfs. I did have a dose reduction which helped. The cream with urea I tried made things worse. Aquaphor is greasy (gave the tube of it to dh and he loves it). It’s okay on the feet but not my favorite for hands. Other creams I tried, like Neutrogena and Aveeno feel waxy.
Of everything I’ve tried, my go-to is Curel Ultra Healing Lotion. I think because it’s a lotion, not a cream, it seems to absorb a bit into my hands which soothes the dryness. Reasonable price. I threw the urea stuff away, and I’ve been using up the other creams on my feet at night but the Curel is my favorite for both hands and feet.
Can’t remember if I mentioned I had Covid in January. It was rough, had a fever, cough and nausea for 14 days which I spent in bed. But recovered. Got my first vaccine shot a couple weeks ago. Had side effects for about 48 hours. I, too, will be glad to get the second shot and am ready to move on from all things pandemic!
I bought a pretty, white with silver trim insulated travel mug that I keep filled with water and drink all day long. It really helped me increase my water intake. I feel like one thing that helped me through Covid was being hydrated before I got sick and staying hydrated while sick (drank a lot of Gatorade while sick, too).
Btw, I practiced all the pandemic guidelines and still got Covid. No idea where I got it from, me and dh were so cautious.
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One more thing, about the insomnia. I use an IPad and have it set so the display/screen automatically turns more warm from sun up to sun down. Something about the blue light of the iPad or computer screen, if you're exposed to it too long it interferes with your sleep. So a warmer screen is supposed to eliminate it. It does seem to help some. So maybe look into that if you're on the computer or iPad in the evenings before bed.
My sleep patterns are such that I will have a few good nights rest in a row followed by a couple nights of being awake a few hours in the middle of the night. And it sort of repeats itself over and over. There's often no rhyme or reason why I sleep better or why I can't sleep. It sometimes helps to get out of bed for a small snack and watch a little bit of tv, but I never use the iPad then. I always fall asleep by 4 or 5 am and usually up by 7 or 8.
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All of your conversations are so helpful. I am on a reduced dosage of 2500mg (from 3500) and it has been more tolerable. I am still on 14/7 cycle. My onc cares about my QOL. My H/F is light and my stomach cramps are lighter and shorter. I don't ever sleep,well. I thought food tasting weird was my thing but thankful to read others are going through this too. I do use Aquifer and like Eucerin for my hands. My next PET scan is the beginning of April. It is so good to have this forum to share.
I had a rough four days with my second vaccine but it is all good now. We just keep pushing through...
I lost another friend to cancer last night. I can't keep track of the number anymore. Chris0 -
Jobur - interesting to see a study saying that worse SE means Xeloda is working.... I was on Xeloda for 1.5 years and the HFS was pretty intense!. I had to lower dosage several times to manage, but it worked and my tumor shrunk and PET uptake dramatically decreased. I only discontinued bc I decided to remove the tumor so I could go off chemo.
As for HFS - Aquaphor worked much better than Udderly for me, but I seriously tried every thick lotion out there. I didn't have much on my hands, just feet. I found wearing very thick/padded slippers at all times helped to relieve some pain. Acorn makes a great spa slipper that really helped me get around.
Karenfizedbo15- I'm surprised your Onc said that most tolerate Xeloda well. Mine was pretty straight up about the HFS being very challenging for most. Fortunately, there's a lot they can to to adjust dosage to help.
After being off chemo for 2 years, I have a new met - this time to the liver and I debated on starting Xeloda again, but I've decided to do Piqray instead and see if SE are more manageable. If not, it's back to Xeloda for me.
Good luck to everyone with Xeloda! I hope it works for you as it did for me.
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I posted a day or two ago about my Folic Acid problem that made my feet worse. Today my specialty pharmacist called about my next refill and I asked her if she knew of a good site in which I could get info on Folic.
This one is great....FolicAcidNow.Net..... Click on the Folic game, and you can see a lot of foods. You can sort by Folic Acid and also Folate in foods. So I was able to get a better picture of what to eat.
So now I have a plan.....
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Okay all. Today is a good day. I was so worried about how I would respond to chemo as Taxol was a bust and my earlier dance with Xeloda was inconclusive. I am thrilled to report my liver mets have reduced in size. No details yet on measurements but OMG what a relief. Hope others have similar results!
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Sadie, great news! I am so happy for you.
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Yay for you Sadie!
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Congratulations, Sadie! My first scan is coming up in two days. I think the X is working, but it will be nice to know for sure. After that, I can take a short break from tx and go get my vaccine(s).
Denny, what low folate foods will you be eating? I guess I could go to the site, but I'm curious about how others apply their dietary restrictions. (I have a sinking suspicion that all my favorite foods are high folate.)
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NineTwelve.....the only foods items with no Folate are meat, chicken, fish, potatoes, apples, peeled cucumbers and junk food. Seriously. Chocolate is okay!!
Hardly a healthy diet and a vegetarian would be in trouble. This is a good site....FolicAcidNow.net.
Greens, nuts, whole grains, most vegetables are bad.
I will continue to eat the stuff that have Folate, but at a low level like eggs, bananas, orange juice, and the vegetables that are lower.
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Yay that I finally have a Covid Vaccine date - April 28! I have bilateral lymphedema and need the vaccine in my thigh and no one does that.
But I called UPMC ( My Health insurance provider) and they do the shots in a hospital and will poke my thigh. And I know that they will watch all of us carefully, unlike some of the other places around here.
My specialty pharmacist said that since I am on chemo, the efficacy of the vaccine might be reduced. But I don't intend to ever let my guard down.
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Sadiesservant, I am so glad to hear this tx is working for you! Out damn spots! Go Madame X!
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Just found out I will be starting this drug in 2 weeks. I am going to research as much as possible. Thank you to everyone who has taken the the time to post.
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Welcome Anne45! Have fun reading thorugh 405 pages !
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Anne, I'm going to PM you about Xeloda. Good luck to you!
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So, after 2 dose reductions and shortening of timescale to 10 days instead of 14 in 21 day cycle and pretty bad SEs especially on the second cycle of Capecitabine, my team have reduced the dose for a 3rd time on this 4th cycle down to 2600mg per day instead of the 3600 they started me on.
They’ve also taken bloods for a DPD deficiency test - as I had CMF 14 years ago it was assumed I was producing that enzyme, so they didn’t initially test. HFS and the big D have been my worst side effects especially on the week off. BUT the second dose reduction did improve the HFS in cycle 3. My team say it is not usual to have this level of toxicity so early on and that HFS usually kicks in after several cycles. However I know from you ladies that that’s not always the case. Scan on the 15th to see if it’s working to keep the cancer stable but I’m scared that the dose reduction will impact of the efficiency of the drug....plus if I’m struggling with this drug how on earth will I cope with something more toxic! I know I’m not alone with those fears....
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Karen, I'm on 2000/day (1000 am + pm) and 7/7. I've been stable for 27 mo on this drug. I know that we're all different, but perhaps you'll be fine with this reduction. Hoping so!!!
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Hi, Folks,
Have been a long time lurker on this thread but active on a lot of others, so some of you will know me.
Question about xeloda pricing and medicare. I am on regular medicare (not Medicare Advantage) with Part D coverage. My doc is considering putting me on xeloda. I know the whole scheme of payment for these expensive drugs under Part D. But I'm curious if any of you are on the generic form of xeloda -- I know at least one company, Teva, distributes it in the US. If you are on generic, what does it cost you per month?
Thanks for any info that you can provide.
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bevjen, I won’t be much help because my xeloda is free to me. My Alabama breast cancer Medicaid pays for it, but I’m on the generic xeloda and it’s called capecitabine. That may be one form of generic to look into for pricing
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Karen, after two dose reductions I am on 2500 per day, 14 on/7 off. I tolerate this dosage fairly well now and am happy to stay here. I have my next scan the 14th so we shall see if it is still as effective as the 3500 dose which did well for me. We will have scanxiety together!
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BevJen, I am also on capecitabine and have been from inception of this treatment. I'm on Medicare with Part D (I think). It appears that the billed monthly cost of the drug exceeds $3,000, but I pay only a small deductible in January of each year.
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Thanks for the support Lynne and IntoLight. I had noticed both of you posting your dosages etc. but the reminder was good to see!
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BevJen...I am also on Capecitabiine. I am on Medicare and Medicaid. But your onc could request a coupon from the company and in my case it is free.
Those coupons seem to be available to everyone though, since I have never heard of anyone in my area who had to pay a co-pay for it.
The actual price is $8,500 per bottle.
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Has anyone used GoodRX to get discounts on their meds? My insurance covers mine but the GoodRX website shows a lot lower prices than what you guys are saying but I'm unsure how it works.
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Twiggy, thank you for sharing that about good rx. My meds are covered but your post is great because I had no idea it might be available through a regular pharmacy and I’m shocked to see a price of only $70 at my local grocery store. My mind is blown!
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