All about Xeloda
Comments
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Here is the study about Celebrex helping Xeloda side effects...it can also kill stem cells.
https://ascopubs.org/doi/abs/10.1200/JCO.2016.34.15_suppl.e15046
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Jojo, I don't see that article on this link. I see an article about Xeloda and Celebrex and its effects on colorectal cancer?
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Girls, Since I recently started Xeloda I'm still gathering research. My ONC told me that the most important thing is to make sure your dose's are 12 hours apart. She also said it doesn't have to be take with a full meal. For instance in the morning she said you could take it with just a banana or some toast and for the evening you could delay your desert and take it with that.
Is this the way that you understand this protocol?
Good News I'm on my first cycle and no SE. I know they are accumulative but I'm fortunate so far
God Bless
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Snooky, I usually do my morning around 4-5 am, then at dinner around 3. So maybe 10 hours between my doses.
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I was told 10-12 hours apart and to have a high-protein meal or snack for the best efficacy.
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Goldie and Denny Thanks for your replies
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Does anyone have any tips for toenails? Mine look so unhappy. They're not sore but they look like the want to fall off.
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Just be gentle with them and protect them from the sun. Andrule out any infection.
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I was told to keep dark nail polish on them so, this 65yr old grandma, is sporting black polish! haha
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I was told to not polish them since they need oxygen. My podiatrist told me to use Tea Tree Oil on the cuticles and under the nails. If the nails get sore, use Betadine instead.
My right big toenail gets sore often, so I use Betadine every morning.
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Thank you ladies. I was told to keep polish on my nails when I was early stage but haven't bothered this time. I wear closed in shoes most of the time seeing as my feet are so ugly at the moment. My mum gave me some tea tree spray, I'll try that. Good point about infection too, I'll keep an eye on them.
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Geesh such contradicting info. Needing oxygen makes since. What type of infection are you getting? Is it fungus? Can you soak in apple cider vineger (with the mother in it)
Thanks Denny
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Snooky, I put ACV with the Mother in one of my used syringes and shoot it under my toenails. I tried regular ACV and it didn't seem to work at all. I do think it's a fungus and not an infection. My big toenails are barely attached, as I neglected them for awhile. The same can happen to the fingernails.
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Hello ladies,
Round 2 week 1 of Xeloda. SE are manageable. I do get pins and needles about 20 minutes after taking Xeloda. It is mild and goes away and is not every time 🤪 my local MO said he has never had a patient experience that symptom.
I now have a brown “freckle” on 2 of my my fingertips. Wonder if that will increase. Nausea and fatigue set in on week 2 last time. I have low wbc, rbc and platelets But I manage well all things considered. Are the SE cumulative like IV chemo?
After reading some notes here, I switched my anti inflammatory to 200 mg Celebrex twice a day. I have very bad arthritis already and have been on one or another anti inflammatory for more than 20 years. Celebrex does not give me the best results for pain but it should protect my stomach better than the old line I was on. Who knows. Maybe it will help Xeloda work better and prevent HFS. So far so good.
I am using 2 things religiously on my hands and feet. Polybalm on the nail beds/cuticles and camwell lotion on the skin. Plus I occasionally supplement and switch between bee balm for soothing hydration and amlactin for a little exfoliation.
One last thing. How do you respond or help people understand since my chemo is a pill and I’m not losing my hair and I look normal. Sometimes I get the feeling that people think it’s no big deal. So far I just remind them that it is a battle of the body and mind fighting cancer and I’m in it to win it.
Dee
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Although I have been on chemo for 17 1/2 years, I don't mind if people tell me that I look fine. On X, I just have to show them my bright red hands... They look more sore than they are. I do get the open cracks at my "finger bends", though.
I also wear closed toe shoes. Last summer, I bought some really nice memory foam sandals, which I can't wear now. Sighhhh
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Denny, thanks as always for your experience and input. I'm trying to figure out dosage vs side effects and what's safe versus what's comfortable. My oncologist wants to lower my dosage to control hand and foot, and we've done so a bit. It makes me a little nervous because I would obviously prefer hand and foot to progression. Do you mind my asking what dosage you're on and your general weight/height, etc? I know that our reactions are all different, but you've had such an incredible success to date!
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Joyner, I know you were asking Denny, but thought I would chime in. I've been on X for 5 years. I'm 5'9", 150 lbs and I take 5 pills a day, 500 mg ea. 14/7 schedule. I started with 7, that was too much and so was 6.
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I’ll chime in too. Coming up on two years with Madame X. I’m 5’2, 165 lbs thanks to cymbalta but it keeps the hip pain away. I have taken 2 pills per day for 18 months. My scans show good results and I’ve been bumped to every six months.
Yes I said 2 pills a day. One am, one pm. No breaks. I do ask for one for vacation and have had to take a couple weeks when HFS got bad.
I love my flexus slides. I wear them everywhere. SteinMart is where I found them.
I use a generic eucerin ointment now. I have lots of lotions and potions. I do use a blue mentholated gel and a cooling pad when my feet really burn. Flip flops or slides make my feet drier but it’s hot outside and hot feet bring on hot flashes.
I have new freckles too in weird places like my thumb. Derm said it was nothing to worry about.
My cuticles get really dry and tough. I use Burt’s bees lemon cuticle cream. And if it’s not TMI my rude bits get dry too. Not like a normal dry. I use replens.
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Joyner, I will chime in too. I am 5’4”, 145lbs, started the third time of X treatment since November 2018. Stared with 4 pills(500 mg each), increase gradually in 2.5 months to 8 pills per day now, 7 on 7 off. I am the lucky one that have not developed HFS yet! In my first two treatments with X 9 years ago during chemo and radiation treatments, I did not develop HFS either. I use Udder cream and sometimes with Cetaphil cream. Because I have not had HFS, so I like to walk bare foot on the carpet when I do indoor walking exercise.
My scan in May was stable, and the nextone is due on the 18th. I am keeping my fingers and toes crossed.
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This is so helpful, all...thanks! Others please chime in, if you care to.
I started with 6 total per day (3 pills AM and 3 PM...3000 total) 7 days on/7 off.
We dropped to 3 pills AM and 2 pills PM (2500 total). HFS continued at grade 2, so we're now at (2) 500s + (2) 150s [1300 mg total) AM and 2 pills (1000 mg) PM for a daily total of 2300/day. HFS still significant.
I've not found anything which seems to correct the HFS symptoms. Some make my hands feel better but don't really change anything. At 6 pills, my feet really burned, and it was somewhat uncomfortable to walk. At 2500, the foot pain pretty much dissipated and hasn't returned. Hands still uncomfortable, throbbing sometimes and peeling in places. They feel as though they are burned, and I've lost much feeling in my fingers and palms. It also feels as though I have a coat of fingernail polish or something on my palms. Just weird. A pain in the ass! But better than progression....
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I took a 1 mile walk yesterday. Woke up with red burning spots on both feet. First major SE. 😢
I am on 2300 mg twice a day. Do I call my MO and let them know about the burning feet? Not sure if I can mentally take reducing dosage yet since I am only on 2nd cycle.
Dee
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HFS is pretty hard to avoid or get rid of. It's caused by the drug leaching through your hands and feet. I think it took me months before it showed up. You can ease the drying and pain with lotions, but you can't get rid of it. So I think if it's working for you, as it has for me, I prefer to deal with it as opposed to the alternative. I want to squeeze every bit out of it I can. We only have so many options in treatments, I don't want to cut anything short.
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I agree with Goldie 110% about riding this horse as long as possible. My onc is ready to lower dosage for my comfort, but I'm hesitant as I don't want to blow through whatever is the effective period of Xeloda for me. I started in February of this year, so almost 8 mo for me. It's very interesting at what different dosages we all seem to be.
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I am 5'1", 160 pounds and am on 2,000 a day at one week on and one week off. I did start out at 2 weeks on, one off, but when the HFS flared up, my onc reduced it. No excuse for being overweight, besides I like my sweets. LOL
As I have often stated, I use Aquaphor at night, with silicone socks, and food service gloves on my hands. Really makes a difference. Tea tree oil on all nails, except for the big toe and next toe, on which I use Betadine around the nails since they sometimes get sore.
I spend the whole day on my computer since I have 4 internet stores, so when my feet burn, I just sit here with my feet on ice packs.
I have been on X with Herceptin for 20 months, and like Goldie said, there aren't a lot of options left for me, since this is my 9th chemo.
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Denny, can you go back to a treatment that you did well on and try it again? I had asked my MO about that, returning to X if other treatments fail me. Next for me will be Verzino (sp) with Faslodex.
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Goldie...I doubt it. When I had my recurrence, I tried Gemzar again, which did a great job on my liver mets. But it failed on my chest nodes.
I wonder about the Poziotinib that got rid of my chest nodes in 8 days. 2 pills a day really messed me up, but I would try 1 pill a day. However, out of several ladies who were on that clinical trial at the Hillman Cancer Center in Pittsburgh, PA, I was the sickest, but at least it worked quickly for me.
The other ladies didn't get as sick, but the chemo did not work for them. I sure hope they can improve it for eventual use.
Since my chest nodes changed properties, I might go on Lynparza next. I was actually approved for it, and got the $14,000 bottle of pills (I only paid $4 for them). I still have them but they are now expired.
But when my scan showed that I was NED, my onc put me on X and Herceptin instead.
Ugh for Faslodex..HATED those shots, which didn't work for me. But many ladies do very well on it.
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I'll jump in, too. I'm 5' and 102 pounds, and I'm taking two 500 pills both morning and night (2000 daily), one week on, one week off. I'm not sure if I count the cycles correctly—it feels easiest for me to count one week on and one week off as "one cycle", so right now I'm on Day 1 Off Cycle 7, 3 1/2 months. Like Denny, I use Aquaphor at night, but wear cotton socks and cotton gloves. During the day, I use Moo Cream (my silly nickname for Udderly Smooth!) after I wash my hands. So far I have no HFS.
As for other side effects, aside from massive fatigue that I work hard to resist on some days of my "ON" weeks, I feel a slight numbness and swelling on the side of my lower lip, that doesn't go away.
I would like to do whatever I can to protect my toenails and fingernails from loosening, etc. , so I'd like to ask some questions, as my onc has no understanding about this particular issue. She said what would cause that would be something like a lot of hiking up and down, while wearing hiking boots that bang against the big toe. For those of you who are using Tea Tree Oil, I would love some help with directions on the best way to use it. Does it come in a spray? I'm guessing the spray would already be "pre-mixed" to the correct and safe proportions, and do you just spray the whole nail making sure the whole cuticle got sprayed, too? So, when to use the spray? After a shower?, once a day, every day?, and does it matter if you put cream on over it, or should it dry before you put on cream or get dressed? What's the difference between Tea Tree Oil spray and Betadine spray? Is the purpose of the Tea Tree Oil to prevent infection, which is what would cause the nail to loosen? Or, is it too-tight shoes that cause friction and loosen the nail?
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Kendrasue, these are such good questions, and you're touching on some of my own questions. My fingernails are doing strange things: the cuticle seems to be getting longer and the nail bed shorter (or perhaps the "white" outer edge deeper) or whatever. I hadn't tried the Tea Tree oil but am also very interested in answers. I have bought some and will get on it. Thanks to all-
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Denny, I have not heard of most of those chemo drugs, must have to do with the Her2+? I did Faslodex with Xgeva in the beginning, it did not work for me either. Next it will be along with Verzenio and I will continue with the Xgeva. I don't mind the Faslodex shots, but I have to drive almost an hour and a half (one way) to get it! The Xgeva I just do myself.
Nails, I have mixed tea trea oil with coconut oil and rubbed on cuticles. I've used Vicks, rubbed on the nails and tried to get some under the nail, and ACV with the mother, in a syringe to get under the nail. Sometimes using all of these methods!
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does anyone get sick during their week off? I have been 5 rounds now and at the end of the week off I get Diarrhea, chills, and exhaustion
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