All about Xeloda
Comments
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Thanks ladies. This morning I really did feel like the sky was falling. Maybe it was just the shoes I wore on Sunday because the two blisters are in the exact same place on each foot. Ill know tomorrow when I show them to my MO. I do have some red skin in different places on my feet but no other blisters. I'll let you know. Thanks for your encouragement.💞
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Kendrasue, welcome. I see you are one who wants to be prepared for all possibilities. I do too; it makes me feel better because I have a plan in case things go wrong. But I go into it expecting to do just fine, and it usually works out that way! Expect the best but prepare for the worst. I agree with Moissy - don't assume it will be terrible.
As far as meals, in my experience, the first few cycles were the touchiest for the tum. My advice is to have meals that are easy on your stomach, nothing too challenging like high-fat or spicy. If you get a hint that diarrhea may happen, go to the BRAT diet: Bananas, rice (white basmati is nice), applesauce (no added sugar), toast, plus yogurt. Plain sautéed chicken breast or eggs are gentle protein sources. My sense is that the body adjusts to the med and then ypu can be freer with your food choices after a few cycles. For overall health and drug tolerance, I like to be mindful of gut health in general, you know, the gut biome. So, whole grains, fruit/veg, lean protein, nuts, the usual. Fermented foods are supposed to be good (but don't do anything radical when starting X). Also pineapple and papaya have digestive enzymes.
Personally, I am faithful with the daily lotion, but don't bother with socks and gloves over it. I vote for proactive moisturizing. Avoid heat, pressure, and friction on hands and feet. I still dance! By all means, garden, just wear gardening gloves and be mindful of when you might get help with certain tasks. I do use sun-protective clothing, including SPF gloves for driving. (Brand is Coolibar.)
ShetlandPony, 2 years on Xeloda
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Welcome, Kendrasue. Shetland gives great advice. For my own part, I never experienced any nausea at all. Except for some HFS, which took a while to appear (as in Grannax's case), I have felt only some fatigue and nothing else. I moisturize at night and wear nitrile (I think) gloves, but they're the kind you get in the box at Costco and look like "doctor" gloves. I've been on X since January (3000/day, 7 days on and 7 days off) but has my dosage reduced to 2500 last month because HFS was at Grade 2 and causing issues. Good luck!
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Hello all,
Well I got my new blood panel. Not good. As I previously posted my last one was confusing as all the numbers including AlkPhos were normal but the CA 27 had jumped 400 points. Strange. So did another cycle of X and this is the result. AlkPhos up to 126 from previous two months going lower (87 and last 77). Ast up from 39 to 77.
Looks like X had a short run. I haven't heard from my onc yet on the TM's but given the above I am not hopeful for any good news.
I will most likely have to do another Pet/CT to find out what's going on. He has said that after this I will have to move on to intravenous chemo. I am so bummed. I don't know why my cancer doesn't seem to respond very well to ANYTHING. Estrogen positive but the anti estrogens didn't work at all. Ibrance no. Verzenio almost killed me (for real). Now the drug that I hoped would be the winner did good for two months but now appears to be failing.
I am researching the various chemos to see what the side effects are etc.
Chats
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Thank you all for your kind welcome and good wishes. It's such a wonderfully friendly and helpful community.
Moissy, ShetlandPony, and JoynerL, thank you so much for the fabulous information and great encouragement. Listening to you, and going into this with a very positive attitude.
My first Xeloda delivery arrived this morning, and I'm so glad my specialty pharmacy gave me a heads up—it arrived in a "cooler" arrangement of two boxes filled with ice packs, with labels all over the place saying "refrigerate"! Luckily, I was told in advance to remove the pill bottle from the cooler immediately and store it at room temperature. I'll examine that pill bottle and what looked like a cup later on today. I haven't yet opened the "kit", either. I'm hoping the cookbook that Xeloda puts out is in it. I tried to order it in advance, but had a heck of a time finding any mention of it anywhere. xo
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What cookbook?? Sending it in a cooler seems totally odd. Mine sits in the pill container on my bathroom counter. Tomorrow is the last day of a seven-day cycle. I'm looking forward to my seven days off. By the way, Kendrasue, I do not have worse side effects during my week off, though apparently some people do.
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JoynerL, I read in two different places that Xeloda provided a cookbook for chemo patients. One of those sources said it was included in Xeloda's Welcome Package. However, I looked back in my notes and that info was from 2013. It's possible that has been discontinued. That could be why I couldn't find any mention of it currently. I'll let you know what I find in my Xeloda kit when I open it.
I thought shipping it in a cooler was odd, too, so I asked about it when I was talking to my specialty pharmacy. They said it's being shipped on ice in a cooler for the summer months, and that's basically only for around 24 hours, but should be removed and stored in room temperature when it arrives.
Thanks for letting me know things are not worse for you on the second week, even though that's not the case for some others. Very encouraging. It looks like you begin your new cycles on Friday—that's the day I chose to begin, too.
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Kendrasue,
re. your question of June 10 about HFS: Personally, I avoided pools *completely*, even tho I've got one next door and love 'em. The chlorine was very irritating to my skin in general, and feet in particular. Not to mention, many have a rough/scrapey bottom. ugh. The water/chlorine meant I took fewer showers than usual, also.
When outside wearing regular shoes, I wore soft, cushy, socks ALWAYS and stayed off my feet as much as possible. Indoors, I wore sheepskin or soft, cushy slippers.
I also didn't use skin oils on the bottom of my feet as softening them up seemed to just make the problem worse.
IOW, I kept my feet as dry as possible at all times, and as protected by soft fabrics as much as possible. Once I started doing that, my feet healed completely after a really rough start.
Best of luck to you with this.
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I saw my MO yesterday. She thinks the blisters are a combination of HFS and wearing the wrong shoes ( that rubbed my feet)all day. So I won't do that again. So, I have these big puffy blisters on each foot. Do any of you burst them so they will heal faster, like I would do with a normal blister? My labs were good so I don't think I'm at risk for infection. Why does HFS happen with X? Some have said it burns the skin from the inside out, some that it dries out the skin and it cracks. The only shoes I have right now that don't touch the blisters are flip flops. That's fine with me, I wear flip flops all summer anyway. I just don't want anything touching the tender blister right now. Even a sock. I think an ice pack would feel good or a cream that feels cool on my foot.
Also, my PET won't be until July 12, results/appointment July 15. I'm bumbed about that. But, it was insurance driven, mine won't cover till at least 3 months. So I wait.
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Oh, Chats...maybe you're wrong and the blood work isn't an indication of X failing. Good luck. Let us know when you talk to your onc.
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Chats - I'm so sorry that your run on Xeloda may be ending. It's one of the chemos that can last a long time and be tolerated reasonably well. My first PET/CT at 3months on Xeloda showed some cancer regression, but the 6 month scan showed my first liver lesion. It's so disappointing when treatments fail. I hope that your blood results are wrong and that you can continue on Xeloda. Hugs! Theresa
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Joyner and Theresa thank you for the good thoughts.
Well, it turns out that my ca 27 29 jumped up 1000 points to 2690. My alk phos is 106 which isn't too awful but it rose from 77. Everything else is normal. I had a small lesion on the last pet on my liver that had not changed from the previous pet. I keep poking around under my right rib cage but feel no pain. The onc said the liver is not enlarged. I have read on other posts that X can do in the liver lesion but the bone mets keep growing. I think that may be my issue.
I am having the pet/ct to find out what is going on. If I were a betting person I would say it's bone mets progressing because I have been complaining about pelvic area pain for several weeks. It was coming and going but seems to have gotten worse. That's where the bulk of my cancer is, lytic, so the little bastards are at the all-you-can-eat buffet and stuffing their nasty selves.
I rarely take pain pills because I don't want to load up my liver with more drugs. But I have had to do so the last two nights because I am unable to sleep due to the discomfort in my pelvic area. I know I also have degenerative disc stuff in my lower back and I have had back pain for that reason for years. I assume the mets are making that situation worse, maybe pressing on a nerve or something.
I will let you all know what the pet/ct shows. Boy, I hope it's not too awful. In any case it looks like I only got two good months out of X and it was so easy for me. I was on a low dose and had no side effects. Argh!!
Chats
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Hi, Oneandun. Thank you for all the good information. I was wondering, when you say you didn't use skin oils on the bottom of your feet, are you talking about the skin creams with urea, and moisturizers like Aquaphor, etc.? Thank you so much for your kind wishes.
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Hello, Grannax. I've been happily following your good progress on Xeloda, after the rough spot at the very beginning, and you have been my role model. So positive, and singing Xeloda's praises! I'm sorry to hear about your blisters, and on both feet, yet. I think your flip flops are definitely the answer—my oncologist did tell me not to wear shoes "too confining", to prevent blisters. This is why I'm ordering Sketchers sandals, which are pretty much flip flops, I think. So, I'm beginning Xeloda tomorrow morning. Positive attitude.
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Grannax-the Urea 40% dried my feet out so much that they got a lot worse. I am back on Aquaphor only and it works the best for me.
Kendra-welcome and you sure have been taking notes! LOL. I bought great Memory foam sandals last year with Velcro straps, but his year my big toenails look ugly, so I am now into Skechers sneakers.
It wouldn't hurt to use Aquaphor now or at least Udderly Smooth. After 15 months of Xeloda, the best thing for me is Aquaphor on my feet at night with silicone socks, and also on my hands with food service gloves. I also apply Aquaphor on my feet 4 times a day, Udderly on my hands during the day.
I don't get nausea every time, so I don't need Zofran. Once in awhile my tummy feels slightly urpy and I like Emetrol OTC syrup.
Don't worry about foods with Folate....I can even take vitamins with Folate. Just don't take an extra Folate supplement. Your meals or snacks should be high in protein for best efficacy of the Xeloda, and take it a half hour after your meal or snack.
I use Betadine on my right big toenail since it used to get sore and infected. I spray it with Betadine twice a day. Tea Tree oil is gentle and I use it on all of my toenails 4 times a day when I reapply my Aquaphor. It is a natural antiseptic.
The chlorine in your pool might hurt your skin, so that is something to be considered (sorry).
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Good luck chatsworth!
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I also got my X delivered last summer in a cute cooler. Than was when UPS just dropped it off. But the next month, then left the X at my neighbor's house, which is not good.
So now I sign for it to be sure that it comes to me...no cooler required.
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I used an ice pack on my feet yesterday. Awww relief. Sometimes the simplest things are the best. I did do some reading on HFS. It seems that X can escape into the capillaries in the feet and hands if the area has had too much friction. Makes sense. Also, it said keep your feet from getting hot. So, flip flops keep my feet from getting sweaty hot, that works. Using cortisone cream can help with the inflammation. Or other topical pain relief ointments. It did mention taking B6.
I don't like the UREA cream either. I have 40%. It's too thick and yucky. I'm going to use some other creams I have but mostly I'm using my ice pack. 💞
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Grannax-how about getting memory foam sandals that are like your flip-flops? I have crocs flip-flops but they really hurt my feet because of the hard soles.
My silicone socks got a ripped toe after 2 weeks, so now I have silicone ballet-style top caps, then put the socks over those. LOL. What we don't go through....
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Chats, good luck and let us know.
Denny, I didn't like the urea either until I got the Actrac-tain, it didn't feel drying at all to me, and it must have something in it as it even felt a bit "greasy". I think the lotions have an effect on the silicone footies and that is why they tear. I haven't had that problem with the toesy ones I have, but I know you said you couldn't do those.
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Denny, do you have an on-line source for tea tree oil that you can share? Thanks!
Joyner, I examined the kit that arrived with my first Xeloda delivery, and I was disappointed. Not one word about Xeloda! It was filled with give-aways from the specialty pharmacy: water bottle, pad of stick-it notes, an insulated little tote bag, and an ice pack—all imprinted with the pharmacy's name.
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Kendra-I just get the Tea-Tree oil at WalMart.
Goldie-I tried the Actrac for a few weeks....put that on my right foot and Aquaphor on my left-LOL. The left foot with Aquaphor was better.
Got my Herceptin today and my nurse told me that they are getting all new chemo chairs with electric ability to recline (the ones we now have are impossible to recline without help from the nurse). And they even have massaging ! One guy donated all of them, which is probably about 60 chairs. Nice of him!
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Kendrasue
I put absolutely *no* moisturizer of any sort on the bottom of my feet.
Here's what happened:
About week 3 or 4 (?), my feet suddenly got so blistered and messed up that I couldn't walk one step w/o pain.
At that point, I stayed off them as much as possible for the next few days. When they started to heal (ie. peal), I put a bit of lotion and oils on 'em and the ensuing tenderness/softness didn't work out for me. I could tell they were gonna get messed up again.
I decided to let 'em harden/toughen up (like they had been *before* the HFS mess) and that worked out Very.Well. for me- as long as I "protected my feet" with soft socks and or/soft slippers. That meant NO skin creams of any sort on the bottoms of my feet. It also meant not getting them overly wet by hanging out in water more than absolutely necessary. My feet have been FINE since then.
I stopped taking chemo about a month ago but am still wearing socks when I go out (even tho it's horrid hot now) and soft slippers indoors- cuz I don't want to even *Chance* that this might happen again. Hoping in a month or so I'll get a sign that I can go back to normal shoes, no socks, etc.
I also had the "fingernails feel like they're falling off" thang. Again, learned to keep my hands out of water. That meant using long-handled brushes to wash dishes, and using the dishwasher MUCH more than I ever have in my entire life. I did use hand cream.
Reading the posts here, it seems I'm one of the few who made it a point to: 1) NOT use creams on my feet and 2) stay the heck away from water - as much as possible!
But that's what worked for me!
Dang. Wish you good luck in figuring out what works for you!
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oneandun. My blisters have healed, too. I didn't use cream either. I used ice pack and soft slippers at home, flip flops when I went out. I'm going to get some soft flip flops with more cushioned sole. The trick that worked for me was to keep my feet from getting hot and sweaty. I live in Texas, we wear flip flops year round. LOL
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Hello again,
Well I am once again on the magical ( not so magical) mystery tour. As I mentioned earlier I was in a lot of pain in my pelvis down my legs and it got worse until I was in pain from the back of my neck to my ankles and all down my arms. I was taking hydrocodone for a few days just to get some relief. I had chills for two nights and then Friday night went to bed in a long sleeved t shirt and jammie bottoms. Woke up in the middle of the night and my t shirt was so wet from sweat I had to take it off. Woke up Sat morning and Poof the pain was gone. Back to the regularly scheduled programming of some low back pain and upper back muscle pain when I do a lot of bending stuff.
Now the curious thing is that I went through the exact same pain scenario the day after I stopped taking Verzenio on Dec. 22. Woke up in the middle of the night with severe pain from the back of my neck to my feet. That's when I requested some pain meds from the onc and got the hydrocodone. Pain lasted for about a week and a half.
My TMs on January 2 had risen from 417 to 740. Went on a washout and then started to take X and my TM's rose again on 2/2 to 1200, then started to level off. On 4/10 they were 1150 then rising again on 5/8 to 1590 .Had same scenario of pain starting on 5/8.
Then TMs rose on 6/10 to 2690.This time the pain began on 6/8.
There seems to be a pattern but I am completely unable to figure out what it is. I could understand if the pattern was pain and rising TM's with no relief. To me that would mean bone mets going crazy. But the pain only lasts for a short period - a week or so - then poof it's gone.
Sorry for the long story but I would like to know if anyone has had pain like this. I have my Pet/CT scheduled for Wednesday unless they can slot me in earlier. I was certain they were going to find massive progression but now I am completely perplexed and all I can do is hope that this is not the case and that the pain is an indication of maybe dying cells?
I can't talk to my onc about this because he poo poos my theories. It's all protocol for him. So I am grateful to be able to talk to those who understand what we are all going through and are more open minded.
Chats
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Chatsworthgirl, maybe the rising TMs and the pain were tumor flare? Dying cancer cells are shed so the TM goes up, and the tumors swell before they shrink, causing pain. I can tell you that when I started Xeloda I had great huge pain in my liver for a few days as the drug started kicking cancer ass. I’m bothered that you can’t talk to your onc. If he doesn’t like your theories let him offer one of his own. Can you see someone else?
Grannax2, yup, the Xeloda toxins come out in sweat, and people have many sweat glands on the palms of hands and soles of feet. Cooling is recommended. I suggest that you sunscreen your exposed feet. I have some toe nail lifting from X, and when I did some research it said that sun exposure can worsen the condition of lifted nails. On the rare occasion that I expose my toes, I use a mineral sunsceeen (white stuff)right on the nails.
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Shetland,
I would be so jazzed if the pain was, in fact, tumor flare. I know that the Verzenio was working at first and my numbers were going down significantly - but the side effects were so fierce and almost deadly that I had to stop. So how about the theory that the sudden jump in TMs at the point where I stopped were a positive reflection of the Verzenio working??? Same with X. I would have stayed on V if the side effects hadn't been so lethal. X was so easy. I was hoping this would be my ticket to ride for a good while.
When I was 11 years old, we were at Coney Island and my brother who was 15 wanted to ride the Cyclone, the most fearsome roller coaster around. In those days they didn't have age limits so my parents allowed him to go and take me. I swear they were out to get me. LOL. When we reached the top of the first climb my brother got down under the handle bar that crossed over the seat and stuffed himself down under the front of the car. I was sitting and when the car started down and picked up enormous speed it pulled me to an upright standing position. I had to hang on to the bar with every bit of strength I had the entire ride because I knew even than that the force of that pull was enough to suck me right out of the car. I am absolutely certain that I would have died that day if I hadn't been able to hang on.
So having ridden the most fearsome roller coaster when I was a little girl, I am determined now as a big girl to hang on to the handle bar and ride this fearsome one.
Chats
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Shetland,
In regard to my onc. I tried another one that was worse and went back to this guy. I found a clinical trial that he never mentioned that started in March at Mt. Sinai in New York. They found that injecting immune booster into areas of cancer cells caused the immune system to produce the killers and got people into remission. I intend to bring this up at my next appt.
I am tired of these guys who just don't really look for something other than the standard protocol. I had to ask for Foundation One test and when they sent in my blood apparently the F1 people screwed it up so I never got a full report. I will have to do it again.!!
I started out at St. Joseph's and the Disney Cancer Center in Burbank. The onc there was not so great. Everything was drama with that one. I got tired of driving so far so I am now at West Hills Hospital in West Hills, CA. A much shorter distance from my house. So there is that. I will not go to UCLA because that is extremely far and I was not impressed with an onc I saw there for a second opinion.
I just wish I could have one that is truly interested in working on behalf of his patients and looking for trials etc. like some of the posters on these board. Oh well...
Chats
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Chats, most ONCS, even the good ones, won't look for trials for you. You kinda have to do that research on your own. Unless it's affiliated with them, or their facility, or a really famous one, they aren't really aware of all of them. I was pretty disappointed by that myself.
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Thanks Shetland, I'm glad I'm on the right track. 💞
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