All about Xeloda
Comments
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Wandering, my eating schedule is similar to Karen's. I breakfast and take my first pills about 9:00 and eat dinner by 7:00. I prefer to eat first then take the pills. I have GERD so I also take Prilosec before noon which is tricky since I can't take it within 2 hours of Xeloda. I sometimes just eat toast or a banana for breakfast and that seems to work fine. Best of luck!
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Wandering, I have had some digestive issues if I don't have enough in my stomach so, if possible, I would try to bump that up a bit. Perhaps a piece of fruit?
I'm fortunate as the timing works well for me. As an early riser I eat breakfast about 6:30 AM and then dinner is between 6:30 and 7:00 PM . But I hear you on the pills Karen. I have two more days left in this cycle and am eagerly looking forward to the break week. It's something about being chained to a schedule that I find off putting. That and the copious amount of water I need to drink with the pills. Not a big water drinker... coffee yes, wine yes, water... ugh.
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illimae: Thanks for the reply. I don't see him again for 3 weeks but think I will put a call into the phone nurse who can check with him.
I noticed you live in Houston. Hope you managed the weather last month. I lived there my first 43 years and can relate the problems. I turned my water off at the house and drained the pipes when the forecast was for really cold weather. We are in Montana and had minus 26 at night for a while - no problems - sending lots of love to our builder. We do have power outages about 3 to 4 times per year and are investing in a generator for the house. Wish my relatives in Houston would do the same but they are hard headed and will not listen to me - just like to complain when the power is out i.e. hurricanes. Pretty cheap insurance rather than throwing out hundreds of dollars of food Oh well, we are in rural Montana and don't know much.
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I used to worry about being exactly 12 hours apart- I also sleep until 8 and have breakfast at 8:30 and then the food has to be partially digested and then trying to put off dinner until 8:30 was hard. then someone mentioned that it can be 10-12 hours and that's what I do. I also set an alarm for 25 min after the meal so it is partially digested from her suggestion. this works well for me not forgetting. I really enjoy the week off- the remembering and timing even though is not that hard feels like a bit of a burden.
Second Moderna on Friday- feel worried re side effects, can't wait for it to be over.
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Finishing my fifth cycle. Definitely noticed I'm more tired and spend more time napping than I used to. The burning and tingling I felt in hands and feet at first has gone away. If I feel it now, I just keep something cool nearby (a cold drink in my hands, for example) to draw the heat out. I try to do my short workout at the 11 hour mark after my morning dose when the Xeloda is at its lowest concentration in my system.
It's really hard to drink enough water with the increased stomach sensitivity. Sometimes the water causes an immediate bout of the runs, and sometimes it makes me burpy, and barfy. I also had some episodes of depression that came out of nowhere. But if I do drink more water, I have less fatigue and constipation, which is also something that has gotten worse on Xeloda.
On the plus side, the suspected lymphedema has resolved. My cancer breast, which I still have, has become smaller and softer and my TMs have trended down each time. I think the next scan could be a good one for me. And I become eligible for the CV-19 vaccine at the end of this month. I was almost sure I wouldn't survive the pandemic. Now I'm almost certain that I will.
Welcome to the new people. This medication was not as hard as I thought it would be. I hope it works well for you.
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We are supposed to eat a high protein meal or snack a half hour before taking the pills, for best efficacy. So yogurt or some cheese and crackers, cottage cheese, etc.
And 10 hours apart is fine.
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Oh geez, haven’t even made it to cycle three and the HFS is rearing it’s head. My heels are hurting! No blister showing but it feels like it is starting. This is where I had trouble the first time... darn.
Any advice? I am using the urea cream religiously but noticed the tenderness in my feet almost immediately when I started again. I assume it is something that stays with us. I am on a reduced dose and am terrified to go lower with new liver mets. Shoot, shoot, shoot! And the problem is, I have a dog so walking isn’t an option
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Hey, Sadiesservant (is your dog named Sadie?) - do you have those socks with the icy inserts? They helped me when my feet felt like they were on fire. I also schedule physical activity before taking my pills, when the concentration of the meds in my system is lowest, and I kept my feet and hands elevated when the tingling and burning hit. The lotions were good, but not as effective as the measures I took to avoid blood pooling in my hands and feet. The 7 on and 7 off schedule is said to help reduce side effects. I'm also an early riser, so the 12 hour separation of doses is pretty easy for me most days. Hope you can avoid the dreaded HFS.
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Sadiesservant,I have found aquaphor or even straight Vaseline to be better then urea cream or udderly smooth cream.
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Sadie, I just finished Cycle 3 and my HFS is so bad that my oncologist wants me to take ANTOHER week off after my normal week off. My feet are bright red, and my hands are brittle and cracking. I am using those socks I think Nine Twelve just referred to - you stick the inserts in the freezer and then into the socks, and then put your feet up. Those help alot. I am also using the Gel socks that were recommended when i joined this group and I love those. I cover my feet in lotion and then slip the socks on. I just can't seem to find anything to help my hands - I have tried lotions and gloves and nothing is really doing the trick.
My TM's are also trending down and I am having a scan next Thursday, even thought I have only had three cycles, so we will see. My breathing is better - I am totally off of my oxygen, but I still have a ways to go.... so I am hesitant to delay starting cycle 4 and almost feel like I should just deal with the HFS. Activity hasn't been a huge issue because since I can't breathe, I cant' exercise, but as I get better hopefully that will change..... and then I suppose it will become a bigger issue for me.
As far as eating - my issue is in the morning. I have never been able to eat breakfast - I am just not hungry, so I am trying to force something down around 9am every morning. Usually applesauce with Vitamin C stirred into it. Then at night I take it either before or after dinner - between 7 and 9. I don't seem to have stomach issues, but I do have a hard time drinking all of the water that we are supposed to.
I do not have my energy back.... I am worried it's going to get worse.......
Hang in there, everybody.....
XO
Andi
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Andi67- i don’t know what dose you are on, but, by 3 months I could barely hobble to the bathroom- a dose decrease from 2500 to 2000 resolved that. My MO says that if it is working a dose change rarely makes a difference in efficacy.Also USC uses only 2000 per day. Sounds like a it is working - hope you can resolve your HFS.
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Thanks everyone. Yes, Sadie is my collie. She keeps me moving, although, to be honest, I think she would be happy with a bit less walking. Ha! She likes her food so walking is not optional.
The thing is, I’m on my week off so timing of my exercise is not an issue. I find it interesting that this is precisely the place I had trouble with in 2017. I guess the damage is somewhat permanent. It’s also a bit weird in that most people have more trouble with the pads of their feet (I think) whereas for me, it’s the heels every time. I did notice increased sensitivity of my finger tips and feet pretty much right away once I started Xeloda, even on this reduced dose.
I don’t have the gel socks - will look for them. I did ice my feet last night which helped. I am just a bit freaked as my MO has already indicated my chemo options are limited. Don’t want to mess with dosage unless absolutely necessary. Andi, I scan after three cycles as well - we want to check to be sure it’s working as I’ve been on this before and we weren’t convinced it was effective
Thanks again!
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Andi I do feel your pain... I also have had major SEs after only cycle 2 with a small dosage reduction. Rash worse on face, neck and now hands. The big D far worse as is the nausea and the meds for those seem to cancel each other out. HFS terrible 😞 too.
SO I see my MO on Wed and we'll discuss next steps. She led me to believe initially that this treatment is perfectly doable. Definitely not so for me on a 3300mg per day dose! I hope you can have a similar chat with your team!0 -
Oh Karen... I think you and I have hiking/walking in common so sitting on our duffs to avoid HFS is not exactly realistic. I laughed to myself when the pharmacist at the Cancer Agency said I needed to get others to do dishes and any heavy work for me. Ha! I’m single, have a dog and live in a big old housewith my 90 year old mother. Who exactly would the “others” be?
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Sadie-urea made my hands and feet much worse. The literature that my onc gave me suggested Urea 40% and Ammonium Lactate and I got soooo much worse. I quit those and went exclusively to Aquaphor and won't use anything else.
When my feet start to feel tender somewhere, I put on bandaids to cushion it. Then invariably the skin will crack open, so I used Bacitracin and bandaids.
Andi67-I use Aquaphor and food service gloves at night and also apply Aquaphor through the day.
Question---does anyone get horribly itchy toes???? Mine get sooo bad but if I rub them to try to ease the itch, I get blisters and my toes swell up.
The area under my big toenails and the toes beside the big ones, gets burgundy and then the itching starts. This is making me crazy and right now I have my feet on an ice pack pad.
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Denny, I get hives from sensitive skin and the only thing I've found to calm the itch is anti-histamines. Don't know if you're allowed to take them, but they might help?
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nine twelve...thanks. I did take Benadryl last night. And today I put on Poison Ivy meds. My specialty pharmacist told me that the folic acid in foods won't be a problem.
But I have been eating a large salad every day for lunch and I am wondering if that is the problem. Trying for a healthy diet....
Sitting here with ice packs on my feet and going to cut out the salads for awhile.
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I hope the ice packs bring relief, Denny. One thing I've wondered about, is whether a prior exposure to chemo will make someone more likely to experience HFS. I guess I'm looking for reasons as to why I've been lucky so far with that. (This is my first chemo.)
My SE's right now are major fatigue, lack of appetite, with food tasting gross, and some gastric issues, mainly diarrhea. My first scan on this protocol will come up in April. Hoping we all get good results with Mme X.
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I just started this drug on Sunday and I am wondering if it is too soon to be having ses, because I am experiencing some weird stuff. Most bothersome is not being able to sleep at night. I lay there for an hour or more before drifting off and then get big time night sweats and really bad dreams. Anyone else experiencing this? I see "trouble sleeping" listed on WebMd, so maybe this is not so unusual? Feeling light headed/dizzy is also listed. My experience is more like it takes a micro second for my brain to catch up to what my eyes are looking at. My thinking feels slightly off. The big rush of D first thing is the morning (and maybe once more during the day) is tolerable so far and more in keeping with what I expected, though maybe not this soon.
Wandering, I see that you and I are about the same size and both of us are starting at 3000mg a day. That was good to hear as both DH and I thought my mo said I would start at 2500mg, but the spec pharm and cancer center both confirmed her notes said 300mg. SWAG (scientific wild ass guess) is we will both be getting a dose reduction next time around.
Andie67, I haven't "seen" you since way back when on the bone mets thread, so glad we are both still here! I'm like you, I've NEVER been a breakfast eater and am having a hard time stuffing something down 1st thing in the morning before that first dose. I'm sorry to hear Mdme X is giving you such a hard time with HFS and low energy. I hope you and your mo are able to find a dosing scheme that works better for you. It's so good to hear that your TMs are down and your breathing has improved. Breathing is good!
Ninetwelve, Wonderful to see you again too! We were both dx'd de novo at around the same time. Hope your upcoming scan shows great results on this drug. And thanks for the tip on water helping with some of the ses. I hadn't heard that before.
Nkb, If I remember right you were starting A/A as I was leaving for Piqray. Good to "see" you again too! Fingers crossed that 2nd dose of COVID vaccine will be uneventful.
Thanks to all for tips on treating HFS when it comes along. If it is any consolation I read a study when researching Xeloda that bad HFS corresponds to a good response to this drug. If anyone wants I can try to find the aricle again.
Sorry for the long post, seems D is affecting both ends of me this am, ha ha!
Best wishes to everyone,
Jo
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Jobur: I am just now completing my first week on Xeloda. I haven't had my appointment with the oncologist since I started (next appointment March 31). I too have trouble sleeping but I always have. I take 5mg of Melatonin before I go to bed. If I wake up during the night and cannot go back to sleep sometimes I take another one. You might check with your doctor if that's OK for you. I am gearing up for jaw surgery. My oral surgeon wants me to increase my protein intake. I have started drinking a protein drink. This might be something you could consider as your breakfast. Lots of protein (30g per serving) and about 160 calories. I haven't tried the chocolate but want to next trip to the grocery. I haven't had any real side effects but I just got off Taxotere about a month ago. I did really well on that for about 4 months but the 5th month almost (literally) killed me. That put me in the hospital for about a week and they took me off Taxotere and put me on Xeloda. I am hoping to do well with the changes. Our summers are really short and we would like to make some trips and play. This winter has been very hard medically.
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Hi Jobur. I haven't noticed issues sleeping beyond my typical middle age stuff. (Honestly, it's amazing how many problems I think I can solve in the middle of the night!) The lightheaded/woozy feeling and fatigue is definitely hitting me but I'm not sure if that's the Xeloda or if it's the liver mets as I'm coming to the end of my break week following cycle two so wouldn't expect it to be Madame X causing the problems.
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some of my side effects are now annoyingly occurring on my week off. Diarrhea hits the first day off (I take Imodium) with lots of abdominal pain (apparently xeloda has given me colitis although I’m actually constipated when I am taking the drug which doesn’t help my diverticulo🤷♀️)feet start to crack where the skin is the driest, fingertips around the nail bed starts hurting and not being able to sleep hits on the 5th night off. My best day in the 2 week period (1 week on 1week off) is the first and second day on xeloda
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So I saw my MO today and explained that the SEs from Madame X were intolerable for me in cycle 2. FYI newbies, the big D, nausea, HFS, itchy rash over face chest back and hands to name a few. She was pretty surprised and said most people tolerate Xeloda well....there was a bit of me about to point her to this thread where many say otherwise initially. She suggested either taking the same dose 3300mg for me, over only 10 days or 3000mg over 14 days. I’ve opted for 10 days as the first 7 have been the most doable. We’ll see how that goes!
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ninetwelve-thanks. Last night I didn't have as much itchiness as I did the previous day. Amazing that a large salad can cause itchy toes??????
For the ladies who have light-headedness.....Xeloda lowers my BP. So I had to have my BP meds reduced. Mine is typically high, but went way too low after I took my pills.
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Oh dear... my BP is always on the low side... This should be interesting...
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So since I finally figured out why my feet have been so bad lately with infected toenails and being horribly itchy.... it IS the Folate in the foods that I eat. Ironically a healthy and almost-vegetarian diet is the worst possible diet.
The foods highest in Folate are...legumes, asparagus, eggs, leafy greens, beets, citrus fruits, brussels sprouts, broccoli, nuts and seeds, beef liver, wheat germ, papaya, bananas, avocado, fortified grains.
And I do eat most of those! It is called a healthy diet!!!! This is going to be hard....junk food is okay?? No way to lose weight, though!
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Well that’s concerning Denny. Fortunately weight is not an issue for me. Ironically, after years and years of struggling to first lose weight and then to keep it off, I am now trying to keep weight on. But I do eat a lot of vegetables and feel awful if I don’t have them in my diet. Sigh....
I tried the Aquafor you recommended. I do think it will be helpful but need to find a strategy for using that as well. I find it horribly greasy and sticky on my hands. I’m one of those people that doesn’t like the feel of lotions or anything else and wash my hands a lot. Trouble ahead!
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Sadie-maybe Udderly smooth will work better for you. As soon as I wash my hands, they get way too dry and I have to apply Aquaphor immediately.
I sell stuff online on 7 sites, mostly clothing. So I have to wait until the Aquaphor sinks in before I touch the clothing.
There is always a challenge with our chemos!
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Denny123-That is interesting about the folic acid- I read an article that said that because we have so much added folic acid in our foods and get more folic acid-in our diets we need lower doses of Xeloda than people in Europe- so I am not surprised at your observation. I was taking Folic Acid at the beginning of Xeloda that my MO wanted me to take because I had severe Hemolytic Anemia- she said it promoted cell stabilization - when the HFS hit hard I lowered my dose and asked her if I could stop the Folic acid due to the study I had read, she didn't think it would matter, but, said it was ok. I stopped it along with the dose reduction and my HFS basically resolved.
Several foods on your list I no longer eat since I don't like them, but, do eat a lot of nuts and seeds, some cereal- but B vitamins are added to lots of grains in this country.
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So, after meeting with my Onc and outlined just how hard the SEs have been in cycle 2, including the whole of the ‘week off’ and dropping day 14 of the already reduced 3300mg per day dose of Xeloda, we have a new plan.
Dose 3000mg per day taken for 10 days only in the 21 day cycle, so I’ll have 11 days off. She was surprised by how intolerable I’ve found this so far and thinks the drug must be hanging around in my system instead of flushing out. She also said that most people find Xeloda SEs pretty manageable and was surprised by my story. In fairness her parting shot was ‘ you do need to be able to get off the toilet’.... too true!
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