All about Xeloda
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Boy, am I behind! This site is such a mess, and I really wish that they had not changed it.
Yay to Pirate girl!!
Dodgers--I have been on Herceptin and Xeloda for 4 1/2 years.
I take B6 at 100 mg, but really don't think that it makes a difference.
Important! Avoid foods high in folic acid and folate! I am on several Facebook BC groups and about 75% of us have worse hands and feet because of folic acid in foods. Some ladies have worse diarrhea or worse vomiting.
I started at 2,000 a day at 7/7. After 3 years of infected toenails, I ate too many spinach salads and my feet got so horrible that my onc took me off Xeloda for 7 weeks. During that time, I developed a spot in my liver. So I begged for an increase to 2,500. I feel so dumb that I didn't take the folic acid warning seriously. I sure do now!
BTW, I am at 20.5 years of Stage 4 MBC de novo. I am blessed.
Denise
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Denny, I can see why you wanted to stay on it. 20 years is impressive.
Does Xeloda cause acne on the face? It's not normally a problem, but the past week I seem to be breaking out. It could also be from stress off the charts.
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denny123–
Thank you for the info.
Lots of foods have B9 in them. Do you see the same issue with worsening HFS after eating Brussels Sprouts as having a large spinach salad?
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wren-I don't have acne but a lot of women are complaining about it.
Dodgers-google to find the 15 foods highest in folic and either avoid those or eat in moderation. Brussels sprouts are high in folic. Before I got smart, my diet was very high in healthy foods andthus my folc consumption was off the charts.
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For low folic options....We can eat beef, chicken, fish, pasta, potatoes, green & yellow beans, peppers, tomatoes, peeled cucumbers, onions, carrots, squash, iceberg & red lettuce, apples, pears, peaches, watermelon, plums, dairy, yogurt, pudding, ice cream, JUNK FOOD!
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Denny123- thanks for that list.
Craving roasted cauliflower so maybe will have that today as tomorrow is “start the chemo” day.
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It’s official. This morning I took a deep breath and took my first dose. Started Day 1 of 14
Thought I felt slightly nauseous but it may have been more nerves than med?
Again, thanks to each of you who has shared your experiences which help people like me who are just starting.
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dodgers-be sure to take the pills a half hour after a snack or meal. Helps to prevent the nausea.
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Denny123– Thanks.
I did take pills after breakfast but it was more immediate after the meal. With dinner, I did wait longer (due to looking at the meds and not wanting to take them) but no longer than 20-25 mins after eating and did not feel nauseous.
Trying a different breakfast meal tomorrow and will wait more after eating.
Again, thanks
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Denny123– I think I found what works for me reference Xeloda and nausea. I wait 25 mins after eating and then take the pills. Seems to eliminate feeling sick after taking them.
It’s been a week so far. I do have big D but, so far, taking prescription lomotil helps a lot. I also see that like when I was on IV chemo when originally diagnosed, I get nauseous if I don’t eat a few small meals during the day.
Tomorrow is bloodwork for Wednesday MO appointment so will see how Xeloda is treating me inside.
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dodgers...great! The pills are supposed to work better with partially digested food. Some ladies eat a few crackers, but I always eat more than that. I have never had nausea after taking the pills.
I eat every 4 hours.
And I have constipation.....go figure. But actually I prefer that since I can just take Miralax and stool softeners every evening to stay regular.
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I am back ladies. And hello to the new ones. I decided to go off work and go on vacation. I couldn’t take the fatigue anymore. I seem to have every symptom in book. I’m so tired. My hands and feet look like I’m descaling animal. I bought a pair of cloud sandals and lemon jellies for my feet. I need ice packs on bad days. My green drinks with kale and fruit made me super constipated so they offset the diarrhea. My eyes and nose are super dry. I’m super sensitive to the sun. My h and feet feel like their burning under it. I’m so tanned I look like I’m back from the Caribbean but I’m barely in the sun. My eyesight is wierd. You name it I have it. This has been worse than IV chemo and ibrance. Those were a walk in the park.
it looks like a need another drainage for my lung. The X seems tobe working on my nodes but it’s not shrinking the liquid. Very disappointed. I don’t understand why it not. I’m clear everywhere but this darn liquid. I really don’t want a permanent drain. Scares the shot out of me.
Well I’m trying to enjoy my vacation as I huffs d puffs along walking with my teen son. I hope I can do things with him. I hate having my kids see me this way.
Anyways just wanted to hi!! Enjoy the sun
D
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dancingdiva, nice to hear from you and sorry that Madame X is giving you a run for your money. Perhaps you’ll feel some relief when you get your lung drained. I hope you can relax on vacation even with the physical limitations you are dealing with. Best wishes to you.
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Dancingdiva, so sorry for the side effects you’re dealing with. Is there any way they can reduce your dosage? Also, I’m not sure what schedule you’re on, but I take mine 7 on, 7 off. I’m very fatigued, but the other side effects aren’t so bad. I hope you can have a great vacation.
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Is anyone on a metronomic schedule of Xeloda? Now that I've shown great improvement on Xeloda, my MO lowered me from 3000 mg to 2500 on a 14/7 schedule. Since my side effects are pretty tolerable, I hate to rock the boat. Yes, I'd love even better QOL but I've had so few good scans in this journey that I'm apprehensive. My MO is ok with me going as low as 2000 mg. I'm thinking of asking her about a metronomic schedule (low dose, no breaks) but would like to hear experiences of others.
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I'm experiencing photo sensitivity and had something that resembled a sunburn on my nose. It's finally peeling and the skin underneath looks normal. I'm trying to be really good about wearing sunscreen. It really seems to be affecting my eyesight. I'm using eye drops by the ton and they still feel dry.
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Tonight is end of cycle. Will I see “better” days in the next 7 days?
So far SEs are mainly fatigue, nausea, diarrhea, and occasional bone pains.
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Dodgersgirl -My MO warned me that my off week could be the worst. Im on a 14/7 schedule and I would say that day 12 through 16 could be my worst days for fatigue but that isn’t true of every cycle. Some cycles I do not see any worsening of fatigue. I do not have any gastro side effects at all. I’ve finished 8 cycles so far.
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rk2020– thank you for the reply.
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I am back with a new-to-Me SE.
Starting Cycle 2. I am 14/7 which MO will NOT consider changing. Sigh. Having really awful bone pains. Started like bone pain I had on AC chemo (which I handled with daily Claritin and Ibuprofen). Woke up at 3 am today with really awful pain starting with fingers (bones and joints) from one hand and running up that arm to elbow, bone to shoulder, then running across my back/shoulders, down the bone on other arm, to elbow, down that side bone to wrist, to finger tips.
Made that area really tender. Can’t stand to place arms on pillows or arm rests.
Took 2 Tylenol this morning which dulled the worst of the pain
These evening took 2 ibuprofen which did a better job at numbing the “bad” pain.
Found an FDA post that shows bone pain as a known SE for 10% of people.
Anyone here have similar SE?
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Hi Dodgersgirl, I will say yes although I didn’t realize it was the Xeloda. I don’t recall having this when I was on it before but have definitely been experiencing a lot of joint/bone pain. I particularly notice it in my feet as I hobble around. Always something!
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DodgersGirl, I'm sorry your MO won't consider a 7/7 schedule. I've done that for ten months and am able to tolerate it pretty well. I have lots of pain, but I don't think it’s from the Xeloda. I've had it for a long time. I have arthritis and degeneration, so I wouldn’t know what it's all from. I hope it gets better for you.
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sadiesservant- thanks for the reply. My bone pain started a flashes of pain in left thigh like something going on in bone marrow (which I have had with other IV chemo) but this morning, it was constant pain.
Kbl- I, too, have lots of arthritis pains but this feels way different. Literally made my skin tender. Weird.
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No bone pain here yet. Mostly I'm really nauseated. I don't want to take a zofran because I'm already constipated. Tomorrow is day 14 of my current cycle. I'm really looking forward to a break. My brain feels a little "off" which makes me reluctant to drive very far.
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Wren44- for me, if I don’t eat every few hours, I feel very nauseous.
This week I am experimenting with different foods that I can have on the ready. Banana baby food, bananas, summer pasta salad, tuna salad and crackers, saltines, smoothies, etc
That feeling of nausea can sure overtake the moment. I haven’t taken Zofran yet but do have it available. And a bottle of Colace to try to avoid constipation. For me, prescription Diphenoxylate-Atrop is necessary when I leave the house to control diarrhea
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DodgersGirl, I hope you can find out what’s causing the pain.
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kbl— Thanks
Pain in bones is all gone today except in elbows.
I figured out a comparable. It’s like the pain I have is certain meds are used on me for “twilight” medication for surgeries. There is one combination I tolerate fine but the other combination leads to lactic acid and the pain that goes with it.
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Oh, I love the twilight juice. Lol. Why do they have to wake you up so fast? I’ve never had the pain with it. Glad it’s a little better.
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Friday was the first day of my week off. I was so nauseated and dizzy that I really couldn't do anything. It's Sunday and I'm starting to feel alive again. Have other people experienced having side effects during their week off?
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Wren, the drug is still in your system. When I was on it, 5+ years, I always felt best on my first week back on. However, everyone is different.
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