All about Xeloda

PattyPeppermint

thanks left.

Babs. A good dre indeed. Congrats on Ned !!! I've not shown Ned on any tx but was stable for quite awhile on femara and then ibrance/ falsodex combo

susan_02143

Welcome Patty..... my only suggestion, if you aren't a breakfast person, start planning what you are going to eat first thing that is enough to hold off stomach issues, but not so much that it causes some. For me, some kind of protein has been essential. I have found Xeloda MUCH MUCH MUCH easier than Ibrance, but I was the side-effect poster child for that drug. Best, *susan*

PattyPeppermint

Susan. Thanks. Good to know. I def don't like breakfast so I'll be thinking. Comforting to hear it's been do much easier then ibrance for you

lulubee

During my X weeks, I have zero appetite in the morning for anything but coffee, and eating something just so I can take the morning dose is always a bother.

I am a very clean eater ordinarily-- very little white flour or sugar, no processed junk, etc etc blah blah blah. But waking up to Madame X has a way of making me pine for a chocolate glazed Krispy Kreme donut like nobody's business. Go figure.

SO in my pitiful efforts to behave, I boil a dozen eggs at a time and put them in the fridge in a ziplock, still in their shells. They will keep for at least two weeks in the shell. That way, I at least have a way to get some protein down without effort. I have discovered that the pastured, organic eggs are totally worth the extra coins. No comparison. I do not adore boiled eggs but they are perfect protein and they keep me going. Salt helps. And orange juice.

I also keep plain greek yogurt, granola, and berries on hand for mornings when I do not fancy yet another boiled egg.

Aside from breakfast... I also try to keep a container of lemony tuna salad in the fridge during Xeloda weeks. Sometimes just a bite or two in the afternoon gives me a boost when the fatigue is making me crazy.

PattyPeppermint

more great advise. That's why I love bco. I am not too knowledgable about nutrition so why the protein ?

JFL

As for the breakfast thing (and taking Xeloda with meals in general), I asked if this was an issue of stomach upset or drug effectiveness. (I have what I call a "stomach of steel" and have been known to take drugs that are supposed to be taken with food due to stomach upset on an empty stomach against recommendations.) I was told Xeloda needs to be taken with food to optimize effectiveness. It may be fat soluble and need fat to dissolve, or a certain vitamin. Maybe someone here knows exactly what aspect of food it needs. That said, I always take it with a well-rounded meal (combo of carbs, protein and fat) to cover the bases.

lulubee

All I know is that the only time I have ever vomited Xeloda was when I tried to take it with just a banana because I was in a hurry to get out the door.

You do not ever want to vomit Xeloda. Trust me.

cjanet

Welcome Patty! I haven't seen you in so long! Join me here in Xeloda land. I am on my week off, will start again Friday night if I get the meds tomorrow in the mail. I have had numerous side effects but now I'm on a lowered dosage of 1000 mg in am and 1000 mg in pm.

theziz

Hi Xladies;

This is my second circle of xeloda and my TM went from 300 to 1145.

Wow that is a lot and I am upset and worried that this drug is not working for me

susan_02143

Took my markers three cycles to see the results in my tumor markers. Mine didn't go up anywhere near as much, but they didn't head downwards immediately. My oncologist stressed that I needed to be patient. What does your's suggest?

*susan*

leftfootforward

back in Madame X after 4 weeks off. Body is adjusting again. Love that this drug is working for me but I sure didn't miss the SE.

babs6287

I start my next cycle of X tomorrow night after a 2 week break. I would have thought my hands and feet would have been much much better-they're ok for an extra week off. Had my TMs taken again today and they're down some more from last month.

CA 15-3 from 34 to 23, Cea from 8.6 to 5.6

Happy with the results just wish my SE's were much better.

Babs

leftfootforward

Babs- those are great numbers. Mine haven't ever been that low. Enjoy NE

babs6287

LFF In January my CA15-3 was 248-which was my all time high.

Babs

JFL

Ziz, my markers flared the first few cycles and still are a bit testy. However, my recent PET showed significant improvement since I started Xeloda almost 4 months ago. I hate the side effects but am loving this drug right now because it is working so well. It seems a lot of women have the markers go up on Xeloda before they go down. Give it some time to normalize and wait to see what your first scan says. When is your first scan?

Stilts

Had a checkup yesterday with ONC...just got called with lab results...my TMs dropped 200 points after one cycle of Xeloda...ONC is pleased and so am I😀...needing some good news!. Got referral to see Orthopedics because I am limping due to hip involvement...ONC doesn't want to do radiation yet...would prefer steroid injections by Ortho if needed...kind of want to wait to see if there's improvement with more Xeloda. Anyone else had hip symptoms?

babs6287

Stilts. That's a great drop in TMs. Happy for you!!!!

Babs

Peanut0110

Stilts, great news of your dropping TM's after only 1cycle. I am waiting for mg TM results after 3rd cycle

susan_02143

Stilts,

Wow! That is amazing!

*susan*

lulubee

A have a question for others who have been on Xeloda a while.

Every cycle, after a few days of dosing, I start having a harder time focusing. It gets a little worse each day of the on-week. I am a writer and also a heavy reader ordinarily, but by Friday-- forget it. I can't focus enough to read, and paragraphs just will not come together for me. I've started planning my work accordingly. By day 6, even movies can seem like a lot of effort (and at that point, I will definitely fall asleep an hour in, so why bother?).

Anybody else notice this?

PattyPeppermint

reading your texts. Amazing results both in tm's and scans for several of y'all. Yea. ! Good positive news !!

I got my xeloda rx in Friday around lunch and took it at noon then again that night. Trying to visualize the cancer shrinking and then dying when I take the X. Instead of thinking about thd possible horrible side effects. Looking forward

babs6287

Patty you're supposed to take the pills 2x daily so AM and pm it's best if you take it at the same time 8am/8pm. Think it's a bit easier on the body that way

BAbs

Becs511

I just completed my second week on the pills, and right now I just feel extremely fatigued. I couldn't get out of bed to go to work on Thursday, was able to go out and about on Friday and Saturday, but literally slept all day yesterday. I also had to drag myself out of bed to come into work today. With every chemo I have been on I have been told to expect fatigue, but I have never experienced anything like this.

I see my MO tonight and this is definetly something I need to discuss with her, but just wanted to see if anybody else has felt this way on Xeloda, and if so does it lessen over time? Any recommendations?

Edited to add that I am on also 2 high dose anti-seizure meds due to a seizure disorder caused by brain mets whose side effects are fatigue, confusion, and dizziness.

JFL

Becs, I had extreme sleepiness kick in when I started Xeloda. It was bad. My MO and I recently came to the conclusion it was from Cymbalta, which I have been taking for over a year for joint pain. I had no side effects with Cymbalta on hormone therapy/Ibrance, but once my hormones were unblocked, it was too much for me - maybe too much serotonin - which makes me extremely drowsy. I am currently weaning off Cymbalta and on to Wellbutrin. Wellbutrin helps a lot with fatigue/sleepiness/low energy. I am on a half dose now for about a week and saw improvement with sleepiness immediately. There is still a ways to go but I am starting to feel like myself again.

I suspect your issue may be linked to the anti-seizure meds in combo with Xeloda but not the Xeloda itself. From what I gathered, a lot of Xeloda takers have *some* fatigue but if it is extreme, it might be something else. Would say that Wellbutrin, Provigil or Nuvigil may help with fatigue, especially if changing anti-seizure meds is not an option. Wellbutrin may be contraindicated for seizures but I don't believe the other two are.

cmlbrower

I am to begin Xeloda Wednesday and am extremely nervous about doing so. Diagnosed in 2014 with stage 4 (after 16 yrs cancer free) and since have mets to spine, hip, ribs and liver. Ever increasing. Seem to have failed every other drug - femara, taxol, Halaven, femara/Ibrance most recently. Did radiation for ten days to chest and upper back which nearly killed me. Been off all meds for over a month and feel the best in a very long time. Really struggling with the idea of Xeloda - especially reading about side effects. I don't seem to tolerate meds much at all but I also don't tolerate cancer! Any words of wisdom, advice or comfort

cmlbrower

hi there! My pills are to arrive tomorrow (Tuesday) by noon. Would you suggest waiting till Wed morning to start? I wouldn't mind putting this off

cmlbrower

How is it going? Tolerating xoleda so far

cmlbrower

You say you hate the side effects - I am to begin Wednesday and nervous as heck. What do you do for the side effects? I have heard that hand/foot and nausea are the worst. Nausea has gotten me with each and every drug except femara.

babs6287

Becs. I am tired but it was really worse on Ibrance/ femara. It sounds like it's the combo that's getting you tired. Ask your MO

Cm/ browser. I would start Tuesday night. The HFS doesn't start for awhile. It is cumulative. Xeloda brought me to NED so I really can't complain too much. I still work full time and am very active. My QOL is good so I can deal .

Babs

Peanut0110

Side effects are worth it as long as it is kicking cancer in the ass. I just got my tumor markers back and it went from 218 to 143. I am just starting my 4th cycle and just started with my feet peeling.