All about Xeloda
Comments
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Susan
Thank you- you, Hummingbird, and I can travel this next path together!!!!
Babs
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I'm feeling like practically a veteran around here with almost 4 weeks of on/off Xeloda under my belt
Welcome, Babs, Macy, and Hummingbird!
I'm really sorry to see so many of us here after not doing so great on Ibrance, that was my experience, too. Like several of you, Xeloda is my 4th drug regime this year, but hopefully we can all be on this one for a while. Like leftfoot, I'm finding this pretty livable so far. I'm concerned about my tender hands and feet getting worse and I'm a little more tired, but it beats the way I'm remembering IV chemo and for that I'm very grateful.
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hey ladies, I am here too. Good luck to us all. Myra.
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Hi Myra
How are you doing?
Babs
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Hello everyone again! I haven't posted in a bit but have kept up on all the info here. I started xeloda in October and for me at least I think I like it better than the hormone therapy. But that is right now. And I'm excited because it seems to be working. But I stressed out today because I forgot to take it this morning. I called the doctor and the nurse told me to just skip the dose and take it tonight. But of course irrational me decided that I was too scared to not take it and 5 minutes after getting off the phone with the nurse I popped those two pills!!! My husband is not happy with me right now. I don't know what came over me but I bugged out about not taking the medicine. I'm going to wait just a little longer to take it tonight but I guess that wasn't the smartest thing to do.
How strict are all of you with taking the medicine at the same time everyday?
Have a good night all!
Renee
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Renee, don't beat yourself up over taking your Xeloda after forgetting the morning dose. But, skipping the odd dose that slips your mind isn't a deal-breaker. It happens.
Regarding the every-12-hour dosing I'm terrible about that. My doses of Xeloda are usually closer to being 8 hours apart. I'm not an early riser and don't eat breakfast until late morning. I take Xeloda after my late breakfast and then about mid-evening after supper. I don't fret over my dosing schedule. I figure as long as I get both doses swallowed by the end of the day I'm ahead of the game. In a perfect world Xeloda's manufacturer would like the drug taken every twelve hours but our lives don't revolve around medication. At least mine doesn't.
Kessala
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All have to say is that in 3 years of taking Xeloda I have missed many doses and I definitely don't take it every 12 hours. I do my best to be consistent with my schedule. don't fret if you aren't exact.we are only human.
I feel old having been in Xeloda for so long 😉
Good luck to everyone who is new to the drug. May it treat you all well
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I'm hoping for extreme responses for all you newbies!
Like Kessala and leftfoodforward, I have missed doses at times, and I often wind up taking my doses a few hours off the 12-hour ideal because I usually eat breakfast later. It hasn't stopped X from being super effective for me for 27 months now!
I've been pretty vigilant about my hands and feet, and my troubles there have been manageable so far. My best advice for you about that:
- give your hands & feet regular slatherings of a thick, super-rich lotion (I like original formula Nivea)
- never go barefoot (but especially when you have slick lotion on your feet!)
- get some cushy, lightweight shoes like Skechers GoWalks with memory foam insoles
- give up heels and any shoes that concentrate pressure on your soles! (sigh)
- wear good, flannel-lined rubber gloves when you do housework
- let someone else open jars and prune the roses (i.e. avoid tasks that put pressure on the palms)
- don't expose your hands or feet to water for longer than the length of a normal shower
- exfoliate your feet very, very, VERY gently, and only a little at a time (I use only a soft washcloth and a little olive oil soap).
- don't stay on your feet for too long at a time, especially when the drug concentration in your body is higher
- elevate your feet for a few minutes mid-afternoon or whenever they feel sensitive
- get enough healthy fats in your diet to support your skin
- SLEEP to allow your skin to repair itself
- and hydrate hydrate hydrate!
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Lulubee: Great list of tips! Thanks! I'm also a "transfer" from Ibranceland. After three months on Ibrance and Femara, my scan results showed progression. I'm finishing my first 14 day cycle of xeloda and hoping to get good, long-lasting results with minimal side effects. I wish the same for everyone here too! Happy almost New Year!
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Macy, I'm sorry you are having a hard time getting a treatment that works. I hope Madame X will be the one. No hair loss on this drug.
Winning, that is a low dose you are on, is it working?
Hummingbird, my first dose was 7 pills, for which I thought was going to be the death of me, but not until week 2, so hopefully only doing 7 days on will be more gentle.
Rseman, I don't think there is a need to panic if you skip a dose, just so it doesn't happen often! And if you are only on 2 pills at time, shouldn't be a problem since some of us take 3 or 4 at a time.
Kessala, I'm with you on NOT being diligent on taking the pills every 12 hours. I think I'm closer to 10 hours from morning to evening.
Lefty, you have to be most grateful to get so long with Madame X! And like I said before, I hope you get many many more.
You too Lulu!
Faslodex is what failed me, I could have stayed on that forever! Ibrance will be my next treatment if Madame X quits working. I've been on X since February.
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LuLubee-thanks for that list-it really helps! Everyone else thanks for your encouragement. I go this afternoon to meet with my MO's nurse practitioner and will find out then my dosage. Hoping Xeloda will keep me stable for a long time! Or at least more than just 3 mos. Changing meds so often is exhausting!!!!
Babs
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Great list of tips, lulubee! I noticed the biggest problem with my feet was the day after Christmas when I had been on my feet cooking and celebrating (and ignoring my HFS) all day long. Huge blister on big toe and small one on other foot, and three fingers on each hand were cracked and sore. After a day of rest, they were much better.
My CEA tumor markers have stabilized, but not really dropped much- maybe a point or two. I'm hoping for a scan in a few weeks to show some regression in my liver.
Good luck to all the newbies! I find this drug easier than Femara/Ibrance, as my energy is pretty good and I don't have to worry about the neutrophil count every few weeks, and avoiding germs. Blood work seems pretty stable with this drug.
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goldie, my ultrasound is ok. Liver mets are not active. Doctor said they are lethargic. Will have my TM done in 1 week - will see. This DNA test freaked me out! How they can predict relapse 6 months before it happens. I know it is still in tests phase, so will try to forget it for the moment.
Merry Christmas to everyone and good luck on Xeloda for the new ladies.
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Ladies, Thank you all so much! The info and support here is much appreciated.
lulubee - thank you for the thorough list of tips! I will definitely be following your advice - After 27 months, you are an expert! Best wishes for a long, continued success!
goldie, I agree that 8 pills (4,000mg/day) seems high. I am nervous about it. But my onc's nursed stressed over and over that I need to call them at the first sign of any issues. I am always the patient that is on the highest dose! I took 10mg of Affinitor each day - never reduced. Then 2 clinical trials at the highest dose, and then Ibrance for 6 months at the highest 125mg dose. When the nurse told me they want to start me there with Xeloda, I said, "Oh no, not again!" She laughed. So I took my first 4 pills this morning, and I'll see.
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Hi all, thank you for all your support. I do feel a bit better already! I will be starting Xeloda next week along with the Tykerb for my Her2+. I'm glad that there are a few other newbies, babs, hummingbird, myra, starting along with me (although, of course, I'm sad that any of us have to start on ANY chemo). Maybe we can learn along the way.
I don't know what my schedule will be. My onc told me but I can't remember...I was still in a daze from finding out my TMs had jumped and was being taken off my current protocol. I think he said something about days 1 and 8? I will be starting at the highest dose, I do know that.
I'm going to try not to worry about potential SEs too much. Like many of you, this isn't our first rodeo (but rather my 5th) and I generally know how my body will react. I'm hoping for no hand/feet issues. I had taken up getting pedicures since I couldn't get my hair done. I suppose I will have to give those up too now.
We've got this, ladies.
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Hummingbird,
It's true that 4,000 mg/day seems unusual, but recommended dosage depends on both height and weight of the patient. In a post on November 12, I reported links to calculate your dosage. Also there are pills of 500 mg and pills of 350 mg, so double check what your prescription says: 8 * 350 = 2.800 mg/day would be almost exactly what the calculations suggested for my wife, at 5'7" and 130 lb.
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gciriani, thank you for the link to all the information. I will read it now. My pills are 500 mg each, with 8 pills a day - 4,000 mg. I am 135 lb. and only 5'1" so might be a lot for me. But I am on the 7 day on, 7 day off schedule. Thanks again. I will check it out.
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Hummingbird
I'm also taking 8 pills a day 500 each 4000 per day. Just picked them up but I think I'll start them New Year's Day instead of tomorrow AM. I would like to have a good New Years(if that's possible). I'm also on 7 days on 7 days off. I am 5'10" and 139 lbsh
Hope we both do well on this
Babs
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I wish I understood more about how oncs decide the dose and whether to do 7/7 or 14/7. It all seems so random to me! I'm almost exactly the same height and weight as you, Hummingbird, but I'm taking 3000mg total a day at 7on/7off.
I usually like to guage things based on what other people here are doing, get a feel for how these things go, but all the differences with Xeloda seem like they're coming out of nowhere. I'm sure that's not true, but I'd love to know what our oncs are factoring this by.
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Hummingbird,
Plugging in your height and weight, your body surface is approximately 1.64 m^2, and the dosage for a 2 week on-1 week off would be around 2050 mg/day. Correcting for a 1 week on-1 week off schedule that would change to 2,700 mg/day. What your oncologist prescribed seems so different from the dosage recommended in the Genentech clinical trials, that I would ask for a second opinion, if I were you.
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Hummingbird,
I'm another newbie to xeloda. Just started dec 21st.
I'm 5' 4" 115 lbs (1.54 sq meters) and am on 3000 mg a day 14/7. Also seems high according to formulas.
My MO said dose could be reduced is SE get bad, but so far nothing worse than bloating and upset stomach.
Gciriani,
Thanks for interesting post. I never though to question the dosage.0 -
Goldie, yes I'm on 2000mg twice daily - highest dose in hopes of getting my pancytopenia a little under control. I've needed monthly transfusions for past 3 months due to bone mets progression destroying bone marrow in just about my entire pelvis.
Starting my 3rd cycle Sat. So far s/e are fatigue that is the worst. Annoying diarrhea, nausea with some bad reflux at night, achiness but meds are really helping. Had some minor intermittent burning of pads of fingers and toes but is more annoying than anything. So far, right now I don't like Madame X, but hope to love her when she stops the progression of my MBC.
Side note: this maybe TMI for some but it really was funny. Over holiday went to see my sisters new home that is under construction in VA. Bang! Diarrhea hits. (Even though I took my lomotil) I have to run outside (luckily wearing high rain boots) to the construction site Porta Potty. I was mortified. Surprise, it was spotless, even he lots of TP. I had orange diarrhea (usual due to the orange pills). Drenched myself with hand sanitizer. My DH says, "can you imagine the first worker who goes in there Monday morning and sees orange?"
Happy New Year Blessings to all.
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Mspark
I'm glad I decided to start Xeloda NY day and not Eve after reading your post. What a way to spend NYEve- in every bathroom I pass that night!!! Thanks for the laugh!!!
Happy New Year to all and may Xeloda be what brings us all NED for a long time!!!!
Bab
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Day 4 and the feet have flared badly. As I may have mentioned, my feet were getting some HFS from Ibrance, and it is back with a vengeance. Bottom of my feet are starting to flake, so out came the moisturizing socks. I have rubbed my feet with bag balm and worn the socks all day. It does seem to be helping a bit.
*susan*
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Just got a call from my NP that my ALT (and AST) are elevated, about twice the normal range for ALT. This is new for me, and has come up since starting Xeloda. Has anyone else had elevated liver enzymes on this protocol? They are moving my CT up two weeks just to see what my mets are doing. I'm crossing my fingers that the increase is cause by the Xeloda, and not my cancer. We shall see.
Poking around the web, it does look like some patients do experience elevated ALT on this med, but it's not that common. Does your onc test this with your normal blood work, like mine? What have some of you experienced regarding liver enzymes?
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Sandi,
My doctor watches the ALT and all the other liver numbers very carefully. In fact, she stated that while on Xeloda these numbers would be the ones she watched first. Something about how Xeloda works itself through the system, the liver does most of the work.
*susan*
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I guess that is why my doctor told me absolutely no alcohol while on X. I'm "enjoying" exploring nonalcoholic beer.
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gciriani, thank you for plugging in my numbers and working out the dosage.
I agree with others here that it seems confusing how different oncs are prescribing different dosages.
So here I am on my very first day and was only able to take the 4 pills this morning. The entire afternoon and up until just a little while ago, I was so nauseous that all I could do all those 7 hours was just try not to throw up. So I just ate a little now and decided not to take the 4 pills tonight until I contact my onc tomorrow morning and run this by her. Otherwise, I will be awake from nausea all night. That's how sick I felt. I will need an anti nausea med before I can continue. I will also discuss the dosage. So - not a good beginning
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the liver is what changes Xeloda to 5FU the active cancer attacking drug. You can get 5FU in infusion form, but it hasn't worked as well as Xeloda and they don't know why. Plus, there is an advantage to taking an oral chemotherapy drug. But 5FU can cause issues with the liver which is why they watch those values so closely.
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Susan wow that's fast to have foot issues! But I guess since you had them with Ibrance you're more susceptible to them
Hummingbird I'm so sorry you had such nausea. That's why I decided to start 1/1 instead of 12/31. I want to feel normal for New Years! Not that any of us can really be normal anymore!
Left foot I had read about Xeloda and the liver. I'm a bit nervous due to my liver mets That's a question for my mo when she returns from vacation.
Babs
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