All about Xeloda
Comments
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Suecolo2, that IS a large dose. My oncologist started me taking 4,000 mg of Xeloda per day back in August. I'm 5' 5" tall and weigh 115 pounds. I told Onc that sounds like too big a dose for someone my size but she told me she used the manufacturer's dosage calculator and that's the dose I'm supposed to take.
Within 10 days of starting 4,000 mg of Xeloda per day the bottoms of my feet felt like they were on fire! They went from a tingling sensation to downright PAIN overnight. I immediately phoned Onc, told her I was stopping the Xeloda right now and she agreed.
I had bad pain in the soles of my feet for a full 7 days after stopping the Xeloda. I mean I couldn't have gone to the store to buy groceries kind of pain. Nothing would help with the pain either. Not over-the-counter pain relievers, not narcotic pain meds, nothing. I just had to suffer.
I developed huge blisters on my soles after the pain finally left. I had been badly overdosed.
Due to hand/foot syndrome my dose has been lowered to 2,000 mg per day for the first week and 2,500 mg per day for the second week. This is MUCH more manageable!
Pay very close attention to your hands and feet and when you start to feel like something's "off" call your Onc and tell them.
I'm continuing to take Xeloda at the much reduced dose and my latest PET scan showed I'm having a wonderful response to the medication. My liver mets have all but disappeared!
I wish you the same good response I'm having with Xeloda.
Kessala
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suecolo, I take 3 tabs mornings, 4 at night, so 3,500mg a day. I'm a about 5'6, weigh 52kg (115 lbs) That's 98 tabs in 14 days! But, as Mompsych & Leftfootforward said, you can adjust dosage & schedule, see how it goes. Good luck!
Rockinlife, insurance companies!! Did they initially cover the X & then cut you off? Definitely ask your onc to appeal with a motivational letter - it's not right that they can dictate your treatment, I agree!
Feeling less fatigued today, did a yoga class & going to nap now, yoga was a push, but lovely.
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We were told that my mom's dose was based on her height and weight, but he then added that he was going to make it a little lower to start. Not sure if it was because she was so obviously worried about the SEs or if he decided to do it because she is currently anemic. Today is day 2 for her and so far, thankfully, it has been uneventful with no SEs yet.
For those who have had success with Xeloda on their bone mets, do you actually feel less pain? The onc feels her pain will get better once the cancer is under control. Hoping that's the case. When she was first DX'd she only had pain in one spot and the radiation took care of that. Now her pain is all over in different spots and on many days it's unbearable even with pain medication.
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Everyone beware. I have been taking Xeloda for four months and my insurance company suddenly cut off the approval with NO NOTICE. So, while my doctor is appealing, they won't even provide me with an override for three days of the drug. Xeloda is $900 for 3 days of medication, out of pocket. Of course, I will have to buy it, which is absolutely ridiculous. New year, new insurance guidelines. Get your ducks in a row so that if this happens to you, you can find the resources to get the drug while the insurance does their red tape thing. In my opinion, this is absolutely criminal. Stage IV cancer patients have enough to deal with and then they have to spend half the day on the phone about insurance benefits? No words can describe my fury.
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Lynn1, all of the Xeloda side effects get better with every cycle you are on. My worst symptoms peaked right after cycle 4, and then they had to cut me back to 1 week on 1 week off. Everyone is different, so you have to just play it out and see how your body reacts. The HFS is ever-present but does get a little better over time. Just slather, slather, slather, and occasionally soaking my feet in cool bath water with some aloe vera body wash was soothing, as was icing the soles of the feet. Be kind to yourself for the next few cycles. I always say, give any new therapy about a month and a half for the body to adjust!
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canadagirl, I am in my 5th cycle of Xeloda now. I have extensive mets in pelvis and spine. When I started Xeloda in early November, I had to make a use of a walker to walk. I was also on 3mg long lasting hydromorphone for pain. After 4 cycles of Xeloda, I can walk with a cane and can get around without a cane inside the house. The pain has gone down as well, just 1 mg of hydromorphone as needed, I usually need 2 - 3 a day. It definitely helped with my pain and mobility. My scan is in two weeks and I am praying that there is no new development. All the best.
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Thanks Hansaim! Really hoping that getting the cancer under control will help her pain. She is on day 7 of Xeloda and so far--touch wood!!--no side effects except a little stomach discomfort, though it seems to be remedied by taking it within a few minutes of her meal instead of waiting a little longer.
I'm the moisturizer police and call her every few hours to remind her to slather the cream on her hands and feet
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Time for me to move on. Had progression along with nasty HFS, so MO had me off for an extra week, I saw her today and she confirmed progression - "xeloda not working". So I start new chemo next week, gemzar. Anyone here been on it? Is there a thread for it? I could not find one today, but may have missed it.
By the way, it WAS the Xeloda causing most of the fatigue! I have felt better the past few days than I have in months!!!! Dreading new chemo .... same as everyone else, change is difficult.
Best wishes to all of you here - may you have few SEs and may it work well for you. (My MO says if it works at all, it usually works well! It's just that it won't work for some cancers).
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Damn, Linda, sorry to hear that the X stopped working. I know there are gals on Gemzar out there, just can't think of names tho. Starting a new chemo is always scary, even if you know what to expect, you kind of wait for it to happen - se wise, I mean. Good luck on the Gemzar, hope it'll do the job! Interesting to hear about the fatigue, and nice to hear it goes. It gets quite depressing if I give in to it too much. Lately I just want to climb into my bed and never get out again, tho I'm not feeling sick, just tired, & tired of being all upbeat - I swear the next person who tells me I'm looking so well, (on a day when I feel like crap), may get punched!
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Linda,
I was on gemzar, but it was with carboplatin. Felt pretty good on the combo. Was only on for about 5 months though - they stopped working. Hair thinned a bit. It really hit my hemoglobin though. Needed to have a transfusion. Good luck with gemzar!
Laura
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Carolben and Laura, thanks! I already had hair thinning from the afinitor/letrozole combo.... MO has assured me I will not lose all my hair .... no promises on the nail issues ... those are the worst ....
Carol, I am with you on punching out the next person who tells me I look good!!!! AAARRRGGGHHHH!
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Hi Linda, I was also on Carbo / Gemzar and I do not rememember it making me feel bad. It can do a tton your blood so you gotta watch that.
I hope Gemzar does a wonderful job!!
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Thanks for all the well wishes, ladies. I have my first gemzar infusion tomorrow, and of course, am doing the usual anxiety rituals. But I have to tell you that I have been off the Xeloda since Jan 29, and I started feeling better overall by Feb 4, and have felt really pretty good since then - the worst of the fatigue is so much better. So there IS improvement after Xeloda as far as fatigue and SEs go. Wishing you all well, hoping it works a long time for you and that SEs are manageable.
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Crap. Liver mets progression. Off the Xeloda, on to something else.
rawr.
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Linda and starlover- so sorry about the progression..hope the new meds kick some ass!
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sorry to hear that Starlover... I hope next treatment is successful.
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Hey, friends. What comes after Xeloda? I have a feeling Xeloda is no longer working for me. I have been having some pain in my liver again and can feel some little sore lumps again. I am so sad. I hate this.
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I took Xeloda for 9 weeks and then another four months for colon cancer.
I'm sorry you have the hand and foot disorder. I was blessed, I guess,
because the only thing I had was nausea and diarrhea from it (3500 mg.
per day). Be very careful to keep your hands and feet warm. That is
supposed to help. I wore gloves and heavy socks most of the time.0 -
damn it starlover, sorry about progression, good luck with new meds!
DancingVeggie, am holding thumbs for you - are you due for scans etc?
It takes me 1.5 hours to get going in the morning - wake up feeling like crap, nauseous often first thing. This morning was horribly sob, but managed to get to yoga, was hard to do, but I knew it'd get me breathing better. Took a while & I rested a lot, but breathing easy by the end of the class. Now I just want to sit in my lazy boy & veg out for the rest of the day. Fatigue has been horrible this time, is it accumulative?
It just seems to me today that this is always going to be like this, want to just cry, but refuse to get on my pity pot. Last day of 14 today, so hoping to start feeling better on the week off. HFS not great, fingers dry, cracking & tender. Feet starting too. Using tons of cream, gloves, socks. Mouth sores starting to heal with antibiotics.
I know I can stop chemo at any time - but would be too scared to do so. Damned if you do & damned if you don't!
Sorry to be so negative & down, but it's just one of those days...
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Carolben - sorry you are having a problem with the fatigue. Sorry but it is accumulative. When you stop the Xeloda it will get better as will the hands and feet. I found that mixing burn cream with the lotion and wearing cotton gloves/socks help more with the hand and foot problems than just the cream alone. I use the First Degree Burn Cream. You can find it at Walmart. I was given too much Xeloda to begin with and had a reaction to it, plus they had me on Xeralto wich I was allergic to so that put me in the hospital for a week. Now I am off Xeralto and the Xeloda has been decreased to 3,000 this time around, but I think they may increase it again on Monday to 3,500. I'll just have to wait an see what happens. Praying for you and that everything works out okay for you.
Joy and blessings. AJ
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Getting scans tomorrow. I feel like someone has their Louboutin heel dug into my back between my ribs, and I feel sore in the front under my ribcage to the right of midline. Pretty relentless irritating pressure and soreness. I just wonder what's next. As much as the Xeloda kicked my butt and ravaged my hands, I have been starting to get the hang of taking Ritalin and once the weather gets warmer, I feel like the hands won't be so bad. Now, I'm likely on to something else.
I am being a big baby, but I am just dreading losing my hair again and having a big puffy steroid face. I am scared as hell and so f&cking mad at cancer. I am so mad. I am so, so, so mad at it.
For those still Livin' La Vida Xeloda, try wearing plastic gloves at home when you need to do anything with your hands. Even folding laundry can be murder without gloves. I layered the plastic gloves over the white sleep gloves and that provided a pleasant pressure to the sore fingertips.
Also, I'd wrap some paper tape around my wrists to keep the cotton gloves on my hands all night. Otherwise, they'd end up buried in the sheets somewhere.
Lastly, if the pain is really bad on your fingertips (mine was), put some EMLA cream on the sores. Since you're not needing it to numb your port site, might as well use what you have, right? In desperation would also coat the open cracks with neosporin and spray Solarcaine on my hands before putting gloves on. Just a little temporary relief.
Krazy Glue (the Kragle!) was okay in a pinch if I wasn't able to keep bandaids on (like when I went skiing in Breck a few weeks ago) but the bad part was that I would pick the glue off and rip the wounds open again.
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DancingVeggie -- sending you good vibes for your scan today.
I get scanned on Thursday this week. I've had a stiff neck for about 4 weeks now and my TMs have become a bit wonky (instead of the general decline I've been seeing the past few months), so I'm holding my breath but guessing that my time with Xeloda might be coming to an end too. I would give almost anything to stay on Xeloda. I like having my hair. Wrecked hands and feet and 24/7 exhaustion? Sure, I'll take that.... The devil you know, and all that, right?
Ah well. It is what it is.
Gentle hugs to you all.
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I have not been here for a while, but just wanted to give my update. I've been on X since November, 2013. I have been feeling better overall; better mobility, less pain, TM down! My bone scan last week showed a new area of pelvis which lit up, but the CT scan did not show any new spots and some signs up bone healing. Dr thought that it could be a hair line fracture in the pelvis which lit up the bone scan, so I am to call her if the pain worsens. Will be finishing cycle 6 (14 on and 7 off) in a couple of days. Fatigue gets me down and fingers are sore, but I am finding X is not bad. Wish you all the best with X for a long time.
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thanks for the encouraging words, Elisimo, and the tip re burn cream. Thanks too, DancingVeggie for your tips - am sleeping with gloves and socks, haven't been using gloves to wash dishes tho, need to start doing that.
Kebab, hoping your scan will be good news, good luck, thinking of you. You too, DancingVeggie, also get so mad at this horrible disease. I get so scared at times too, it's normal, dont beat yourself up! You're not being a big baby, shit, look what you're going through! And I get the feelings about steroids & losing your hair yet again, horrible! Sending big hugs
On day 5 of my week off & started feeling human again yesterday - took a beating with this last cycle. It's sooo nice & reassuring to feel better. My frame of mind is also brighter, after feeling pretty low. But I do agree - the se of X are not so great, but no hair loss is a big plus, & it's easier than the other chemos I've had. Please God it keeps being effective!
To add insult to injury, I tripped over a root my dogs had dug up yesterday, and had to have the nail on my big toe cut off! Not clever. Funny, but if it's not cancer related its no big deal.
Hansaim, hoping it is a hairline fracture on your pelvis & nothing more sinister!
Love to all
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I maybe switched xeloda but won't know for sure until next week. My question to a lot of u what happens after xeloda. I am scared to even think about that. Alot of ladies are talking about losing hair and other stuff. Maybe I am a bit paranoid and thinking way to far in advance but can't help but to worry. I have used tomixfin, Femara, faslidex and I am currently on a/a treatment seems like I am going through them so fast. My doctor said not to worry a lot more out there but how do u know worry. Anyone with and suggestions.
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Stella, I was on the A/A early last year for only three months for bone mets as it got to my lungs. I also went through all the hormone meds over time. I suffered so much from this chemo and lost 17 lb. I was off all meds for about a year but my doctor felt I should start a chemo again just to be safe. I started Xeloda 2.5 weeks ago, and believe me I was terrified of starting a new chemo. This chemo has been so easy. I have so little nausea (which goes away when I have my morning coffee and eat). Little diarrhea. Just swam today and cant believe I am on a chemo. I was told that I will experience fatigue as I continue but I can live with that. Nausea is what I can't deal with. Even my hands and feet are not red yet. I do realize that can all change as I have only had one cycle of two weeks on but hope for the best. I have not read that you lose hair on this. A doctor at MD Anderson told me that the main reason gals go off it in around a year is because of the hand/foot problems. Best of luck.0
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I had started on x about amonth and a half ago i took it for a couple days shy of two weeks and then got abad cold running a fever and the whole nine yards so mo took me off so i could heal from the cold and i was getting ready to have a hysterectomy and she was gonna take me off it for a couple weeks during surgery anyway ,im getting ready to start it again on the tenth but she also lowered my dose to 2 in am and 2 in pm for 2 weeks and 1 week off . and im a little nervous getting back on it as the last couple days i was on it i had se bad but then of course i couldn't tell weather it was from the coldi had or the x .so im trying it again and i was also told to take a sick pill about a half hour before and then to eat something then take my pills .so will try that also . for the first week and a half i had no side effects but the last few days like i said though i didn't know if it was from being sick or pills so will find out . if you have any other suggestions i would love to hear them .thank you chris
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Chris, only other suggestion I have is DRINK WATER AND MORE WATER. I start the day with a quart of water sitting on the countertop. That reminds me to drink it. I then fill up a second quart that lasts until bedtime. I did get the nausea pills but have not used them yet. This is my week off but notice my stomach still feels a little off and on. I think having small meals during the day helps. I also enjoy a short nap every afternoon which I can do as I am retired. I try to use the sanitizer wipes at the grocery store and have no grandkids or young children around so don't worry about catching their colds. Good luck. Also, everything I read says to eat and then be sure to take the pills within 30 min. AFTER eating?0
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Linda İ hope the Gemzar journey is tolerable, haven't had that myself yet.. Currently the sleeping girl sooo fatigued on X.. No complaining, though.. Nothing much to do anyway.
Carolben, yes İ'll be starting my 19th cycle tomorrow & the fatigue is cumulative.
Missed quite a while on this thread.. Hope the ones still here are doing fine & the ones moving on do much better with the next tx.
Hugs all
Ebru
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ebru
you have been so helpful to me and iam taking all of your advice plus some im willing to do anything if this tx works and get everything back under control .im open to any and all advice I can get
thanks chris
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