All about Xeloda
Comments
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Chickadee thanks for the reminder on the molasses thing i did it years ago to raise my hgb. i started having really bad cracks on the corners of my mouth and mixed vit e and some acidophiles it worked great just a pass on. on my first break so far so good little nervous about getting taxol when i'm taking the X will see wishing everyone good days
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Hello Divas! Looks like I'm joining you after only 5 months on Tamoxifen. Scan results today showed increase on liver mets so onc wants me to start 2 on 1 off from next week. Need to have a brain MRI as I've been having headaches which hopefully are just migraines ( intermittent)
Wow this is one hell of a thread to get through so I guess I better get reading. Don't suppose there's a top 10 tips anywhere?
Feel a bit sick...
Laurie0 -
Welcome Alesta, Tamoxifen didn't do me any favors either. Without reading this whole thread my tip is to ask for the 7/7 schedule if your Gastro issues are primary. I can make it to day 6 before my stomach and colon rebel and by the evening of day 7 I'm thankful for the following week off. Day 3 today and I'm just feeling weary and more like hibernating.
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Hi Alesta, I also do much better on the 7/7. You will just have to really find out what works for you. I hope you find it to be an easy chemo. I have been on quite a few and I guess this one seems the easiest. Lets just hope it works. I also found it to be a very expensive chemo
as a former government employee. Good Luck. Hunkydory 0 -
Alesta, there is another Xeloda thread that is titled Xeloda Care Tips. No one has posted on it sinceearly April but it doeskind of condense some good info.
I am on the 14/7 and my owrst time is the off week. Otherwise I do pretty well other than the Big D. wreaks havoc with some electrolytes. It is a very do-able chemo
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Have managed to get to page 10 so far and have looked back at Kathy's pinned thread.
One thing I meant to ask. I know that fatigue is a big thing for most folk and I work 2 days one week and 3 days the next as a nurse specialist in alcohol which involves wandering around the hospital and assessing patients. I know it's going to be a 'suck it and see' thing since we're all individuals but has anybody worked through Vitamin X?
Laurie x
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Hi Laurie! Welcome!! You asked for some "top tips".....make sure you moisterize your hands and feet well to help with the hand/foot syndrome. Also, ask your onc about taking B6 for that. Mine recommended it and I think it does help. You'll need to ask how much you should take though - he has me on a lot more than what is recommended on the bottle. Make SURE you take the X WITH FOOD. Not an hour later or whatever....these pills can really do a number on your tummy if it's empty. I had some nausea at first with this so now I take a Prilosec every morning - works great! For me, those have been my only real se's. I am on the same schedule as you and I am working FT - have been all along. I do have some fatigue at times, but it's not bad (not like when I was Abraxane, for example). I still exercise and lead an active social life. I know some have a lot of trouble on X (guess it's like that with every chemo, huh?), but I find it very tolerable (not fun, but definitely doable!). Please feel free to PM me if there is anything I can do to help.
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not sure where to post this I'm needing feedback anyone else out there that has not had a masectomy i was dx with IV brain mets in oct. have been doing taxol herceptin and now x and was just wondering. thanks love this placeand all of u
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Braids, you could start your own thread. There are different thoughts on surgery. I ave not had a MX
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Cost was mentioned somewhere recently. Genentech has a card that helps w co-payments if you meet certain requirements. My prescribing pharmacy signed me up. I pay 11$ per 14 day course. Check it out if you didn't know about it.
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Thanks for the reminder twistedsteel! I have that card too! My co-pay for each cycle is $12!!
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My onc reduced my doseage. It helped with HFS and was/is still effective therapy. Original dosage was 1500 MG IN AM/1650 MG IN PM. Reduced to 1500 MG IN AM/1300 MG IN PM.
After lots of experimentation, I found the following products to work the best for HFS: CalleX Foot Ointment and Burt's Bees Hand Salve. Hope this help.
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Hi Laurie,
I'm on 14/7 regime and have no side effects, not even fatigue (well, I wouldn't take up pole-vaulting as a hobby but certainly more energy than for the last four months). I think the side effects depend very much on the dosage you are given. My oncologist thinks 2000mg a day is appropriate for me (I'm small!) and he told me (and I have read in several medical information sites) that Xeloda is often prescribed in too heavy dosages and that a lot of doctors are decreasing the amounts and the patient feels better and the treatment is still effective.
Hope your scan results are good and that you feel well on the Xeloda.
Barbara
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Thanks to all for the advice. Think I may be starting on 2000mg twice per day. I'm quite small 5ft 4 and just under 9 stone so hope this isn't overdosing!
Just ordered a new pair of Crocs and back from GP with a bag of goodies including sleepers, Ativan and something for the migraines.
Have MRI brain booked for Friday afternoon with them phoning through results on Monday. I'm going to need those Ativan over the weekend...0 -
That sounds good, Laurie, don't think you will have a problem on that regime.
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Wow, Laurie, you are tiny!! To me that sounds a little high, but eveyone is so different. PLEASE just remember that if you start at that dose and the se's get too bad, talk to your onc about lowering it. I know I've said this before, but it's probably pages back now.....we reduced mine by 300mg a day and I saw a big difference! I was shocked such a small reduction made such big difference in my se's.0
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I am on 2000 mg twice daily, 7/7 and am finishing my first cycle of xeloda. I am only 5'2 and 120 lbs . Some fatigue,stomach upset but otherwise okay. I guess I will see with next cycle.
Mari
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hello divas!!!
like many of you i have been on multiple boards...when one thing works, etc. etc. tried all the AI's without much success...faslodex didn't work either...just finished 2 rounds of abraxane...which according to my onco. was supposed to have the least amount of s/e....and in his words i ended up with an "idiosyncratic reaction" so i can no longer use that...so i am now on the xeloda....have read not all of the posts, but many...have started using cream on the feet and hands....and would love to have some feedback on a couple of things...thank god for these boards. i can't speak for all of you but i am finding i get most of my information from the boards, not from the onco's or the chemo nurses...in every one of my treatments no one sat down with me at the dr's office and said "okay, this is what the typical s/e are....this is what you should look for, and this is what you can do to minimize it" have you all had that experience?
onto the xeloda.....i was given a starting dose of 1000mg in the am and 1000 mg in the pm 7 days on, 7 days off...given my extreme drug sensitivity i changed things a bit. i started the xeloda on tuesday and have been taking 500 mg in the am and 500 mg in the pm. i figured i would start it lower and go up, than to start high and end up back in a hospital because of drug reactions. so this is day 4 of the low dose....i already have tingling in the hands, and feet. have started to use lotion on them. i get the shakes, and my brain doesn't feel like it is working properly. the BIG thing however is that on day 4 with the lower dose i am beginning to have diarrhea...according to what i can find for information, i am in a "grade 2" at this point.
i was not given any instructions by my dr. as to what to do if this happens...some of you mention immodium...i used immodium with the abraxane and was chewed out by the nurse for using it, they don't like you to use it...so i am sitting here thinking...well, what to do? continue the low dose and see how it goes? take one immodium and see how it goes? stop the xeloda? call the dr. and tell him i haven't been taking the full dose and why and what has happened....i won't hear back from anyone until at least monday..just continue what i am doing and see if i can make it another 3 days? for those of you who have experienced the diarrhea problem...how did you handle it? how did your dr. tell you to handle it?
any thoughts, suggestions are most appreciated!!! i really, really don't want to start yet another chemo...please! i just want one, just one to work!!! and that i can tolerate!!
thanks!
mary
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Well, I'm 5 ft 2 - l think I win the 'tiny' competition!
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Mary
I'm a complete 'Novice Diva' having only picked up my prescription for X today so I don't as yet have any personal experience, however I spoke to the pharmacist at the hospital at length about SE's since I've read so much about them.
I specifically asked about diarrhoea and she said that it was fine to take Immodium, provided I wasn't having 'explosive diarrhoea' (!) more than 4 times per day. If that happens, I should stop taking the drug and call the onc.
As to the dosage, my understanding is that most people seem to get some sort of SE and it's about titrating the drug so that it is tolerable to take but also effective. 1000mg per day seems a bit low to me, however I'm no expert. I'll be taking 1500 in the morning and 1650 at night, based on my body surface area. I would be inclined to continue as you are (since you're worried about sensitivity), take immodium as you need it and see your onc asap.
Hopefully others with more experience will be along with an opinion soon.
Laurie x
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Hi Mary-- definitely tell your onc right away about the dosage you are taking. I've never heard of anything that low-- even 2000/day seems low to me, but your doctor will know best and they base it off the surface area of your body.
I take immodium when it gets bad, but try not to. I find that I can control things better with diet. It's a boring, low-fiber, low-fat diet, but it seems to help. I find greasy foods are the worst for me. The better I eat, the better my whole GI system does on the Xeloda. Salads don't work, but cooked veggies do. I eat a lot of potatoes, yogurt, toast, peanut butter, bananas.
Also make sure that you are getting enough fluids and nutrition. Sometimes if the D is bad enough, your body isn't getting all of the nutrients out of food that it should. I make a lot of smoothies with protein powder and even use slim-fast shakes sometimes to give myself a boost. Lots and lots of water helps.
Keep up with the lotion. If you start to see white spots on your feet that look like blisters under the surface of your skin, deflinitely call the onc. But the burning sensation is normal, unfortunately. Keep up with the lotions, doing it constantly even during your week "off" will help.
You might ask your doc about a referral to a nutritionist. My cancer center has a few and it can be helpful with a drug change to talk to someone about what foods might help. I think it would also be reasonable to meet with your onc or nurse to talk about drugs. When I start a new chemo, I get some time with my onc's nurse, where we sit down and she goes over everything with me. I also have the option of talking to the pharmacist, they usually have a lot of knowledge about side effects, etc.
Hope this helps!
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I am starting cycle 5 today.
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Thank you!!! It does help! I have been on the BRAT diet ever since the 2nd dose of Abraxane...messed up my stomach very badly...along with probiotics etc. From the research I have done, the 2000mg/day seems to be the way MDA, Sloan, Penn oncologists are trending...and from the articles I picked up online. The package insert has it much higher but I guess there have been trials done at the lower dosage..
I am encouraged to know that at least one medical institution sits down with you and goes over this stuff....cause mine doesn't....nor do I ever see a pharmacist let alone talk to one. Thanks again for sharing!
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Hi all.
Chiming in on the dosage. My mom started xeloda 3000mg per day and was doing great. Then HFS and fatigue kicked in around cycle 5 and her onc just had her lower it to 2000mg per day to help with the hfs. She is 5'6 and 145 lbs.
She started X in November. Her feet were darkening and peeling really bad but it was the tingling and very heavy feeling in them that really bothered her. She couldn't walk on them. Her big toenail started to come off a couple of weeks ago and was just removed two days ago. Mom was even asking about possibly switching to an AI due to her hfs and fatigue but onc wanted to keep her on X and see if lowering the dose would help. He also did say the decrease in dosage will NOT affect the effectiveness X. It's been two weeks on the new dosage and she is feeling Sooo much better. Hfs symptoms decreases tremendously. No real fatigue or anything.
Her first set of scans in February showed great improvement. We go back for another scan in early June. Hoping for more improvement!!0 -
Thanks so much for this! Good to know your mom has an oncologist who listens! I am glad the lower dosage helped with s/e. I am going to stay the course for the next few days and see what happens. What I am noticing is that after I take the X within a couple of hours I am in the bathroom...that seems to go for several hours and then it stops. For me, it is just easier to start at the low end and work my way up...thanks again for the feedback!
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Hello, everyone! My mom is on her 6th or 7th cycle of 2on/1off X and Tykerb. She's been feeling good -- better than when she was on Taxol/Herceptin. Her main side effect so far seems to be muscle cramps. Sometimes laughter brings on one in her side. Craning her neck around brought on one in her neck, and she's had a few that happen in her jaw and make it hard to open her mouth for a few seconds. Anyone else experience that?
Her fingernails are doing better on X than T, but her toenails seem to be getting worse. No big intestinal problems or hand foot so far, but she does think her hands feel a little hot now and then. She'll make a cold drink and switch it from hand to hand -- don't know if that is helping keep H/F away, but that's our theory.
Lots of lotions all day and night on hands and feet, too. First scans in March showed a little improvement in liver mets. Next scans are in 3 weeks.
BTW: Has anyone heard from suz45 ? She hasn't posted in over a month and hasn't logged since the 8th. I sent her a PM a few weeks ago, but never heard back.
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Well looks like I'm joining you. My onc has started me on 4000mg daily and said if I have bad side effects she will reduce dose but to try and control se so that doesn't happen. Then had me meet with pharmacist who gave me run down of se and how to controll them. I'm on my second day, so far so good. How long does it take before the se's hit?
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I find day 4 or 5 my Gastro issues start to bother me. That's why I asked for,the 7/7 schedule. I can tough it out to day 7 and recover. My left leg, ankle and foot swelled almost immediately. It has receded but not completely. Its fluid retention. We ultrasounds for DVTs and thankfully that's not a problem. I have not had the HFS. Lucky me.
Had CT this morning, see onc on Tues to see if anything good is going on in liver. Fingers crossed.0 -
I asked my onc at Dana farber about doin 7/7 and she said it has not been proven to be effective and would rather reduce dose than shorten cycle. She's a young doc and I sometimes wonder if I would be more comfortable with an older one, but she graduated Harvard and her dad is a colon oncologist so she grew up around medicine. I'm putting a lot of faith in her brain.
I'll be thinking about you on Tuesday , chickadee and will be looking for good news.0 -
Frapp, here's the study on the 7/7 if it helps.
http://jco.ascopubs.org/content/26/11/1797.full
I don't think I could go back to 14/7. If this isn't working I'm real intrigued by the Sir Sphere treatment.0
