All about Xeloda
Comments
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On Herceptin and Tykerb. Have the described cramps/spasms almost daily. Even the tiniest little muscle can cause unbearable pain. Fingers going spastic, especially when sewing, writing, or doing hand work. Seems to be worse the week following Herceptin, but continues daily. Never the same muscle. Had the calf ro thigh one day so bad. It took hours to get it to relax. Theragesic creme is a last resort to get relaxing. I try tonic, massage, hot water, hot compresses, and Flexeril. Small price to pay to continue to be alive. Mainly a nuisance, and sometimes is just laughable. (DH and I tend to laugh rather than cry. In 3rd year of bizarre symptoms from several chemo treatments, surgeries, rads, drugs, etc. But I do sympathize with those getting these cramps/spasms - THEY HURT!
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Sue: Thanks for the suggestion of Cetaphil Cream. I'll try it too. Eventually I have to come across SOMETHING that will work, right?!
Kathy: I'm not sure I'd call my hands "blotchy", but sometimes they are red and sometimes they are not....sometimes even in the same day they change. Makes no sense to me!
Marybe: I'm sorry about your cramps. I haven't had any like that....yet. I hope you can find some relief from them!
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For xeloda related cramps, spasms and etc. I think it would be best if we all get a hunky masseuse! SUE
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Marybe, I agree with you on how different doctors are with treatments. Thanks for the soap suggestions, I will have to go to Evelyn & Crabtree and see if they have the LaSource body wash, I always like something with a little fragrance. The oncology nurse gave me papers she had run off and then gave me a sample of Xeloda, a months supply, along with the info that comes with it and even some things in there were a little different than she told me. To prevent mouth sores she said to mix 1 tsp of salt to 1 quart of water and rinse after eating or at least 4 times a day, the paper said 1 tsp of salt & baking soda. I am sorry you are having muscle spasms, they are certainly no fun, I hope they do not continue. Is there anything they can do to help with those? Oh, the wonderful SE everybody gets, but as long as it works I don't care I guess.
Lynn1, I start Xeloda on Sept 12 (I had to wait 2 weeks after radiation) and the painting seminar is Sept 15-18. Thursday night is a picnic and Friday, Saturday the classes run from 9-9 and Sunday from 9-5, so it is tiring, I know I can go back to the motel room and rest but I don't want to miss anything
. I have bag balm so if I need it I can use that. I will get some of the Oil of Olay along with the stuff Marybe said she uses. I appreciate your input on this and I am sorry to hear about your foot, I really hope it gets better soon and you do not have any more problems. I hope your scans come back good, then it makes it all worthwhile. Keep us posted on your test results. 0 -
I like the hunky masseuse idea..
thanks Sue for the idea of the cream, a friend of mine got me 3 of them and 2 of them are really greasy, udderly smooth isn't, so will try the Cetaphil Cream......
Apparently I am on it for a while if it is working, I will say the lymph nodes that have cancer in them under my arm is not going down although the mass that was on my lung that protruded up has gone down......
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Jeanie: I started Xeloda on 7/12 - so we'll be exactly two months apart! I also get the results of my scans on 9/13 -- the day after you start. Hope I can be an encouragement to you!! That does sound like a full, but fun, weekend!
Blondie: I guess that can be a double-edge sword with being able to physically feel them. I'd probably be checking all the time!
QUESTION FOR ALL: Not sure if you all read the article in the post "NYT Article on Stage IV BC", but in it they talk about this lady who has been on Xeloda for 3 years and while it says it causes her hands and feet to crack and bleed, she still runs marathons!! So seeing that made me wonder....what really IS the role of all these lotions and creams?? Is the goal to just keep the peeling to a minimum? I've kinda thought all along that my goal was to wake up one morning with no peeling. Instead, now I'm wondering if I just know that I'm going to have some peeling, but not extreme? What IS extreme anyway - how do I know when it reaches that point? Now my right foot is starting to peel too so I'm trying to figure out what to do. Any thoughts on this? BTW, I got some Bag Balm on the way home from work and I'm going to try it tonight.
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Marybe - I am having all kinds of cramping/siezing of my muscles since last Thursday - mostly starts when I'm sleeping, wakes me up in blinding pain (posted about this last week with what I thought was rib pain - pretty sure it's muscle - that side started on Thursday - lasted until Sunday morning - Monday, it was my biceps on both arms - like a charley horse. Today, came home early for a nap, went to sleep with bicep pain, woke up when I rolled over and now it's lower right side near the rib area. OMG - it was awful, could bearly get out of bed, then I took 4 ibuprofen and now I'm much better. Still hurts, but not sharp and blinding pain. Two more days of this cycle, two more days of this cycle, two more days of this cycle.
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Hey, Lynn,
Since my hands did fully crack and peel on Doxil, I decided that the future creams and gloves were to minimize the friction that would worsen it.0 -
The onco I saw today said to try Hyland's legcramp with quinine for cramps and spasms....I told him how I was drinking tonic water and he said try this, it works much faster.....looked it up for me right then and there. I do not think the onco I have been going to would have done that. He said I seem to be tolerating the Xeloda well so as long as I am said he would just continue the 14 day plan. Soooo, time will tell.
K-Lo....my INR today was 5!! so it is off the warfarin for two days again and will check on Friday. This onco I saw today said he thought that since I do see a cardiologist for an atrial myxoma I had, he thinks they would approve me for that new drug. God, I hope so since it is supposed to be easier to regulate and you only need to have it checked once a month....this going in every few days is for the birds. I know you said you were doing fine on it so just another example of how we are all different.
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Hey Marybe, this is my third INR ever. Finally got therapeutic. Who knows what's next? What do they say about the irregularity of the xeloda? I figure my INR will go down next Monday after the wek off
Which new drug? The new pill? Wooooohhooooooooooo0 -
Laying low with this head stuff - had an MRI yesterday which showed that yes, I do have a brain, and the good news is there is no cancer in it, lol! I get to take a little extra break from both my Xeloda and Avastin, which I won't complain about! It will give my WBCs an extra week to come up a bit.
Lynn - I asked my doctor about why the lotion, and she said to reduce friction and minimize the cracking. She's willing to tolerate some peeling etc. in her patients as long as it doesn't affect QOL or daily functioning.
No cramping for me, but my joints make me feel 30 years older! Ugh!
Have a great weekend everyone! I'm going to Washington DC with my family, and I'm going to do my best to pretend I've never heard the word cancer!!0 -
yea Suze35.....
Me have been having cramps in my legs, hate them...
love Washington DC if you go to the zooo tell the Panda's I said hi!!! Have fun!!
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I am pissed, just lost my post. Anyway there is a pic on this page and it has a pill and says A chemotherapy bill for metastatic breast cancer and it is You guessed it, Xeloda. I clicked on it and then you can read about it. Has a big warning about how it can affect blood thinners....intensifies them which explains my 5. INR. Also it has nails and halr loss listed in possible SEs....Do they ever give the same story twice on treatments? Seems like they are all different.
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Suze, you are funny. I hope my brain shows up. Lost my phone tonight, smuggled a bottle of coke into the movies in my purse but forgot to put the cap back on.... In my purse.....
Marybe, are you oozing or are your gums bleeding? I only have a little nose ooze. INR of 5 must be a little nerve wracking. Your body must compensate somehow, you think?
Kathy0 -
Suze: Thank you for asking about that. That makes sense, and I understand more now. Hope you have a great time in DC!! Cancer? What's that?!
Marybe: Those are possible se's, but I don't think they are common. I think they just have to put that out there in case it does happen. TXGigi is the only one I know of who has reported hair thinning. I know it's hard, but try not to worry about those.
Kathy: Oh no about your purse!! I can top that though. We went to an Italian restaurant where they serve you rolls in a bowl with garlic butter. We were done eating and had pushed the bowl full of melted garlic butter to the side. Somehow, I still don't know how exactly, I hit the bowl and the whole thing dumped into my purse!! It reeked of garlic and was sooo greasy! I tried everything to get it out, but no luck - had to buy a new purse.
My update: So I finally broke down and got some Bag Balm. I don't know why I felt so silly buying it - just awkward....like a man buying tampons - lol. Anyway, that stuff works!! OMG! I could tell a difference in only ONE night! All the peeling is not gone, but it sure looks better and doesn't seem to be getting any worse now (where it was getting a little worse each day). Finally!!! My search for the perfect lotion is over! Now, what to do that pile of others that didn't?! ;-)
So I freaked out a little last night. I met a friend for dinner and forgot all about taking my pills with me. In fact, I didn't even think of them till I has been home for awhile. It had been at least an hour since I had ate, but I did have more than usual for dinner (chips and salsa are major weakness of mine) so I was still full and all. I wasn't sure if I should take them or skip them, but I decided to take them anyway. So far, so good - no upset tummy or anything. Whew! I've got to do better about remembering them from now on!!!
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I recently hit my one year mark on Xeloda. It's doing a great job attacking the cancer, but the hand/foot issues are there. I remember back to the time I called the NP because they felt and looked so bad. She had me come in, took a look and had me stop taking the drug a couple of days early. At this point on their best days, my hands and feet look worse than the day I saw her for a quick look way back when. I keep my hands and feet covered in Aquaphor and plastic bags/nitrile gloves about 14 - 16 hours a day. I can handle two or three hours without the gooping, but that's about it. They get so dry they crack in the folds and that really stings.
I try to keep from rubbing or scratching my feet, but it feels soooo good sometimes. Right up there with the big O! My days of taking long walks are temporarily on hold while I'm on this treatment, but I still get around and have fun.
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that's a good description Marybe.. walking on a hunk of meat.. ha ha. I'm a bit scared of this cycle.. I am traveling by plane at the end.. hope i don't get diarrhea... ick. I have pretty good control for about 10 minutes and usually i can find a john.
my recipe for cramps is bananas, tonic water and molasses.. i suppose one could make a smoothie out of that stuff.
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Hey Lynn: I too occasinally forget the evening pills, especially when I go out to dinner, (chemo brain?) and this would completely freak me out - I don't want to miss a single dose! Spoke to the oncology nurse about it, and she said "No worries. If you forget and it's still within a few hours, have a glass of milk and a cookie or two, then take the meds". Sounded reasonable to me - So glad that you found the "right" cream for your hand/foot stuff. Regarding your discards: maybe your oncology center could find a good use for them -? SUE
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Lynn 1, I should be able to remember your start date and when you are going to have scans, being 2 months from my start date. I hope and pray your scans come back good and that this medicine works for you. Will you have to be on it long term or do you know that yet? I am just glad to hear that it is one that works well for most people. I hope the bag balm will work for you and helps a lot, I know it is good stuff. I already have some because I have used it on my cracked hands in the winter time. I am also going to see if I can find that article you were talking about, the lady that takes Xeloda and runs marathons, that is an encouragement for us also.
I am glad I found this site to be able to read how people are doing on this and how they react. I am sure when I start I will have a lot more questions as they come up. I just read on the Xeloda website about common side effects and I do see where it says pain, including, chest, back, joint and muscle pain. I have read these side effects so many times but did not remember these until I read where some of you have been experiencing them. That is one more thing I will add to my list to try and remember if I should experience them. Thanks everyone and I hope you all have a restful, fun Labor Day weekend. jeanieb
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Checking in -
K-lo and Lynn - sorry but I laughed when I read about your purse disasters! I can only imagine the mess! Glad you found the Bag Balm - I used that when I had trouble with my hands and feet on Taxotere, but I have to admit, today is my last day of Cycle 3 and since I haven't had anything in the HFS department, I haven't been lathering it on - feels gross to me to wear socks to bed. So far so good in that department.
As far as the cramping/muscle spasms thing - I am having a horrible time with that in the most random places. Wednesday, pain across the top of my shoulder down my entire right torso are capping off right around the bottom of my ribcage. Yesterday, it was so bad that I broke down and called the onc - he wasn't terribly alarmed, said it can be a side-effect of X, but can also be caused by dehydration due to X. Had me buy some Gatorade with electrolytes in it and drink a ton yesterday. He also gave me muscle relaxers to take as needed -- totally helping and I was actually able to sleep last night for 10 hours -- after a 3 hour nap for 5-8 when I took the muscle relaxer! Took most of yesterday off, working four hours today from home and going back to bed. Did I mention this is my last day of Cycle 3?? Had to force myself to take it this morning - we will see if we get both doses in today. Ready for my break. Next week - blood work Tuesday, results wednesday. Hoping TM's still look good!
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Hello, I am joining you wonderful ladies (and a few gentlemen). After 6 years NED on Femara, my liver is fully involved with multi contiguous tumors and a several small bone mets scattered all over my skeleton.
I have been reading everyone's wonderful informative posts and want to thank you all. In about 1 hour, I will be completing my 5th cycle of X--1500mg AM & PM! Each cycle has been different and almost every symptom everyone has written about has shown up except the digestive and blood issues. My feet have been the major issue with the peeling callouses and skin and extreme tenderness. My MO suggested reducing to 1000mg in the evening of the 4th cycle and I had no symptoms but then asked if I could go back up this cycle and only cut back to 1000 last night and tonight.
My LE has blown up during treatment after being well controlled for years and my MO thinks it is the X but I can live with this--it is the least of my worries.
Thanks again all and I am glad that you are here.
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Mary Ann, most welcome and informed sister. Thank you for letting us just call it X! Duh so much better. Cheez and crackers, you've had your share. You're on the same dose as me, but is it 7 on 7 off?
Real good to know they back off on the dosage sometimes rather than take time off every time. It can keep working just not shredding the skin. Kathy0 -
AmryAnn, dear friend, I sent you a private message.
Binney0 -
Kathy, thanks for welcoming me. I am on the 14/7 regimen. My MO is very flexible and willing to adjust things as needed. We were both surprised at how quickly the cancer had taken back over in less than a year (time between scans) as my bloodwork didn't reflect any changes the end of Oct yet my markers were in the 1700 range in April. Like I say in my profile, the Femara didn't just stop working after 5 years, it surrendered!
Other than fatigue, I still have no pain (other than the poor soles of my feet and rare horrible, cramps in my R upper quadrant of my torso which is also where my LE is). I do seem to be retaining extra fluid and have gained a bit of weight but don't know whether it is the X or just forced inactivity since it has been such a hellish summer here and too hot to do anything. I am also getting Xgeva which is another X but so much easier on the body than the Zometa I was on 7 years agol
I hope that your onc will let you adjust your dosage if needed and maybe it will help. Good luck!
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I am in cycle 8...I think...started mid-May. Am on the 7 day on/off regimen. HFS is the worst symptom, occasional diahrrea and cramping. My instructions said TAKE WITH FOOD so I take it immediately after breakfast and supper...not quite 12 hours apart but close enough in my book. My onc also advised to hold off on starting the next cycle until the HFS side effects get better so several times I have waited 9 or 10 days to start again instead of just 7. That's my story. Not sure how it is impacting my tumors, haven't had a scan for some time. TM's have dropped then started rising again. My biggest complaint is recurring pleural effusions....anyone have a catheter implanted or the talc stuff put in to stop recurring pleural effusions?
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Lately, I don't have to worry about taking anything with food. Because I'm a PIG! Cripes it's not like I have PMS. But it is LIKE that. I protested loudly at Publix, my husband got an earful. I did warn him first, so he was humorous about it.
Well that's definitely being witch with a B Maybe it's all the chocolate I had yesterday. Withdrawal. HEY WAIT A. MINUTE: it's the oncologist appointment Tuesday. Fudge I don't wanna go. Thx for listening. Grrrrr0 -
Kathy--I am right there with you on the PIG farm. Maybe this is a se too--I thought it was because I felt so crummy and was so sick with the Gemzar (weighed 117 when I got out of the hospital the 2nd time) and was finally feeling like myself again with X but now I am at 140 and "starving" all the time and cannot get enough chocolate--no withdrawal allowed!!! Oh well, at least that is an excuse.
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Finally got to the shore and found that the sand makes my feet feel better, so brought a bucket of it back to sit in my bedroom while on the puter with my feet in the sand!!! Feet are worse than hands, peeling all over the place and really red!!
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sand sounds really smart.. it really deskins your skin at the beach. my feet are scaly and itchy this week.
thanks for sharing apple
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Okay, so chocolate it is!
And sand, too. I love that idea.0
