All about Xeloda
Comments
-
had to share this because it made me laugh. Last week I told someone that the working hands was making my hands so smooth that my fingerprints are gone. Last night I was watching CSI and the victim had no fingerprints. They thought it was suspicious but then the dr said it was because she took capecitabine. I've never seen that listed as an SE. So now I have to learn about the drugs in taking from CSI?! Lol. Anyhow, I googled it now and it says it is a rare side effect of the HFS.
0 -
Funny! Just looked at my finger tips & it looks like mine have gone too! They're all shiny & my skin feels tight.
Hope you're going well on X.
I'm having a morning in bed because I'm feeling a bit run down, need to recharge
kt
0 -
Just connected the dots.... I have an iphone that I can use my thumbprint to unlock it and it hasn't been working well. Hmmm that Xeloda is an interesting drug but right now it's working for me so I will deal with the missing finger prints.
0 -
Just a small update. I am half way through round two of Xeloda, and the dose is 2000 mg a.m., 1500 mg p.m., for 14 days, then one week off. I am walking as much as I can, and doing the Live Strong program at the YMCA twice a week. On Taxol I noticed that moderate excercise helped me gain energy, so I am trying to keep doing that with Xeloda. I have not had HFS except for mild hand sensitivity to warm water. I had a cold last week which kind of set me back, but now I feel ok again. I see the retina specialist on Fri, to see if the tumor behind my left eye has responded at all this month. Here's hoping. I got a chuckle out of the disappearing fingerprints story! You can't make this stuff up! Hang in there, gang, we can do this.
0 -
I am 10 days into my first treatment and yesterday my oncologist asked me to stop taking Xeloda for the last two days of the treatment. I have had chest pains, HFS (which is very unusual so early) and a whole host of SE's. I am disappointed with my body but I suppose I had not entirely recovered from the 14 doses of taxol I had this summer. but am ready to start again after the week is over. One really wonderful tip I got from my oncologist I must share with you.. Olive oil for the HFS. After having spent a small fortune in creams and lotions - the solution for me was so simple and wow it works!
Also laughing about the fingerprints. I was going to get the new iPhone, but now I won't bother!
0 -
Tigre, Its good your onc. is responsive to your symptoms, but so tough when you hoped for an easier ride thru this treatment. I had chest pressure and peculiar sensations there when on Taxol, but so far none with this stuff. Hope the break clears things up a bit. These medicines are powerful and its amazing we tolerate them as well as we do sometimes.
0 -
staring at the first pills of cycle two. Dreading it. MO told me to do 10 days on and 7 off this time, because it was so hard on me the first cycle. Had my second ixempra infusion yesterday and it already kicked my butt all night. I've never dreaded a treatment like this. Even AC. Both drugs give me the chest pain and that is such a scary feeling. Boo. Here goes...
0 -
I just finished day 10 of my first cycle of xeloda, and decided to give it a break for 7 days, because it is affecting my vision and I have had chest pains. I do find that if I take a potassium/magnesium tablet - I take the Twinlabs brand, you can get it on Amazon, it makes a difference. I have read that chemos, can lower our potassium levels. I went to a heart doctor when I had problems with Kadcyla and I was missing heartbeats, and he told me to take Potassium/Magnesium and it solved the problem. So I am doing the 10 days on 7 days off cycle, I eventually want to move to 7 days on, 7 days off.
0 -
what dose of potassium and magnesium are you taking waterlady?
0 -
Hi All
I am nearly at the end of cycle three and in a week I go to have CT scans for liver and lungs and go to the eye specialist for the tumour in my right eye, I am also hoping it is working. I really hate the eye tumur as it makes me aware of the cancer where nothing else has really. I haven't had any HFS yet but I do rub a lot of Udderly Smooth into it. Let's all cross our fingers that this drug kicks cancer's butt. It is 2 years since my Stage 1V diagnosis and I want many more now. Heheh, am I getting a little greedy?
Take care everyone
0 -
Hi,
I hope your eye tumour is responding to treatment sammiryan. I too want many more years
I think we all do!I hope you feel better soon DP, and your chest pains go, waterlady.
I'm just feeling a bit run down- very tired, sore eyes & sore throat.
The onc wants me to start pamindronate on the 22/10 then increase my Xeloda- I don't know how much by yet- but I'm already on 4000 mg/day. I hope it doesn't make me feel too crap! I want to keep working etc...& have good quality of life
Take care all
kt
0 -
I am day 2 of my second cycle. No diarrhoea, but I get a burning sensation in my stomach for about an hour after I take my tablets. I am on 2000mg am/2000mg pm. I told my onc about it but he seemed unconcerned. I am not taking any antacids as I am afraid that they may interfere with the Xeloda. I have had very little nausea but I have had a loss of appetite. Not a bad thing as I am overweight but I have lost 8lbs in the last three weeks without trying. Anyone else losing weight on this med?
Wave to MameMe. Glad to hear that you are getting on with the new treatment. Did you have neuropathy from the taxol? My feet are slowly recovering. Lots of pins and needles and a sensation of pressure under my feet when I am walking which has helped with my balance. It been 4 wks since I had my last taxol.
0 -
spring I am also day two if second cycle and same dose. I am not able to eat today and yesterday was a struggle. I lost 10 lbs on the first cycle but gained it back during my off time. I am also overweight but they don't want me losing any right now. Towards the end if last cycle I started taking muscle milk to help my energy and strength and to get more calories, but I worry about all the vitamins in it interfering with the chemo. I have had terrible stomach cramps this time, but it could be the ixempra.
Kt, that will be a big dose. Did he say why he wants to increase it?
Hope everyone is having a good day.
0 -
Springwatch, my onc has me on omeprazole everyday- I think that helps with the stomach issues.
DeleriumPie, my CT was mostly good but the disease in the L1/L2 had increased, so he thinks increasing the dose as well as the bone builder will help.
We'll see
I hope it won't be too hard to handle. I'm certainly very tired already at the mo.
Mind you I've had a mad morning worming our 2 sheep & 2 goats as well as catching 2 of 3 guinea fowl we have to go to a new home. The other one escaped so we'll get him tonight or tomorrow morning & take him down to his new home so he doesn't miss his buddies too much!
Always fun to be had on a block of land with a menagerie of animals. We need to downsize as my energy is not what it needs to be to deal with this place...
kt
0 -
DP, most energy drinks have a lot of Vit B12 and foliates. I used to drink a lot of Ensure (chocolate is my fave
but I stopped drinking it because I get this weird sensation in my skin that feels like it's woken up every cancer cell in my body. Sorry I have no other way to explain it..lol! There's also diarrhea to contend with sometimes from these energy drinks.In lieu of the energy drinks, I eat a lot of peanut butter (Jif Creamy regular) and soda crackers with milk. This helps me with the energy, strength and calories. 2 TBSP = 190 calories. Try it!
((Hugs))
0 -
Hi X gals,
I love all of the tips here. I had a horrible sore throat my first week and read back thru the X threads and someone mentioned they rolled their pills in marshmellow cream so I tried it and haven't had a sore throat since. The fatigue is tough so my life is revolving around my week off (7/7). I would like to know when some of you have developed HFS. I'm working on my 4th cycle and haven't noticed anything yet but am on high alert and am trying to taking good care of my hands & feet. I just had an apt. with my MO this week and she acted surprised that I didn't have it. Is it just a matter of time?
Springwatch - I eat a package of instant oatmeal right before my morning pills and I haven't had any stomach issues, otherwise I think I'd be right there with you. I'm on the same dose. I get a little neuropathy on my week on but I take a vitamin B6 as needed and it seems to help. I have been getting off my feet when I feel the pressure build. Its such an odd sensation.
0 -
my gosh kt! You hav a lot more energy than me. I've been glued to the couch for the most part over the last week as the steroids have vacated my system. Kudos to you running a farm!
Teen I know exactly what your talking about with that sensation. I get it quite a bit.
0 -
Kt, I am taking metoclopramide for the nausea but it doesn't seem to touch this weird stomach burning sensation I get after I take my tablets. Seriously, you were worming goats and sheep? An energetic day for me is a trip to the local shops in the morning and a bit of ironing in the afternoon. You have a lot of energy.
Lovie, Marshmallow cream isn't readily available here. I am trying to think what else I could use as a substitute. I also eat unsweetened instant oatmeal for breakfast. I add some manuka honey to it. The burning sensation is easier in the morning. It may be the oatmeal.
DP, I was told to avoid folic acid which you find in many multivitamins. I think your safe with vitamins on their own.
0 -
Springwatch, the omeprazole reduces the amount of acid produced by your stomach- might reduce the burning feeling? Maybe talk with your onc.
Delirium, the reason I was catching birds is that we are downsizing (sell our current 6 acres for a smaller property & have no animals- apart from our 2 cats) as I know my energy levels will lessen. The pony has already found another home.
The sheep are going soon- so that just leaves alpacas, rabbits & goats!
I hope your energy levels can improve a bit
I know I have to pace myself, but it will prob get worse as the dose is increased etc. It's a beautiful sunny spring day here, nice after all the rain we've been having
kt
0 -
I love alpacas kt. I don't know why but I do. Lol.
0 -
yes spring, I saw that about folic acid. Problem is that it seems to be in everything! The couple of things that I aye/drank anyway, at least had it at the end if the ingredient list. So maybe not too much to hurt. This feels like walking through a mine field.
0 -
I must be the only one with a good appetite putting on weight or maybe it's the steroids for the eye. I am beginning to look very similiar to a puffer fish, heheh.
0 -
DP, I buy my vitamins from a health food store so I get just the vitamin and a bulking agent. I am currently taking B12 (blood tests showed I was low) and D3, because I think I should. I used to do a lot of gardening but now with the bone mets my back isn't strong enough so I don't spend nearly enough time outside. Rewind to a blood test before I was dx with my primary and that showed low Vit D levels, too. Also, there is no getting away from the fact that in the UK it rains a lot. I will look into B6. Is there a recommended dose?
Sammiryan, My feeling on the weight loss is that it is the absence of steroids which I got with my taxol and a loss of appetite from the Xeloda. Steriods give me the munchies!
0 -
I love alpacas too- they so gentle & are very curious.
I'm not taking any supplements besides vit D for pamindronate infusions... onc hasn't mentioned I need to & I haven't brought it up- wonder if I need to.
My finger are cracked & peeling a bit, like paper cuts they sting.
So vit B6 is supposed to help with that?
kt
0 -
My experience with B6 started with Taxol when the neuropathy was more severe. I took 1 100mg tablet as needed. I probably didn't take more than 4 in one day. When I started to feel the tingle coming back I would take another. I keep a bottle in my bathroom, purse, car so I don't have to wait. I might take 1 every other day or less as I don't have it very often but the tingle goes away within about a half hour of taking it.
Kt - Your comment about a paper cut made me re-think what feels like a papercut that showed up on my thumb today. I put up a whole bunch of olives yesterday and thought it was from that. hmm. I learn so much from you gals.
I was also low on Vit D. as well. Which is weird since we live on acreage and I am outside with the critters and in the garden.
0 -
Lovie, I might have to ask onc about B6. (so folic acid is the only B you can't take?)
You sound like me, being on land with critters
I'm finding that I can't do nearly as much as I need to because of fatigue & the HFS thing- if I weed my fingers/thumbs get splits in them...Hence our decision to downsize & reduce the work etc- but we have a lot of work to put the property on the market yet...Hope everyone's going ok
kt
0 -
when I was on taxol, I took L-glutamine for neuropathy. Worked pretty well.
0 -
I've been on Xeloda for 5 cycles now (14 on/7 off). My TMs started at 600ish and are now 55. X and I are best friends now.
I was having a side effect where my muscles went into spasm for no good reason. I would turn my head, or lie down, and it would start the dance of the painful muscles. Onc started me on a potassium supplement, and - presto - the spasms are gone. I was doing magnesium, but it wasn't enough.
I've got some HFS, and it would help if I stopped picking at my darn fingers. It's like when I had a bad sunburn as a kid, and would peel all the damaged skin off, even though I knew I shouldn't.
Best to the Xeloda club. Hope every one is doing well.
0 -
Well, as I end the second round of X, I have run into the Hand Foot syndrome, after an otherwise perfect weekend up at Baxter State Park. The trails we walked on were fairly flat, and we went only three miles in and out to the camps we were staying at, and four on Sunday for a day hike. I wore comfortable boots lined with soft foam insoles and had on cushy socks. By Tuesday I was shocked at how painful my soles and fingertips had become. Like the worst sunburn imaginable. I cancelled the YMCA yesterday, and cancelled my morning walk today. I am trying B6 now, and trying not to aggravate the areas. Since my primary exercise is vigorous walking, and my favorite outdoor activity is hiking, I am appalled at the prospect of having to give those up. As Sammiryan said, it is really tough to do treatments that damage quality of life when the cancer itself is not really bothering anything. I have an eye tumor also, which is the focus of treatment, as they don't think they can radiate it without risking loss of vision. Cancer really is a beast. Anyone with a pep talk ready to go, I am all ears.
0 -
Blainejennifer - You are my inspiration! You must be ecstatic. I'm curious to know since your numbers are so close to normal if you get a dose reduction? Not sure how that works because I never asked. I did ask my MO if I could have 2 weeks off at Christmas and she said sure.
MameMe- Don't give up. Listen to your body but don't eliminate the things you love. There may be days where 3 or 4 miles is too much and 2 miles is just right. Are you doing this during your treatment week or on your off week? My friends know my schedule and we plan fun stuff for my 'off' week. Toward the end on my treatment week I have noticed my feet are more sensitive and I sit down and raise them more often. While you aren't going in for infusions, do you have a higher expectation for yourself than when you were bald & nauseous? I have noticed I push myself harder. Sometimes its an effort to get dinner going so I start getting things ready in the morning. Like any of us needs an excuse!!!
0
