All about Xeloda
Comments
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Hey general question for y'all. Do you have fevers and or sweats? I don't think it's hot flashes. Just drenching sweats and temp 99.5. Doctors don't get concerned til it's over 100.5 as you know. But it has become a way of life nd I wonder if any of you have the same? Thanks
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Well it actually does say on the printout they gave me as well as in different articles I have read on line, if you are on warfarin (coumadin) or any other blood thinners you have to be monitored very closely and it actually recommended you do lovenox or fragmen over the coumadin since it leaves your system much faster than the coumadin does. The insert they gave me with the Rx itself has it listed under drugs that interact with xeloda and has a big WARNING and says it can cause serious bleeding problems. Whenever I have a surgical procedure I go off my warfarin and they have me do the shots until the day of the surgery. However, my onco says I should stay on it and they will monitor me just as they do now......am not sure how comfortable I feel doing this, but maybe I will tell them I want it checked twice a week instead of once....actually I would feel safest if I had one of those little machines myself, but am sure they cost a fortune. All I know is that I want to try Xeloda since the onco at MDA thinks I will get some results with it (but he also said I should be going off the warfarin and do lovenox or arixtra or fragmen) and so many women on the message boards have had good results with it. After three failures in a row, I am looking for a winner. I will discuss the blood thinner issue again with the PA since I see her on Wed....she is easier to talk to than my onco. I got white gloves from a friend and also bagbalm and dug out some foot socks.....my feet could use some moisturizing anyway. Sometimes I get all worried about a SE I read about and am prepared and it never happens.....wouldn't it be nice if that was the case with this.
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Kathy: no sweats here. Sorry you're dealing with that.
Marybe: I am also encouraged by the good results that others here have had with Xeloda. I hope you and I will add to the number of successes! And I know what you mean about being prepared and then glad you don't need it. I had all sorts of things prepared awaiting the severe diarrhea with this, but I have constipation instead. Works for me - I'm happy to have this instead!
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if it's not one thing it's another (referring to the constipation / diarrhea issues).
I think it is worth trying to figure out if hand creams / udder creams work for you. I must be half scientist because I try cream on the right side and no creams on the left side. the left side seems much better.. much less redness and peeling.
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Apple: I have been using less creams lately based on what you said/your experience. So far, I can't tell any difference between when I do and when I don't. I will keep up this experiment a little longer just to be sure. Why bother with the hassle and expense if it does nothing!
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Re hands shredding up, it seems preventing friction is the best thing for me. It amazes me how roughly I use my hands! Dont notice it until they are sore and the top layer of skin is gone!
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I just started my second round last night, so I'm keeping on eye on how everyone is doing this time. My headaches have eased up a bit, so I'm grateful for that, but the fatigue lingered through most of my off-week, so I'm sure that will be an ongoing issue. My fingers are a little numb-ish this AM already... I hope that isn't a bad sign! I also had some bathroom issues in my off-week, but weirdly not during. Guess we'll see.
Unfortunately, I won't know if this works for me unless/until it fails - we are doing this in an attempt to prevent this crap from coming back. My MO is hoping that at the very least, it will buy me a decent chunk of time since we are starting it before I have visible signs of mets. In fact, she mentioned doing "maintenance" dosing for another 6 months after my initial 6 months of standard doses.
I hope it remains relatively gentle for all of us, and that it works wonderfully!!
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The only thing I've noticed about my hands is they are more sensitive. I was trying to remove a child-proof cap from a bottle last night and had to use a towel as a "buffer".
Suze35: hope the 2nd cycle goes ell for us all. I assume I'll be starting Cycle #2 in the morning.
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Oh, Lord. It sounds like it is a good thing I am going to keep my appt with SS this time....I am sure cleaning teeth every day would qualify as friction. But then again, I have to remember that with most of the treatments I have done, navelbine, gemzar and halaven, methotrexate/cytoxin I really did not get most of the SEs....but they didn't work either. So if I do get SEs with this one, I will almost be happy since that might mean it is working. Time will tell. Wish you all well.
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Hey, y'all, do you like to have things delivered to your door? I got nice gloves and now, 4 tubs of Okeefe working hands for under $30. Free shipping. Woooo. The little things right.
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Yipeee!....I get to do just the Xeloda starting tomorrow morning. And that one blood test they did on me was elevated so if ins approves it, I will also get to do herceptin starting next week. It was always negative before but people told me sometimes it changes so I had Dr.Cody order the test....he said it was a longshot, but maybe just maybe my long shot paid off. And herceptin is not really chemo so the PA said it doesn't come with a bunch of SEs. I am happy so hope this works out and then I will be on Xeloda and herceptin.
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Marybe, you seem to have a good team. Glad you're satisfied!
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hey girls,
jumping in just to say, I am a procrastinator and I never started with the cream and I have had no hfs so far. I am on my off week of my 5th or 6th cycle. apple, you might be onto something with the cream experiment.
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Marybe: I hope you can do just Xeloda and Herceptin too!! Best of luck!
So has anyone noticed this.....recently, I've had some tingling in my hands but not bad, and he said that might happen. What I'm noticing though is everything feels SO SOFT! Like when I pet my cat, his coat is sooooo soft!! Not that it's usually wirey or anything, but just more soft than usual. Even my own skin feels softer. I know I've been moisturizing more, but I don't think that's it really. It's not a bother, just one of those odd things....anyone else notice this??
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Oooo that sounds nice! My hands got sandpapered by Doxil so no groovy soft feeling....YET. I'm looking forward to it! Sounds lovely.
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I've just had my second Navelbine infusion and sure do wish I was back on Xeloda! Was doing some "house cleaning" on my computer and came across some info I collected when I first started on Xeloda a year ago. This was from a topic started in Feb. 2010 but thought it might be helpful for some of you:
The pain has been so bad that I have had a hard time walking. I have had these Lidoderm Lidocaine patch 5%. I was using them on my sore muscles. My boss and I were having a conversation she said she was using them on the top of her feet due to RA. Well She happen to have some at work, so there we are putting them on the bottom of my feet. After awhile my feet were feeling so good. not only that they are a gel patch so the are cushioned. I have been using them for the past 3 wks and "OH MY GOSH WHAT A DIFFERENCE" I told my ONC he said if it works great. I did some research and they have a trial in regards to this.
I sure hope those of you on Xeloda are having good results and minimal SEs.
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Thanks Allison! Do you know if those patches are by scipt only or can I buy OTC?
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Does anyone know if there is a "limit" to the HFS stuff? By that I mean if they get all red and sore and stuff, will it hit a mark where it doesn't get any worse, or does it just keep building and building? Thanks!!
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A "long" time (one year) Xeloda user here, taking 2150 mg 2x a day for two weeks on, one off. It took me from extensive bone mets and a few liver mets last August to NED in May and I just had my second PET that came out NED too. This is the first drug that has worked for me for more than 6 months. I plan to ride this pony as long as she'll go.
I have HFS and just saw a dermatologist for her suggestions. (My onc said, "hey what the heck, let's have you see a dermatologist - I don't have the corner on the market when it comes to skin issues". I love that woman!)
K-Lo I'm on warfarin too after a blot clot to the lung in 09. My INR bounced between 1.2 and 8.8 the first few cycles of Xeloda and everyone wanted me to do Lovenox shots. My husband and I created a graph with the timing of taking Xeloda, my PT/INR results and my Warfarin dosage to show how the numbers moved during the cycle. I dropped from taking 10 mg a day to 2.5.and I'm keeping it under control. I also talked my onc into letting me do more monitoring. She wrote a script for a home meter, my insurance company paid the bill and now I don't have to go somewhere for a blood draw and wait forever for the results. If it's up a bit I'll skip a pill, take half the next night and test it again in a couple of days. Easy peazy.
Good luck to all of my bc and Xeloda sisters!
Nancy
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Wow Nancy - thank you for your story!! NED is so AWESOME!! Hope you two have a loooong relationship!!
If it's not too much to type, could you share what the deratologist suggested for you? Was it very helpful? I'm wondering if maybe I should go see one???
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Awesome, Nancy. I can do testing and graphs! I know she'll make me complete 3 months on shots, but I'll be ready to fight against more! Thank you and congratulations on your hard work. Kathy
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Lynn1, I just saw the dermatologist Monday, so I haven't seen any dramatic changes so far. I'd been gooping my hands and feet in aquafor or bag balm, then wearing plastic bags and socks on my feet and nytrile (sp?) gloves on my hands. I'd gotten to the point that they were gooped up about 18 hours a day.
We stopped the gooping/bags and now I'm on prescription strength cortisone ointment twice a day for two weeks. She wants me back at that point to see how they're doing and she also wanted a little time to research what others are doing that might work. I really appreciate her checking in to it. I can put a little aquafor on with white cotton gloves/socks if I really feel uncomfortable. I'm trying to hold off, but I probably grease up a couple of times a day.
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I have just started on the Xeloda as of yesterday..two in the AM, two in the PM so am sure it is too soon for me to have any symptoms, although I swear my hands are tingling like they do when I am getting neuropathy. I have my gloves and bag balm and last night put it on both my hands and feet and wore the gloves and footies to bed. Am I supposed to use plastic rather than cloth?....I can get the latex gloves at work. Correct me if I am wrong, but as long as you are on the Xeloda or whatever drug is causing the problem, isn't it rather difficult to treat it with anything and expect it to go away? The only reason I am asking is because when I was doing abraxane and my finger and toe nails were in such bad shape, lifting up and oozing and just a horrible mess, the podiatrist who was treating me and actually took a few of my sore toenails off, said none of the antibiotics they were giving me ( the onco's office tried several) were going to help as long as I was taking something that was the cause of the problem. So wouldn't that be the case with this HFS?....maybe what we are doing will make it feel better, but it won't really get rid of the problem. People have told me they can adjust the dosage and that will help....also 7 days on and 7 off causes fewer problems. As I said I am still new to this drug so am just passing on what I have been told. I can see how the lidocaine would help since it is actually an anesthetic, but knowing me I would fall down with numb feet....I did before when I had bad neuropathy.
Nancy, I am so encouraged that it really worked for you. I am really worried about what will happen with my INR since it is up and down all the time anyway...this week it was 1.2 and they told me to take 7 1/2 mg every day except Sat. and Sun, 5 mg and I asked what about the Xeloda? and they said well, they will check next week to see how that affects it. Last week it was 2.4 and then once last month it was 5.2, but that was because I had a cortisone shot in my shoulder. I am hoping they will help me get one of those little machines for home.
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Marybe: It seems I read somewhere that you shouldn't use gloves that will keep heat in (they used dishwashing gloves as an example). To me, it's not much different than wearing socks to bed (they keep heat in), so I don't understand all that, but cloth sounds better to me than plastic.
I think you are right. As I understand it, there is nothing you can do for the HFS except stop until it resolves and then try a lower dose. The creams and stuff make it feel better, but it does not make it go away any faster. I'm worried now that I started back too soon after my last "episode" (what do you call them?). I'm only on cycle 2, day #3, and already my hands look red and feel hot and seem a little swollen - well, just the pads of my fingers seem "puffy".
I asked my onc about neuropathy with this and he said it was not like the nerve damage neuopathy I had with Abraxane. This tingling/numbness is from the HFS. I read that the HFS is caused from the chemo leaking out of the small capillaries (sp?) and so in my mind, it's like a chemical burn from inside. Lovely.
Please keep us posted on how you do. We need to come up with a catchy name for those on Xeloda!! Any ideas?
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Princesses of Peel? Gloved gals? BagBalm( I find that name in itself funny) Beauties. To me hand foot syndrome sounds like something an animal should have...like hoof and mouth....but maybe that fits since I often feel like a guinea pig.
So Lynn, you did abraxane.....that was my most hated treatment so far. I had every symptom listed plus a few more and my nails never did get back to normal and it's been over 2 yrs since I quit it. The sad thing is, it worked and I sometimes wonder if I should have stuck it out....quit after 22 treatments. I don't have much good to say about avastin either and I got those two together.
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My hands seem different every day of the cycle.. sometimes fine, sometimes a bit swollen and puffy, sometimes a bit sore and sometimes very red and peeling.. always, however, they are functional.
I just like to experiment. My onc. suggest B6 for neuropathy.. I don't find that it makes a difference.
good luck you all.
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Believe it or not, I don't have much peeling at all....guess the creams are helping in that aspect. ? I admit that I find Bag Balm a funny name too. I haven't even looked for any...it's like I can't take it seriously with a name like that! I'm kidding...I'd use anything that works, but it's still a funny name!
Yep, did Abraxane from July to December 2010. At the beginning it was with Avastin, and it was hard! Abraxane alone was easier, butI think I was already so beat down from the Avastin that I never "recovered". Was so glad they let me try hormnes again for 6 months. They didn't work, but it gave me a much-needed break - physically and emotionally. Sorry about your nails.
Mine grew back ok, but they are just more weak now. I'm hoping they will get stronger again one day, but in the meantime I just keep them gel polished for added strength. With that, they grow like crazy. Abraxane - even alone - worked great for me too! I just had to have a break. My onc mentioned the other day that we could still go back to it and inside I just groaned. What a decision when it comes to that....take it and hope it works again, but oh the se's to endure. So this morning I'm playing Dr. Lynn. My hands are very red and tender. It's only 4 days into my 14 days. I don't want to stop because I worry that I need to keep something in there fighting this cancer. It's only cycle two so all total I have had like 18 days of this is all. But I'm afraid the HFS is getting worse. So this morning I decided to just reduce the dose even more and see if I can keep taking it over the weekend and then see how things are on Monday and call and let them know what I did. I think this should be ok...I'm not increasing the dose so shouldn't hurt me. And if the hands/feet don't get any worse, I could tolerate this I think. Wish me luck!!! I'm not a doctor, but I play one on the weekends! ;-)
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Apple: that's interesting to hear....that they change....maybe I'm just in transformation right now? I'm taking B6 and obviously not working. Or, it IS working and things could be much worse. IDK!!!
I'm taking 100 mg of B6 with each dose (so twice a day). Is that what you are taking?
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I read about using henna for the burning/pain of HFS. Here's a link for how to make a paste:
http://hennablogspot.com/how-to-use-henna-to-treat-hand-foot-syndrome/
It sounds like it really works to relieve the burning.
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Lynn...
I took the B6 and didn't think it worked either. Blah. I think the trick is finding the exact dose that keeps you on the edge without toppling over into h/f hell. I toppled and had serious blistering which crippled me. The redness and burning was tolerable as long as I could walk. I would rest my weary feet on bags of frozen peas at night and it felt sooooo good!
I think we should call ourselves the "Queens of Xeloda" or something royal... we deserve a title. Maybe the "Xeloda Divas" and we can be super bitchy and demanding! But whether it's Queens or Divas, there must be strict rules to never EVER touch our feet!!!!
xoxo
Rose.
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