All about Xeloda
Comments
-
Hi winningsofar,
The first cycle wasn't bad at all for me. Only in the second, and now the third did I suffer with HFS, and only during the last part of the final week. During the whole cycle I've used different cremes, and they do help, but only in keeping the skin soft. They can't really stop the burning, as it's from the chemical in the meds and works from the inside out.
I think what happens is that if the HFS is bad enough, your doc will lower the dose to a tolerable point. It's kind of trial and error with the cremes, and many of them help, temporarily, with the cracking. They can't stop it altogether, though.
If this drug works, however, I'm willing to put up with a few days of very sore feet. So far they have improved a lot on my week off, and then are ok for the first new cycle week. So it's only a few days of real discomfort. Sofar, anyway. It may get worse if I'm on it longer.
Good luck to you. Let us know how it goes.
0 -
Dear sandilee,
Did you try liquid bandage? Too bad there is nothing that anethesizes internal burns.
0 -
Sandi, I believe you are right, the creams just help, they don't cure it. I have it on the bottoms on my feet, not bad though. Sometimes they feel worse than they look, as they don't look bad at all. And the tops of my hands are bad, not the palms. They look and feel like alligator skin! But my biggest complaint, would be the itchy rash I have all over. But like you Happy, I'm glad that it's working. I go for labs today. Suppose to go every 3 weeks, I refused and said I would go every 6. My onc is ok with me adjusting if I feel I need it, or increasing if I feel I can tolerate it. I skipped my last 3 doses and next cycle I'm taking a 2 week break.
0 -
Thanks Sandi!
I am really appreciating everything I am learning on this tread about xeloda. It seems that if this drug works for me it can also be very flexible which I wasn't finding on the hormone therapy.
Goldie-I like that you were able to go every 6 weeks instead of three. Hopefully, I can argue for that when we find out if it is working for me. I still work full time and having to take off every three weeks plus scans, ect is such an interruption of my new normal life!
0 -
Rseman, it's also a 2 hour round trip for me to do labs and my onc is 8 hour round trip. I chose the 6 weeks, because I can't see where an additional 3 weeks would make much difference if the end is near. Plus it would make me feel like I am living my life 3 weeks at a time!
0 -
Goldie,,
Years ago my husband was in chemo (5-fu and 2 others daily). He had a rash so bad he was going to quit the protocol. Haven't gone back to read your history so you may already have tried this. 2 different over the counter histamine blockers. There are two different kinds.......Ask a pharmacist. We used Benadryl and Pepsid (the acid blocker). 2 each, every 4 hrs. His rash was gone within a couple of hours. He sometimes went as high as 4 eachSo simple, if it works. Good luck
0 -
Goldie, my commute to the oncologist's clinic isn't nearly as far as yours is. It's still a haul, but not like your distance!
When my oncologist wanted regular blood tests done I drove to a local clinic to have it done. The order was faxed to the local lab where my blood was drawn. The local lab faxed the results to my doctor later the same day.
It worked great! Much less travel for me and doctor was happy to get the blood results as often as she wanted.
Kessala
0 -
Megc, I have NOT tried that. Didn't the Benadryl make him tired? He took both at the same time, Benadryl and the Pepsid?
Kessala, the 2 hour round trip drive is the closest place I can get labs! We live in a very remote area on 80 acres, off the grid and down a 6 mile dirt road that takes a half hour to drive, then another half hour into town.
0 -
Megc, I had Benadryl on hand, took one last night before I went to bed. I do believe the rash is at least 50% cleared up!!! How often did your DH take it, did he need to take it daily? I will do another one tonight. Wow, I'm amazed!!!! Thank you so much!
0 -
Benadryl helped me as well with my rash. I had the topical gel solution as well for when the rash was driving me mad. It helped me as well. BEst wishes Goldie
0 -
Did anyone experience an increase in anxiety? These last two days have been especially hard and I'm not sure if it is due to the actual medication or because this is a new switch and I am nervous about it working.
0 -
Rseman,
Yes! Xeloda has increased my anxiety. I would say that it has tripled. I've ridden it out with a few visits to the Ativan bottle, and the knowledge that it is a side effect of a drug that is - otherwise - working pretty well.
It's got better after the first few months, but will still flare up every now and then.
If it is really bogging you down, talk to your medical team about pharmaceutical relief. Being wigged out is no fun.
Jennifer
0 -
Amazing how this drug affects so many of us differently. No anxiety for me. For you gals that have that, I hope it's not from the drug and just your emotional insides.
Lefty, glad you got help with the rash too. Another thing, not everyone gets the rash!
Megc, I was so excited about how the Benadryl helped, I didn't bother to ask how your husband was doing, as well as you. Are you both dealing with cancer???
Jennifer, my PC wanted to put me on anti depressants. I refused. Didn't want another drug to take. It took me awhile to accept what has been handed to me, but doing much better and accepting it. I guess because I feel so good (for now)!
0 -
It is true that different patients have different side effects, and that not everybody has HFS. FWIW the percentage of those who are affected by HFS is 70% of all capecitabine (Xeloda) patients, and HFS is responsible for almost all discontinuation of this chemotherapy.
0 -
Goldie,
Good you got relief. Add Pepsid or another like it and you may kiss that rash goodby. As for tired, the protocol itself was vicious when he was on the drugs. When he was off, life was good. He had kidney cancer. It is rare to make it five years, he had 14 thanks to MDAnderson. He died 12 yrs ago.
My middle name is allergic which is a real problem now. Antihistamines don't make me tired. Even big doseslike 200 mg of Benadryl used for bee stings in a pinch otherwise I use prednisone.
BTY: Zyrtec might help and not make you sleepy. Ask your onc. That was my all time favorite but I can't take it anymore because of my chemical allergies.
You asked how often to take it. Ask your onc. From my point of view, you do what ever you need(experiment) to stay on a cancer treatment that is working for you.
Mary
0 -
Megc, 14 years is amazing, but still sorry for your loss. I will not ASK my on if I can take these, but I will let him know! As for Xeloda, he said we want to squeeze as much as we can out of it. But the rash just kept getting worse with each cycle. I think even the HFS is not as bad. So this makes me think I can stay on it (Xeloday) longer, as long as it continues to work. I'll add some Pepsid to the mix as well. During my treatment weeks, I have awful burning/watering eyes. I wonder if it will help with that. What is BTY? Or did you mean BTW (by the way)
Thanks again!
0 -
Goldie,
Gotta do a better job of proof reading. Was supposed to be BTW. Some of the new automatic stuff in ios 9 has messes with my rhythm in typing and corrects when it should not.
Mary
0 -
Goodbye, my Xeloda buddies. 13 months of a fairly easy regime, but the TMs are 130, and the scan says it is time to go. More spots and hotter ones.
On the plus side, my fingers will probably heal up, and my feet too.
This was a good drug. I'm gonna miss it.
0 -
Blainejennifer, I'm sorry to hear that. Darn it!
Whatever will you do with your supply of hand and foot crèmes? Just kidding!
Kessala
0 -
Good luck Blainejennifer!
0 -
Blainejennfer, sorry you couldn't get more time from X. Do you know what your next treatment will be? Please let us know, and how it works for you. My onc said he would try me on Ibrance when X no longer works. Have you tried increasing the dose?
0 -
so sorry to hear, blainjennifer. I would love to get 13 months, though. Best of luck on your next treatment plan
0 -
I'm starting X tomorrow. What can I expect the first week? I need to get my tax return done (procrastination being one of my better traits) and I just want to know what I'll have to deal with.
0 -
Hi Winning,
I had no trouble at all the first week. The second week I started to get a little bit of HFS, but not bad. Not until the second cycle did the HFS take off. It does clear up on my off week, at least a bit.
Now, I have a new SE, which is the big D. Not too often, but enough that is worth reporting. It only happened on the week off of my third cycle. The first two cycles, I actually had constipation. Weird drug. I think I will wait to restart my drug until I see the NP on Tuesday. It's a day late, but I bet they will reduce my 3000mg a day dose.
Anyway, it seems that the drug builds up in your system, so with luck you will be able to get your taxes done with no problems. Good luck!
( I think this drug is working for me. Crossing fingers.)
0 -
Hey Winning!! I'm in my first cycle of X. It has been pretty unremarkable. I think the orange bottle was the most daunting part!! This is my first time with Chemo. I did notice some nausea in the second week of taking it but nothing a little puff couldn't take care of. Nothing happened with my hands or feet.
It'll be interesting to see how the second round goes. I hope you have an easy first week!!
Renee
0 -
Thanks, sandilee and Renee. I'm hoping I have an uneventful week -- even two weeks. Sandi--are you taking something for the big D and is it working?
0 -
No, not yet. I am just not eating much (no appetite) and trying to stay hydrated. If it keeps on, I'll probably get something over the counter until I see the NP on Tuesday. Had a big banana, mango,pineapple smoothie this afternoon, and it's been better. Tonight just having a bit of mac and cheese.
0 -
This drug for the most part is pretty easy (for most). I think the dosage has a lot to do with it. My onc (so far) is ok with me adjusting it to my needs. I started out with 8 pills (4000 mg) a day, thought I was going to die. I am now on 2500. He say I can increase if I think I can handle it or even decrease if I need to. Or just decrease on the second week. I will admit, I have not taken them on day 14 or skipped day 1.
0 -
Sandilee,
Very sorry to hear you are not feeling well lately. My friend swears by Ammodium - She had to take way more than the recommend dose (maybe 13 a day at times), when she had cancer of the small intestine several years ago, and her GI doctor said it is safe. She said it worked like a charm for her and that it works quickly. I wonder if the one week on, one week off routine for Xeloda (used at Sloan Kittering, I think I heard?) is just as effective (I hear it's far more tolerable)?
I am planning on going on to Xeloda on the 14th (finishing radiation Tues). Tumor markers have gone up a lot since I stopped Ibrance/letrozole as I have not been on anything since, but my blood was knocked down very low with Ibrance (maximum dose) so maybe it's good that the blood has a chance to hopefully recover before starting a new chemo. The choices I have left are Xeloda or Taxol (really just choosing which to take first) - chose the Xeloda since I wanted to keep my hair - Hoping I am making the right choice given the difficult side effects of Xeloda, but no way to know how it effects each person till we try it.
Sandilee, I hope you get some relief soon, and my friend's advice is to keep Ammodium on hand at all times in case.
WinningSoFar, it is so stressful not knowing how these drugs will effect us, but I hope you have luck with Xeloda!
0 -
sandilee- I think Xeloda is easier on the body than taxol. I am saving taxol for when I need it so I think going with Xeloda first is a good idea. Best of luck.
for those just starting Xeloda- My oncologist prescribed anti nausea meds for the first two rounds. Said it takes that long for the body to adjust to the new meds. I took them with food and took my meds and felt pretty good. After those first two rounds I was fine. I hope your bodies adjust as well. If I take without food my stomach does get upset so make sure you have something, even a little bit of anything, to eat when you take your Xeloda.
0
