All about Xeloda
Comments
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I;m on day 10 of cycle 10 and am really doing well. I attribute in part to the hydrocodone.. I wake up with such pain in my hands and feet. I limit my hydros to 4 a day.. I'd love to take 8. my onc. says it would be ok but i say no.. I have to save my liver for those liver mets that might pop up. My nurse practicioner said I was actually one of their best Xeloda takers. yay for me.
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Nancy, that IS weird and hard to understand about dosing vs schedule but i bet she has a rationale. Share please, doc?
Apple, you get A ++++++++.
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Hi Ladies! Well, I tried to stay away, but as usual, I could not. I've read back through some of the posts, but I've missed a lot so I apologize for not being around at the time. I did look at the photo posted by Nancy though. OUCH!! That looks incredibly painful. It is good to read that they are a little better now.
I'm empathize with those having nosebleeds...they are very scary! I have not had any on X, but had them big time on Avastin - so much so, I had to stop it. I also had never had a nosebleed in my entire life so when I had one that gushed (sorry so graphic, but it's true) for almost 45 minutes, I was freaking out and ready to go to the ER! I guess saying ER was the cue to make it quit though..whew!
Blondie: How are you doing now that you've been off it for awhile? Are you feeling better and more healed up now?
Hope I didn't miss anyone...if I did, I apologize.
I finshed my 2 weeks off and am on day 11 of Cycle #4. Doing SO much better this time around. Very minimal peeling, redness, and pain. I think the break did me a world of good and got some of it out of my system. I can totally tolerate this if I can keep it at this level. Just hope it's still working on the nasty cancer cells in there!!
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Lynn, I hope you liked your break. Mine did me good, but Im on too much already. yalll are the only ones who get it. Maybe ill try to find stage 4's here again........
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I am beyond thrilled about the break, I am starting to feel whatever normal means. Hands and feet still peeling and the nails are still lifting alittle, eyes are still watering. It will be 5 weeks on Friday since I have been been on it and guess it just takes a really long time to get out of your system. Thanks for asking!!
Missed you Lynn hope you enjoyed your break!!!
K-Lo definately get it.
Got scanned this morning, he only did from neck to diaphram, I am interested in my bones, he is interested in my lungs to see if the X is working...
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Hi Everybody! I'd love to post to everybody individually as I usually would, but Im pretty sleepy just now after a very nice long day of running around. Im on day 3 of cycle 2 and all is well. I saw my palliative care doc today and we continue to reduce the pain meds and she is moving me from oxycontin to a fentanyl patch over the next few days. It should be great not to have the peaks and valleys during the day. Im so big on pain control as I crash when Im having pain and thats no good for the fun and adventures of parenting.
I was glad to read the posts about nose bleeds. I havent had that, but I have had a wild increase in some familiar bleeding Ive had for a long time (
gross alert***) from a pesky anal fissure. (Its not a GI bleed - no worries) I was trying to figure out if I needed to call about it, but I'll just consider it my own style of nose bleed for now...
Good wishes and hugs to all.
Zoh
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Blondie, glad you enjoyed the break! NANCY, those hands, omg. Lynn, glad you're back. K-lo, Zoh, hi.
My margins were not clear from my recent surgery removing the part of my sternum w/a met inside it. I totally didn't see that coming. I have felt SO much better since surgery, even with the pain and soreness from surgery...all the signs pointed to the cancer being GONE (even just for now)...not to be, not right now anyway. There is a tumor conference in Dallas with a bunch of heavy-hitters and apparently my situation is odd enough for my case to be presented there. Possibilities are going back in and removing the rest of my sternum....Xeloda and rads...some combination thereof. It's REALLY disappointing. Today has been a rough, rough day.
I see the onc on October 11th.
I can't wait. NOT.
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"Princess Xeloda" - I love it! Sue
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super13 - So very sorry for your upset and disappointment. Hope things will be better for you soon - sending good karma your way. Sue
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On day 10 or so i have to apply hand cream a million times. Where does it go.. One would think one would gain weight from all the added oils.
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Oh, shit, Sueper.
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Sue! I am so sorry about the margins! What a disappointment indeed!! Hopefully there will be some good suggestions for you from the conference in Dallas. Sending you a great big cyber hug!! ((((Sue))))
Apple: LOL! Mabye mine is collecting my stomach and thighs!! ;-)
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Sue sorry about the margins also, it sucks totally....
Agreed Apple. haven't been on X for almost 5 weeks and they are still peeling and have to use it almost once an hour.
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Apple, Great idea. I can hear me saying "yah, that's the ticket - my weight is going up because I'm carrying around all of the goo I've applied to my hands and feet for the past year". I understand why my shoes are tight, but why has it moved to my waistband too?!
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Dr. just called no progression, stable and some leisons are gone X worked, yea good news!!!! He said when I got in 2 weeks we will put me back on X just play with the dosage!!! He said the leison on my 6th rib is gone also. He said that it is still there, some dramatically better.....Good news, about time!!!
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Hello Xeloda Divas,
I'll be joining you gals soon, just waiting for pre-auth on my insurance. I didn't read all the posts, so sorry if I missed this, but what dosage do most of you take? My prescription is for 1500 mg twice a day, 14 days on, 7 days off. Is that typical?
Also, I'll be taking 50mg of Cytoxan daily. Is anyone else taking both?
How soon do side effects kick in?
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Blondie: Woo hoo!! That is fabulous news!! I'm so happy for you!!! All that suffering you did was worth it in the end I guess huh!!
Hi Nancy! Welcome fellow Diva!! You mean you didn't read all 20 pages?! LOL! ;- I think the dose varies quite a bit -- I'm very interested in the responses you'll get. I am on 1,150 twice a day; 14 days on/7 days off. I started at a higher dose, but have had to reduce due to se's. This amount is working really well for me as far as se's go, just hope it's keeping the cancer at bay as well. I am not taking Cytoxan. Side effects from the Xeloda will probably start showing up by the end of your first cycle or maybe a little before, but (generally speaking) they do not happen immediately. Hope this helps! Again, welcome!!
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Blondie - What wonderful news. I am soooooo happy for you, that had to make your day a great one. It is always so good to hear that it is working.
Nancy - Welcome, I am just sorry it is under these cirmcumstances, but the ladies here are so wonderful and helpful. I took 2000 mg in the morning and 1500 mg in the evening for 7 days on and 7 days off.
Lynn - It is good to see you back. I hope you are refreshed and feeling great. I am still in a holding pattern so will find out on October 20 if I get to continue on with you Divas or have to switch to something else. I am hoping he will let me try this again but if not, oh well, that is the way it goes and will move on to whatever needs to be done. I will continue to see how everybody is doing though.
Sueper - I hope with the best of the best looking at your situation they will have the answer you need as to where you go from here. Sending good thoughts your way.
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Go Blondie. Not suffering for nothin'.
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You guys are right, still suffering but it is ok, the news is awesome, I have never had this in 2 years of treatment....stable works, no progression works, even it is still there but has changed dramatically..
Thanks so much!!
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I am on 1000 mg twice a day. 7 on 7 off. I will have scans next week . The first scans shied some healing. I want to see lots of healing this time.
My SE's are manageable. I do have to stop a day or two early because my feet get so tender.0 -
Yea Blondie! So happy or your good news. Nancy: Welcome, and sending good karma your way. I take 1000 mg xeloda twice a day, 7 days on and 7 days off (together with daily tykerb). Was on a higher dosage to begin with, but was lowered due to side effects - was assured that this would probably not interfere with effectiveness, and he was right. Xeloda has been kind to me and given me great results - hope it's good for you too. Sue
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well that is nice to hear, hands and feet are still peeling, as I said drs. on the 18th and we will decide.....4,000 was way too high, although it worked still too high!!
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Sue: I am so glad to read that -- that the reduced dose is not hindering it's effectiveness. That is what I worry about. I want to keep my QOL good, but I want the cancer cells QOL to suck! ;-)
I'm on the 14/7 plan so I'm trying to calculate how much I'm getting vs how much you get on the 7/7 plan. Math is NOT one of my best subjects, so please correct me if I'm wrong. In a 28-day period, on the 7/7 plan, at 1,000 mg/twice a day, would be a grand total of 28,000 mg. In 28 days on the 14/7 plan, at the same dose, it would be 42,000 mg. Did I do that right???? I'm thinking I did not because I thought the 7/7 plan gave you more meds. ??
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cycle 10 - day 14... egads my hands and feet hurt.. Still i had a rehearsal last nite and played for a couple hours.
I am very proactive and i think it's important to be. I wear gloves constantly.. slather creams, soak my feet about once a week or two then rub them down.. somes DDDH does this.. I also stretch the skin on my hands so it doesn't tighten. I had cracks the week i was out of town because i didn't follow my little routine.I schedule my 'wet hand' work all at once. i don't wear rubber gloves but i think I'm going to break out that package of them today.
so glad xeloda is working.
I am going to discuss how much pain meds i can take on these final days. i take four 5mg, 325mg hydrocodone tabs a day.. I'd like to take 2 million. I lay off them after the pain goes away during my off week.
What do you guys take.. if anything for neuropathy.?. ouch!
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Lynn - I tried to do the math also, like you did and came up with the 42,000. I took 3500 mg a day for 7 on and 7 off, and if I figured right that would be 49,000, and that would be more than you got for the 14 on and 7 off, but I probably did not figure it right. I wonder how the doctors know how much to prescribe for each person, and the schedule, other than like I said before, my onco said they have had better luck with the 7 on, 7 off, less side effects and people are not missing doses due to SE's. I know they are all different just as we are so it probably just depends on their experiences with it.
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Jeanie: At 3500 a day, I also come up with 49,000. Since I'm at 2250 a day, mine would be less overall since the per-day dose is less. I guess I'm just confused because I thought someone said once that the 7/7 plan delivers more meds total. Maybe someone on that plan can help us!
I understood it was based on your height and weight. I asked mine about the 7/7 plan, and his answer was that "we are going with standard procedure". I had intented to push the subject, but we seem to have the se's under control on the 14/7 plan so I haven't asked again.
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Lynn - I agree with you about doing the 14 on if you are tolerating it, why mess with a good thing. I suppose if it starts to become a problem then you could push a little more and see what he says. I know my onco said when they gave the 14 on, 7 off, people had more SEs and they would have to miss doses so that is probably why he said I would actully get more by doing the 7 day cycle, by not missing a dose or several doses due to SEs. I am hoping he will let me try it again but I won't know for a couple of weeks what he has planned. I am so glad to hear you are doing well with it and tolerating it for the most part. I have to say the only thing that bothered me was nausea and I finally got that somewhat under control with the right dose of Zofran. I find it interesting how we are all treated differently, how some handle it well and others not so well. Thanks for letting me know how they figure the dose also, it makes sense.
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Just curious...how many of you gals work full time while on Xeloda?
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Apple: I'm sorry you are dealing with so much pain! Have you told your onc about this? I do not take any pain meds at this time.
Jeanie: Great that you found the right combo for the nausea -- that can be a hard one! Please keep us updated as to how you are doing and what they say in the next 2 weeks.
Nancy: I work full-time, and that includes an hour commute each way. (I always throw that in because it can be tiring so sometimes just getting to work and back is a battle!)
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