All about Xeloda
Comments
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That large piece of heel skin is hanging and my feet are burning and so peeling, and I hate wearing socks, have to get a shower and guess I will be wearing shoes and socks, but if I put the creme on won't it be absorbed by the socks.
My hands are so red and peeling and when I trying to do with dishes the hot water makes them burn so have to turn that down, guess I should get gloves for my hands and dishes, not like my kids will do the dishes......off tomorrow for my 7 days, i am so looking forward to it BUT it takes about 3 or 4 days to feel normal and then it is back on....not getting scanned til next month but the tumor markers are going down....
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Glad the tumor markers are going down, Blondie......thats a positive sign. Always is for me anyway. I am so sorry about your hands and feet. Sounds very painful. Gwntle hugs your way....
Judie0 -
Damn, Blondie, hitting you hard. Maybe onc set a high dose for you?
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Hey, Lynn, I would call and get those results before weekend. I mean, I'm a grownup I can take it. Plus, it's MY medical information. I have a right to it.
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blondie - so sorry you are getting hit hard, yay on the dropping tumor markers! I bought a dozen pair of very thin cotton gloves and they work pretty well. Maybe you could look for something like that?
Lynn - that sucks that your doctor makes you wait!!! I hate the "come to my office" attitude, because if it is bad news, then I get the pleasure of crying and being upset in front of all the nurses, patients, and office staff. Not my idea of fun. I'm lucky - my MO even gave me her cell phone number and told me to call her any time.
Doesn't it suck to only be 42, and feel so darn old?? I had a little arthritis before all this started in my feet, but now I can barely get down the stairs in the morning.
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gloves for what, have socks on now....4,000 a day, is that high??
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Blondie: I am on 4000 a day as well. I think some others are on a little lower dose. I think the gloves are for issues to the hands. Are you having any peeling on your hands? If so, you can use the gloves/cream stuff while you sleep and you may get some relief.
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Blonde One, I would not know what's high, I'm speculatin' that your doc may be zapping your body like mine did last fall and with the Doxil dose. She cares about me but holy crap, there is a limit to what I'll live with.
I find the gloves help prevent skin tears if I'm doing something rough. Sometimes paperwork is the worst!
NOW ME. Who else is getting diarrhea every morning?0 -
TXGIGI,
That is exactly what I am feeling!!!!!!!! I hope it's not bad news. I'll be ok.
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Hello from the latest Diva!
I will start Xeloda as soon as it comes in the mail. (Weird system in my town where the pharmacy gets it and mails it out, but no co-pay so Im not complaining) I think I get a gold star sticker for reading the entire thread.There is so much great info here. I am READY. I just finished my second failed tx - abraxane and now tamoxifen. I found out from todays MRI that I have brand new mets to just about every level of my T-spine and most of my C-spine. I will have a PET/CT tuesday to find out what other mets have been growing. I will be starting my Xeloda AND having radiation to multiple levels of my spine.
I HATE HATE HATE RADS!!!!!!
I went for a mile+ walk yesterday morning, but Rads make me puke all day and last time I got to the point where it was seriously tough to climb in and out of bed. SH#$#$T! I was pretty tearful today remembering how very hard it was to take care of my kids when I was so beat down by the stupid rads. Yuck.
All that said, Im glad to be a Xeloda Diva. I am confident in the drug and so glad to have all the skinny on the SE's and what to do about them. I will start on 7/14 unless I can convince my onc on Tues to let me go 7/7 from the get go. I will print and bring the information from the top of this thread.
I will be emulating Kathy and going to Amazon for Working Hands/Feet and some gloves. Im gonna go with the ounce of prevention theory. At least I will feel like I am able to do SOMETHING about the nasties. We are at the mercy of so many things on this crazy ride.
Glad to be in such good company ladies.
Zoh
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Hey, Zoh, so it's on the way and you join the very exclusive Home Chemo club. Yes, we home chemo. We just don't feel that public chemo is good enough for our family.
No kidding, I do NOT miss waiting in the IT waiting room, sitting in the recliner having my port punched, watching soap operas on the tv that I can't hear, trying not to watch the bubbles in the IV line, praying I'll get on the highway before rush hour...... What don't you miss?
Kathy0 -
Oh, I don't know. I always liked the 'princess' atmosphere of the chemo place. Everybody's all,
"Can I get you a pillow?", "Would you like me to open our juice?", "How about a snack?"
Plus there is a noteable absence of very short people yelling "Mommy" and wanting me to do physically impossible things like go to the playground for half an hour.
Its all how you look at it.
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Me K-Lo my 7 days starts this evening take meds this morning then done for 7 days, yea, although it takes about 3 days to feel alright....
Me to Livingit I get waited on there and not here.....it being at home brings in into my "safe" place...don't like that...
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Ladies: Looks like it's scan season - best of luck to Reneepals, Lynn1 and everyone else who is waiting for scan results - scan buddies sounds great! Sending love and good karma to all.
Lynn1: I too sometimes have large areas of my foot skin peel off. Have purchased gauze pads with adhesive around the edges (like a big, square bandaid) and put these one with neosporine (sp?), helps alot, and ususally heals up in a couple of days.
Reneepals: Spend 2/3 of my days in thick bedroom slippers, but have found that Grasshoppers (sneakers) rub my feet the least when I do have to be shod. Will absolutely check out Johnson's Foot Soak - thanks for the tip.
LivingIt: Glad you can join the Xeloda crowd - it's done really great things for me and many more of us. Onward and upward! SUE
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Blondie: yes, the socks will soak up some of the lotion, but it does help keep the rest close to your skin until it fully absorbs and away from your carpet/sheets/etc. My suggestion for the large hanging piece of skin is to gently trim it off near the edges. I have found if I let it stay there, then it pulls on the remaining skin and that really hurts!
Sue: Thank you for that tip about the gauze with adhesive!!! I'm going to get some this weekend! WHY did I not think of that?!
Zoh: Welcome fellow Xeloda Diva!! Yes, you definitely get a big gold star if you read all 14 pages of this thread!! There is lots of good info though like you said and I hope some of it will help you.
I am on 2250 per day, but I started out higher (3600). We have been gradually reducing to try and get the se's under control.
I don't miss the chemo room AT ALL!!! I don't miss how long it takes to get approval for them to even start the IV's. You wanted me here on this date/time, WHY must you get approval again and WHY does it take so f-ing long?! I also don't miss seeing the really really sick people there. I hope that doesn't come across the wrong way, it's just that I know one day I will be in their shoes probably and it makes me sad -- interrupts my trip down D'Nile. :-\
So I had my PET/CT this morning and I'll leave for my MRI in about half hour. I am sooo disappointed though. I asked for a copy of the PET scan on CD and they gave it to me, but it looks like they didn't do it right - keeps coming up with "no report". ARGH!! I really wanted to see before Tuesday!
I wonder if I call them on Monday would they send the written report directly to me?
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Lynn - fingers crossed on your PET... I hope you can get a copy of your report ASAP.
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Lynn - Glad the scans are almost over..now the waiting. I really hope you can get that report earlier and post us some good news!!
LivingIt - Welcome. Wow - you read the whole thing? Impressed! It moves pretty fast and I know I've missed some of it, but for the most part try to stay current.
K-lo - No on the Big D - have you tried all the over the counter type drugs to help stop it up - Immodium? I don't know - that sucks so bad. I hope you get some relief soon.
Blondie - good luck with this next 7 - hope SE's treat you kindly.
Me: Finally completely pain free today from that muscle spasmy thingy I was having - doesn't it figure - I start cycle 4 tomorrow - one day with no pain...yippeeeeee!! Oh, well, if it works, I'll deal with it. My scans have been officially scheduled - PET/Ct on 9/27. I will soon be in the throes of scanxiety with you all. Going to see a movie and munch on some popcorn tonight - The Help - to celebrate my pain free day! Have a great weekend everyone.
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Y'all! I'm scanning Sept 19. Maybe we should all schedule the same day and time!
Hey Mustang, me being the only morning diarrhea girl makes me special.
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K-Lo: I think there is a lot more than morning diarrhea that makes you special!! I've read your posts on here. Rock on with your bad self!!
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Hey, how much B6 is supposed to be helpful? I found 50mg capsules
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YIKES!! The Xeloda pills came today. Now they are just SITTING there.. looking at me.. The thing is that my doc said to begin by taking 1500 2x/day. So thats three pills. OK.. But I have to bring my son to karate in the morning, and then pick up his friend to come over here for an overnight. DH will be out with our 3yo at birthday parties till 7 or 8. SO.. umm.. Im pretty much going to wait until tomorrow night to start. Call me a scaredy pants, go ahead.. Im thinking I'll throw up and fall into bed and then loose all my skin in the first 5 hours.... Shees.. Over react much?
I do feel bad having the meds and not using them, but I just dont want to get sick for ONE MORE DAY. (drama drama drama)
K-Lo, I too found B-6 in 50mg and was going to ask the same thing. It IS up in this thread somewhere as I recall, but Im too lazy to try to find it.
Mustang: Pain Free Wonderland Mamma!! Many Happy Returns!
Reneepals and Lynn1: When are your scan results due in? Next week sometime yes? Forgive me if I misremember.
Im going for a whole body PET/CT on Tues at 9AM and Seeing the doc for results at 11AM. How COOL is THAT? I F*&%*ing LOVE my cancer center and my onc and his heavenly scheduler, Jan, may she always find the cool side of the pillow. I pretty much never have to wait more than a couple hours for scan results. AMEN. I hope we all have great news. Then we could get a virtual chocolate cake and party hard.
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Livingit, Hopefully you won't get sick at all. I take mine with food....I do the 2000 mg per day....2 500mg tabs in the AM, two PM and do it for two weeks on, one week off. Are you doing 7 days? One thing the onco at MDAnderson told me, normally the SEs don't manifest until maybe day 12 (that's if you are doing two week) so maybe on the 7 day, you won't even get SEs. Just be prepared.....I believe in preventative. I have a Rx for nausea if I need it and I started greasing up from day one....use bag balm or working hands and wear gloves and socks to bed. So far I have only completed two rounds, but so far so good. It is normal to be scared.....we all are.
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Thanks Marbe,
I just realized, we are neighboors. I live near Lexington, KY. Nice cool weather of late hu? I love the Fall so I've been enjoying it.
Im glad to be reminded of the timeline for the SE's. Ive read with great interest your posts about MDA. I am followed there also, but haven't been down since '09. I LOVE it down there. I describe it as Disney Land for Cancer patients.
Im gonna go ahead and do this day and begin tonight. Im sure everything will be OK....
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Kathy: My onc says that B6 can be helpful, but it doesn't work for everyone. I take two 100mg pills a day. It doesn't seem to help much, but then again maybe it would be worse if I stopped? IDK! It does also help with energy, so I'm taking it.
Livingit: I know the feeling. I sat there and just stared at my first dose for the longest time. I thought I was going to cry. But in the end, I took them as scheduled. Marybe is right...the se's don't start immediately. I know it's not funny, but your comment about all your skin falling off 5 hours later made me laugh! You're gonna fit in well around here Ms. Diva!
I am sooo jealous!! You really DO just about get your results as soon as you get out of the machine. NICE!!! Oh, I now swear by the Bag Balm. It is very sticky and I don't like it, but boy does it feel so good putting it on and it has helped heal my skin better than anything, and I think I've tried them all...lol. Let us know how your first day goes!!So I did finally get the PET scan images to work (user error...duh!) Anyway, I'm still not sure all what I'm looking at so not sure I know anymore than I did before. I also got the CD of the MRI. That one I can "read" a little better since I've been doing that for several scans now. Not saying that I know exactly of course, but I'm not blind...I can see when things look different. The bad part though is you can't "compare" scans side-by-side so you have to keep going back and forth so I'm really not sure, but I'm trying to stay hopeful. Last time it was very obvious to me that there were more mets, but this time it's not so clear, so I'm hoping that they are the same. I'm hoping and praying the Xeloda has me stable again. I am really scared about this one...I've never "failed" a chemo before. Failed all the hormones, but never a chemo. The "what ifs" are getting to me this time.
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Zoh, I waited til the following Sunday as they have this pill minder box that works that way. I recommend setting up the schedule that is easiest to recall as it is hard enough with the on/off as it is.
My hubby and I have reminders in our phones, two heads better than one chemo brain. I shoot for 9 am - 9 pm; anything between 8-10 has to be okay because, get real! Plus as I said before, in the hospital or clinic, I can promise they have that much leeway. Some mornings I take half zofran just because it feels that way. Then eat, then xeloda.
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Xoxo0 -
livingit.. i don't think you'll notice any side effects. They told me it was rather hard on stomachs so I try to eat, wait 30 minutes and then take them.
Good luck
BTW - i love the chemo room.. the nurses are so nice and i love how i instantly want to fall asleep and the warm blankets. Except for port flushes I haven't been there for quite a while.
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Lynn, that is amazing that you get the scan images! You're a little radiologist there. I'm hopeful, too, that the absence of obvious bad guys is very good news. Your positive attitude is a good sign.
My Palliative/Supportive Specialist says people who are creative and positive seem to do better. Kathy0 -
Zoe... I get my results wednesday 2:00p.m..
Lynn... I afraid this time too for some reason. My onc keeps reassuring me about the many treatment options. But I freak out sometimes.
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livingit - Oh I remember that fear - staring at the pills, knowing I should take them... it isn't like an infusion, where you don't have much choice. But as everyone said, the SE's really don't kick in that quick. Just be sure to take the pills after you've eaten (I find 15-30 minutes after works best), and you should be okay.
Lynn - I'm glad you were able to get your scans. You do exactly what I do - get the scans, then sit there and wonder what the heck I'm looking at! I'm keeping you in my thoughts and hoping that Xeloda does its job. It is good you are chemo-sensitive, this will work!!
K-Lo - I hope the big D has backed off a bit for you! I seem to get hit with that during my off week. The drive to DC last weekend was, ahem, interesting.
Renee - thinking of you and your results.
I'm getting my PET/CT either 9/19 or 9/26, I'm a little on edge because I feel like one of my supraclavicular nodes is back. It could be related to my LE flare up, as it is pretty squishy, but the waiting is hard. If it is back, then I'm pretty sure I'll be moving on to another cocktail. Seems like we are all getting scanned around the same time!
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K-Lo - I am starting Xeloda tomorrow and I figure I will be right there with you with the Big D, it seems like I can look at something and have it so I am just assuming I will have that problem. Now that it is finally here I have a lot of anxiety about taking it. I took chemo 18 years ago and I am comparing it to that and how I felt, I just keep thinking an hour after I take the four pills in the morning I will be nauseated and that is probably not true. I will be taking a total of 3500, 4 in the morning and 3 in the evening. I know this is suppose to be different but I just can't seem to get it out of my head. I did talk to a pharmacist about taking the pills and she said after you eat and if you need to you could eat a little of your meal, take the pills and then finish the meal, if they upset your stomach.
Lynn 1 - I don't remember anything about B6 and I was going to quit taking it, but now I think I will continue after you were talking about it. I am taking 100 mg and will look to see what others said about it. I hope your scans are good and I admire you for telling them you want a copy, I have never thought of it but I usually find out the same day I have the scans or first thing the next day.
I was having problems that I thought was diverticulitis so my oncologist wanted to do a scan last Wednesday just in case, well wouldn't you know they called me Thursday and said the BC had spread to the upper right colon, another place on the colon and lymph nodes in the stomach, how they ever saw those for the fat that is in there is beyond me
, but anyway, they said it is all the more reason to do the Xeloda. I had a CT scan on June 2 and there was nothing there at that time so this came on pretty quickly I guess. I was a little upset when I heard this but then I just thanked God that was all it was and picked myself back up and marched on. I was wondering if anybody new how fast the Xeloda starts working, is it within the first month or 3 months or just what. I was hoping it would help right away. I see my oncologist in 2 weeks and will ask him at that time if I should take something else and what the prognosis is, I want to know that right up front. Before this it was good but who knows now. I know I am one of the lucky ones and am not complaining just venting a little I guess. I am so thankful for this thread and get a good laugh out of you guys, thanks for making me laugh, it is the best medicine and it helps having people going through the same thing. 0
