All about Xeloda
Comments
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Lynn1: Just to commiserate - I too worry deep inside that my dose is too low, especially as my SE are there but not too bad. Hard to shake the worry - especially on dark rainy low days like today. Keep the faith, hon, I'll try if you try! Sue
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i really had a bit of a rough time this cycle.. i think i will take TWO weeks off. my onc. has already blessed this decision.
I had a rehearsal last nite and my brain was simply not working.. eek. I'm better today. Coupled with the tight skin on my hands, i played like an idiota.
Marybe.. that seems like good news to me.. hope you continue to rally.
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Judie: Hope your ankle is healing up ok.
Marybe: Me either....I don't think I have thought "why me" either. I figure that none of us are getting off this planet alive so something has to take you. My lot in life is breast cancer. It could have been colon or lung or parkinson's or 100 other things. Everyone has something they are dealing with every day. I used to LOVE Party of Five!! I guess my chemo brain is at work though because I don't remember Charlie having cancer. I have never watched the Big C.
Sueper: that is quite an increase in txts from 10 to 28! I'm sure you were surprised! Hope it all goes well - do keep us updated.
Sarabeque: Welcome!! Wow, that is AWESOME that you are now on maintenence at only 1,000 a day. Gives me hope! Have you tried any sleeping aids - some Ativan or something? You could take it as needed - doesn't have to be every night.
Sueopp: Thanks for commiserating with me!! HUGS!!!
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K-Lo - or should I say Franken-boobs,
you had me laughing so hard, I like the name and it certainly fits so that is what I shall call them. With all of the scars and the way they are different, one up here the other down and over there, it certainly says it all. You always seem to make me laugh, and I can tell you love life to its fullest no matter what. That is just great. Since I am having this done on Halloween they will definitely be Franken-boobs. I had originally wanted to have the tram-flap, where they use your stomach, but I needed to have both done, that was the first time someone told me I did not have enough fat for two, of course I thought we could have made 4 or 6 of them but I guess not. I think 19 years ago there were not to many options and living where we do it was kind of limited also.Sue - I am glad you were able to go to play practice. I have found that I always feel better when I have to go somewhere or run errands, just getting out of the house and being "normal". I do not work so have lots of time on my hands to think, of course I love to read, do decorative painting, and am always doing something but when you are home by yourself doing some of those things your mind starts to wander so it is nice when we can do normal things.
Marybe - I have had people say to me don't you ever ask "why me" and my reply to them is "No, Why not me? What makes me so special as to think I should not have a problem", they think about it a minute and then see where I am coming from. So I have never, ever asked that question either. The first thing I do is to thank God for letting it be me and not my children or husband, it is easier for me to handle me having this than for me to try and handle my girls or husband having it.
Livingit - I hope you are doing OK. Have not heard much from you and am praying all is going well for you.
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Thanks for 4,000 mg, going back on it next week just don't know the dosage yet, drs. on Tuesday...
Livingit, where are you, worried?
It is truly amazing how differently this medicine works with everybody truly shows how we are all individuals within our bodies....
Sue so happy that you could practice, I know it sucks, but that is something that you love...keep it up.
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Marybe...
You were the first person to pm me here, with kind words after my RFA, and it meant so much to me! I was so in awe of your endurance, and I thought hey! Maybe I will be able to hang around for awhile yet, after reading your inspiring posts. Anyway, I've been following you (and all of the AMAZING ladies) on this thread, and I'm glad that your scan results were better than expected. You roll with the punches, and I'm convinced that your sensible attitude plays a big part in your longevity! Keep it up for years to come!!
I wish every one of you the best... as always...
Rose.
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Gas Anyone??
Hello ladies... just started my second cycle. I haven't had any more nose bleeds. My problem now is gas?? Or just the need to BELCH! My chest will feel tight/uncomfortable....then out of no where comes a nice belch and I feel so much better. But the time waiting for the belch to come is miserable....
Has anyone experienced this? My nurse said to try some Gas-X....
Thanks in advance for your response!
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Hi Dana! Yes, me!! Onc said it was very common and told me to try Prilosec. I take one every day now with breakfast (even on my week off) and it has improved a lot. Maybe not gone entirely, but MUCH improved! Hope it will work for you too!
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yep had major gas...
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Hi, ladies. I hope all is well with everyone and you continue to handle side effects without too much discomfort. Marybe, I am thinking of you and hoping your onc has a good plan. I just started Vitamin X last night and I swear my feet already look a little red. There is no pain yet but needless to say, I am nervous. Thanks to all of your info I have Bag Balm, Udder Cream, gloves, socks, Prilosec, and Biotene. Am I missing anything?
Susan0 -
Hi Susan! Some get diarrhea on X, so get some Immodium too - just in case. I always have to be different, so I have constipation - I stock up on Colace!
Try not to be nervous....only a few, it seems, get really bad se's on this one. Hope you have NONE!
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Insurance company kicked up a bit at the Xeloda...I will start it as soon as it comes in the mail. If I want to pick it up locally it costs $40.00 more per cycle. It is ALMOST worth it not to have to deal with the "specialty pharmacy" that is attached to my health insurance. After miscommunicating back and forth since Tuesday, I got verbal confirmation it would be shipped this afternoon, for Saturday delivery. I have bag balm, and organic wild-crafted shea butter (no other ingredients)...do I need Udderly Smooth as well? Where can I find thin, soft gloves? Thank you in advance!!
jeanieb, I think the same thing about being glad it is not my husband or my children. Agree about keeping busy and trying to FACE THE LIGHT as much as we can.
On that note, I had scans today--CT of chest and abdomen and full-body bone scan. Trying to just put them from my mind until Tuesday-ish, when I will slowly but surely turn into Tasmanian Devil Sue who spins until she gets what she wants!!! I have no more medical appointments until the 26th with the rads onc and the 4th with the med onc. Seeing my PS Tuesday to get that pesky top stitch taken out, so it willl have some time to heal before radiation.
You guys totally get it about the play, and the kids, and the JOY.
Can't wait to stick my toe in the water!!
Sue
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Sue, They had the gloves at the pharmacy I use....it is sort of an old fashioned one, but when I asked they took me right to them. They are called dermal gloves. I also have a pair a friend gave me and they have AHAVA printed on them so I assume the company that makes the lotion and cream by that name carries them. We have appts on the same day, the 26th.
Dana, If you feel like you need to belch, try eating some baking soda....it works every time for me.
Apple, I have a feeling that even though you felt your playing was not up to par, you could still play circles around the rest of us....or maybe I should just speak for myself, some of you could be skilled pianists for all I know.....anyway, I saw some of your videos and know how gifted you are.
I am still a X diva....am taking my two pills in the AM and two PM until they are gone since no one told me to stop and who knows maybe they are helping.
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bump for kim
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Hello Divas
I am no longer a Diva. I had progresssion in the large bones of my arms and legs. I hope to get into a trial at MDA. Good luck to all!
Bettye0 -
Aww Bettye. Please keep us posted. We all learn from each others journeys. How's your pain?
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Hi Everybody!
Sarabeque: The SEs you describe are familiar to me from my reading on X as well as my ... what was I talking about? Just kidding. ST memory is shot and balance and sleep are in the mix too. Its all pretty normal for the drug. I wish you luck with it. The main deal is the Hand Foot sydrome (HFS) which is why you hear everybody talking about lotion lotion lotion. Read back on this thread and you too will become an HSF diva.
K-Lo: I know you are, but what am I? RE your "character" comment. I know its true and Im glad it comes through in typing as well as in person.
Marbey: So good of you to share scan week with us. I like getting to know you. For my part I'm pissed that the liver tumor is big and that the X didn't give you the stable result you (we all) hoped for. Also, thank you for sharing about your friend who is having such a tough time after aggresive tx. I feel like that kind of thing is so far off for me, but then I read that Navelbine (Navybean to me) can burn your viens and my onc says that nulasta (new nasty) is down the road for my next chemo... and I just think "Well this is it. After X its all down hill and I'll have to decide when to call it quits."
Crazy thinking, I know, but there it is.
Sueper13: Im so glad to hear about the chirstmas pageant and the kids and most of all your joy in it all. I hope you can post some pics for us when the time comes!
Blondie: Keep on truckin girl. I had tearing eyes on some tx or other and finally figured out that it was actually dry eye! Who knew? I tried some ointments which just bugged me and settled on artificial tears and they did help quite a bit.
I havent posted so much cause Ive been too lazy to go downstairs to find my laptop, steal my husbands charger and log in. Week Two... Ive been pretty tired, some other SE's some pain on and off. I also quit smoking after a 'relapse' of a couple of months and changed pain meds from oxcycontin to fentanyl. So, alot going on for my poor old carcass. Im doing well today. Both kids are off having fun with someone else and DH and I are chilling at home. I made breakfast with some help and then climbed back in bed for a 4 hour nap. Since I woke Ive been still in bed watching silly TV and relaxing. It feels GREAT! I guess I could try to be productive, but Im sure the impulse will come sooner or later.
This evening I get to go to my first demolition derby EVER! My sons dad (not my husband-never was) is taking Will, so my husband, daughter and I are going. The bunch of us are the family unit these days and its working out pretty well. My parents were a bit snobish when they raised me in upstate NY so I cant WAIT to see the derby. I was worried this morning that I wouldnt make it but since then Ive slept like crazy and put on my new pain patch so Im sure now that I'll be in fighting form and ready to cheer!
Happy fall thoughts to everybody.
Zoh
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oh Zoh I love them.....glad you are getting out of the house...
I did get Diarrehea...and had it till last week.
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Livingit....Navelbine did not hurt my veins one bit and nuelasta is nasty, but taking Claritin before you get the injection and again after helps, believe it or not. It sounds sort of crazy and I was thinking oh yeh, right, but I swear it didn't bother me when I took the claritin. When I got it the lst time, it was BAD....like having a really bad case of the flu....ached all over and had a fever. I did not need neulasta with navelbine or Xeloda....got it when I was on halaven because that one took my white count down.
Today my friend was in ICU....last night she was having horrible pain and it was a bowel obstruction and then they discovered she had fluid in her lungs and was having difficulty breathing....so they are keeping her there over the weekend and Mon they will aspirate the fluid. She did 2 1/2 yrs of weekly chemo and I am sure most people do not get that aggressive of treatment....she is supposedly in remission now, but they won't know for sure since she and her husband have decided no more treatment and no more scans. So it's really a catch 22 and all goes back to that quality quantity issue....I am greedy and want both.
BettyE, Are you doing zometa or Xgeva for the bones?
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QOL is really important to me, sorry for your friend, it is so hard!!!
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K-Lo I don't have pain. Oh sometimes my hips ache, but that could be age too. I am 63.
Marybe, I do get XEGEVA every month. I did not show any improvement until I started XEGEVA.
I believe in this drug.
I also have spots on my liver. What will be next? Nobody knows!
Bettye0 -
Bettye, man, that really sucks.
Zoh, you sound like you feel better!
Marybe, sorry about your friend. (And thanks about the gloves. I know just where to go Monday morning and what to ask for.)
Blondie, I am starting 1500 mg. twice a day tomorrow and I am glad your diarrhea finally went away! I will try to post pictures of the play but may have to direct you to my facebook page. (I AM THE ANTI-GEEK).
Sue
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It's here. I'm officially a diva. Or, will be, after breakfast. Sleep well, all!
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Hey gals,
I follow this thread daily even though I don't often post. So thankful to have all of your perspective. Marybe - big hugs to you, been thinking about you a lot.
BettyeE - best to you with the progression. :-( Let us know what is next.
Sueper13 - NO kidding on the stupid specialty pharmacy. I have had a horrible time getting my drugs shipped to me and my copay is $75 each cycle. I had to yell at them and threaten to file a complaint with the ins commissioner. It is a long story, but if I wasn't such a squeaky wheel I'm certain I would not have received my drugs. So frustrating!
As for side effects, I have not had diarreah yet, quite the opposite. I was nauseated to the point of throwing up, so have been taking zofran. Wasn't really expecting the nausea/vomitting even though it is listed as a SE.
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Ok, Marybe...they changed my meds - Abraxane not working. I received my first shipment of Xeloda yesterday morning. I was amazed at the kindness of the FedEx delivery guy - apparently my treatment center's pharmacy must use him frequently - he knew I was new on his list and told me that 'we will get you through this' and had some good info to share about the pharmacy - and the pharmacy was just a sweet in making the arrangements. 7 days on, 7 days off - 4 pills in the am, 4 pills in the pm.
I was correct in one of my theories - I do have a problem with the acities, they have gotten larger and the fluid is still there. I continue on the Avastin, Xgeva and the hemoglobin booster. Now the xeloda and another drug - I was a bit shocked so I don't remember but I go in two weeks so I am thinking I will find out.
I didn't get diarreah yet either - but the former drugs caused constipation so I am continuing on the Senakote since today was awful. Oh well - I will get the hang of this one too! The onc offered that this would be a good time for a second opinion, things have changed and it would be a good time. I was stunned, again (this was a day of stunner's). I simply had to say that a second opinion was not something I would do. When in the hospital for 8 days in August, it showed me the versitility of my center - having a 'substitute' onc for the entire time was amazing. He got right into the case and I felt comfortable. A third onc got into the mix with a complete review of my case files - complete from 1998 forward to assure that nothing had been missed. I like the lab - the lab tech was not satisfied and when the head of the lab expressed her disatisfaction with the results and trashed them and had all the cultures redone. Honestly, who would want a second opinion when my team just jumps right in when they are not happy - keeps me informed and 3 brilliant minds (along with the labs), makes it very easy to communicate and totally confident in the care I am getting.
Keep you all posted on my condition - still researching - thanks for all you help
Hugs
LowRder
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Dana. that gas will likely be diarrhea soon.
Sueper.. http://www.opentip.com/Tools-Auto-Industrial/Lightweight-Nylon-Inspector-Gloves-p-2467908.html
inspector gloves
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Lowrider, welcome! This drug seems to be a good one for many. Watch out with the Senakote, baby. Have some immodium really handy. You can start with one-half but have em with ya.
Super: I bought dozen of gloves when Doxil beat me up. PM me and I will send you some as they are taking up a drawer.
Zoh, (fingers in ears....). la la la la la can't hear you! :*D0 -
Lowrider, Sorry the abraxane did not work for you, but that is the one chemo I hated.....really hated, even if it was working for me. I did not get diarhea with Xeloda,....found that when I have to go, I really have to go and and get there right then, but it's not full blown diarrhea and I was really sick of being constipated. Sorry your stunning day was stunning in a bad sort of way.
I think cotton gloves are better than nylon...more absorbent and if you use bagbalm believe me they will get greasy in a hurry, but I am telling you my hands are just oh so soft.
Hope everyone is having a good day....it is what Winnie would call blustery here today....wind is blowing leaves all over the place. My husband is too lazy to rake leaves, my back won't allow me to do it, so that means we are going to have to hire someone. I am hoping winter doesn't come too soon because I still have lots of flowers blooming.
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K-Lo: Im rubber, you're glue....
Hey everybody. Im on a week off. I like it better than a cruise. Still talking naps of 4-5 hours a day, but what the heck. My dreams are crazy fun with X so why not. I am in a better frame of mind. I like being into cycle two and not being so afriad about what may come. I like knowing what to expect.
I know right? I hear y'all laughing.
Gotta tuck Willie into bed and take some ativan to sleep because I took ritalin to wake from my nap because I had to watch him use his new ripstick. (a wacky new kind of skateboard) It was sooo fun!!!
nighty chemical night everyone.
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Thanks Marybe for the tip with the baking soda.
Apple - thanks for the warning. I am usually constipated so maybe it will balance out.
The gas was so bad on Friday that my onc said I can skip a dose or reduce... I skipped a dose and felt so much better. Isnt that STRANGE?!?! Maybe I am not drinking enough water when I take my pills.
Sueper - my co-paymet is $32. When I saw how much these pills cost at full price, I was thankful for only paying this much. GEESH!!
Thinking of you all!
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It is outrageous what they charge for drugs. Once we hit the $6000 max out of pocket and the deductible, everything is covered at 100%, including Rxs and co-pays, but I still always look to see what they are charging. Right now we are fighting with, well I should say appealing, two claims from a lab which are from cell searches that I had done LAST year?! Why it took so long for them to surface is beyond me. I used to have that test done all the time...always hated it when he did it because it shows if the cancer is circulating in the blood stream and God knows where it could move to, but my onco thought it a more reliable test than tumor markers. So now the ins co has decided it is not a valuable diagnostic tool for metastatic breast cancer....sent a letter saying some onco board had determined that. However, I know some insurances still pay for it and why did they pay for it before and won't now? I could make some money selling all the left over Rxs I have in my hall closet...it looks like a pharmacy in there.
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