All about Xeloda
Comments
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I have 25mg of Xanax, for some reason, my onc will never give me Ativan!
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Oh, and I get the Meg Ryan thing a lot..that and Jennifer Nettles of Sugarland.
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Lynn,
IMO, the regular routine is good because you are more likely to rememebr every dose that way.
No worries, Immodium is my friend.
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MustangIA,
It is strange, but a bone scan does not always show small bone mets. I am screened with MRI also. It shows a lot more detail. Are you seeing a Dr. At a major cancer center? When I first started on Xeloda I had no pain from bone mets. Then as time went on, I had really bad pain in the worst spots. Now all of a sudden no pain. I think the Xeloda is going straight to the cancer and killing it!
That's my theory until Oct and I'm sticking to it. Have you tried to touch the place where the pain is? I have a small lump on two ribs where the mets are. I don't want to scare you,just give you some Info that you might need someday. I always want to be ahead of the Dr.'s and the test.
You really need to be a Dr. To have cancer!0 -
Mustang:
25 mils of Xanax are you sure???? That sure sounds like a high dose. I thought the pills only went up to 5.0 mils?
I have had a pain in my left rib. I had it for almost two weeks. It seemed like when my stomach was full it pressed on the ribs and caused discomfort. Not pain. Told Onc about it, his reaction was the same - NOTHING. I used the heating pad.
I have a tumor on my spine which the Onc said would cause discomfort in my rib cage. I feel like I have a bra on when I don't. At night sometimes I will say to myself I need to get this bra off and I forget I don't have one on. I never wear one unless I leave the house.
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We don't use bone scans for me anymore - they were not picking up my mets. We have switched to MRI now. I agree -- you DO almost need to be a doctor!!
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im sure it is 0.25mg xanax
it is more potent mg/mg than ativan
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I am blonde afterall.....yes, it is .25mg's. My bad. It's a low dose. I had the gambit of scans in the hospital...bone scan, CT's, PET and MRI...none showed any activity anywhere else other than what was found in my abdomen. I think my scans in September are PET/CT, I'll find out next week at my appt. I will ask about MRI.
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Fast moving thread!!
Still dealing with my fuzzy head - not a headache really, just a spaceyness, maybe a little pressure. I haven't seen it mentioned, so I assume if it is a SE of something, it is the Avastin. Otherwise, I really don't want to think about the otherwise...
Gloving up at night, and that has really helped - no further issues with my hands. No nausea this time, and my fatigue is pretty good. I just don't get this drug, lol.
Welcome to any new Xeloda-takers - I hope it is gentle and effective for all of us!!
K-Lo - Yay on no more shots, over and over, lol! I bet it feels good, both physically and emotionally.
Marybe - what a lovely name. Very unusual, but so pretty.
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I may be full of soup, but that much xanaxnmight be equivalent to Ativan 1 or at least 1/2 mg, mustang.
Hey, Suze, we roll fast!
So here's a sign that my Ativan may be losing power for a good nights sleep.
I threw myself out of bed the other night. I was dreaming that i was swimming with my little nieces. a snake lunged at us. I threw my left arm out to lunge away into the water and wound up on the floor!0 -
I want to thank everyone for all of their input. It has helped a lot. I was having some anxiety, and I think that is because I remember in 1992, the first time, I took 5FU, Methotrexate and Cytoxan pills. I usually did not feel good at all for the 2 weeks I had to do that and then I was off for 2 weeks and just starting to feel good and they zapped you again. I figure this will be a piece of cake, well maybe not CAKE, more like sour apples:). I am lucky though, I think I only have to take it for 4 to 6 months and then back on Aromasin, but I am not sure yet. Is this something that people stay on for a long time? I thought it was just to get it under control and then use something else, I guess I need to ask the oncologist. I know they said to take it within 30 minutes after breakfast and after supper. I had a weekend painting convention planned the first week I am going to take it but decided I had better not go because I did not know how I would feel but seeing some of your posts makes me rethink the weekend. Thanks again everybody. I love hearing how everyone is doing, I am just sorry we are all in the same "club", now if it was a cookie swap club, THAT I would love:). You have all made me feel more than welcome to join in and I really do appreciate that.
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so I'm trying to decide..
I finished my 8th cycly of Xeloda and am on my 'week off.. The side effects on the week off are prety obvious. yada yada yada.
So my onc. said I could take two weeks off if I wanted to. My tearing eyes, fatigue and tearing eyes are knocking me out. (I had a break that did wondersafter my first 4 cycles. I wonder if I'll die earlier... and should carry on.
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Jeanieb2:
I have been on Xeloda for 20 months. Don't think there is any time span. I guess I will be on it until it stops working.
Gigi
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Mustang: Ok, I'm glad we resolved that...lol....I was thinking 25 seemed quite high! I have .5 of Ativan and sometimes I cut them in half.
Suze: hope your "funny head" feels better soon. I think I kinda know what you mean, and I bet it is the Avastin.
Marybe: thank you for telling us that about your name. I was one of those who assumed your name was Mary and "be" was added. If I may ask, how do you pronounce it...."Mary bee"? It is a very unique name and very special because of the story behind it.
Kathy: oh my gosh! right out of bed, huh?! Crazy dream!
Jeanieb: I think you stay on it until it stops working. Or, they may let you take a "chemo break" and try hormones again. I did that - tried hormones for 6 months after chemo last year, but unfortunately they did not work. It does for some though so stay hopeful! As for the weekend, you could try but just be "prepared" in case some se's arise while you are there - you know, like have some Immodium, lotion, stuff like that....just to be safe. What do you paint? I always wished I was artistic, but alas, I'm not AT ALL.
Apple: why don't you call your onc and tell them you'd like an extra week off because of the se's. I'm sure they would let you know if they think that is a bad idea. I know they want us to take as much as possible, but sometimes you just need a break in order to keep going. Wishing you the best!
My update: I went for a short walk tonight! It was sorta a test to see if it would aggravate my feet any, and so far anyway - they are fine. Did not hurt while walking and as soon as I got home I checked to see how they looked and they were the same. I hope nothing "develops" overnight because I really DO feel better when I'm more active. This was just a short stroll (slow!) but it felt so good to get out and move! Wish me luck that I keep this up!
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Apple, maybe the xeloda stays long enough to hold things where they are. After all, we're basically infusing ourselves every day. Weird they don't decrease the dose like other chemo's.
Lynn, reward your feet with a massage or something, they did good.
Gigi, I sure hope I can stay on xeloda that long. I danced at a party tonight, I felt so good.
Boogie on.0 -
Suze, I have this pressure like feeling in the back of my skull, also behind my right ear from time to time.....I don't even want to think of what it might be so I chosing to ignore it for now.
Jeanie, I would try to go to your event this weekend. I cannot swear to this, but I think someone told me you normally don't get SEs until 7 days or after.
Lynn, You pronounce my name mare uh be, or it you say it fast it's just mare be and it just sort of runs together. My mother always said she should have changed the spelling of it so people would say it correctly, but she didnt want to since it then wouldn't be her grandmother's name. I answer to most things since I know they mean me.....except telemarketers.....if they can't pronounce the name, I just say, She's not here.
Today is the 6th day of my 2nd 14 day round....so far so good. Got a doozy of a muscle spasm in my toes this morning putting on my socks so had tonic water with my breakfast.
I am going for an opinion tomorrow from a new onco so won't be going to my regular onco for my herceptin til Friday. I am hoping one of them will order tumor markers so I can see if anything has changed yet. I want to know, but sort of don't if you know what I mean.
Now it's off to work. Have a good day everyone.
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Marybe: Thanks! It's a pretty name! I love how you tell telemarketers she's not here. When I was married to my 1st DH, he had an unusual last name, so I always knew when someone called and could not pronouce it correctly, that they did not know us. Hope you get your tumor marker test ordered! Have a great day!
So I've got to go to the onc's office today for my Xgeva shot. I think while I am there, I'm going to ask one of the nurses if she will take a look at my foot and see if this is "normal" peeling or what. I'm afraid they are going to tell me to stop taking it, and I'm only on day 7 -- 7 more to go this cycle. I don't want to stop now, BUT I also don't want it to get really bad either. After my walk last night, things don't seem much worse, but I did lose some more skin around the big toe --just fell off...did not pick at it. I don't know if this is normal or not. Well, it's certainly not normal to most people. I bet most would be horrified to hear my skin is falling off. Funny the things we think are "normal" huh? Wish me luck!!
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good luck Lynn
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interesting about your name Marybe... my sister in law was named Lovey Kaye after her great aunt. She goes by Kaye.. and I just adore Lovey.
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Good luck today, Lynn!
I love the name Marybe - glad you outlined the pronunciation! Beautiful name! I do the same things - my last name is a little unusual and I do the same thing...anyone that says it wrong is not someone I want to talk to, I'm sorry - she's not here!
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Gigi, thanks for the answer, I guess I just thought it was something short term, boy was I wrong.
Marybe, I may go to the painting class, I am not sure. It is a couple of hours away from home, if it was right here in town I would not even hesitate but it is 2 hours away so I may just see how I am feeling on Thursday when I am suppose to leave. My stomach is so sensitive to most things and diahrrea can be a problem for me anytime, that is the one that has me concerned. I have quite a time with diverticulitus also and get an infection about every 6 to 8 months and end up on antibiotics, so I am hoping that is the one side effect I do not have.
Lynn1, I think you are right on me taking Xeloda for the 4 to 6 months and then going back on Aromasin, if it will work. Femara stopped working so was switched to Aromasin but it did not help with the tumor markers and that is when the oncologist suggested this treatment. I do decorative painting, just fun things, I particularly love snowmen and winter things but have done any season. Laurie Speltz is a designer and lives in Des Moines, she is the one that teaches the class, I have been painting for over 20 years but her class just started about 7 years ago and I have gone to all of them but one, so I hate missing any of them. I guess I will have to see how I am feeling.
I was also wondering what kind of lotion and soap you guys have used. I was told nothing with a color or fragrance to it and I have no clue what is a good one. I have issues with dry skin anyway and living in Nebraska, the winters really dry your skin out so I need something that is going to work well. Any suggestions would be greatly appreciated as to what has worked for you all.
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I find it absolutely amazing how some doctors tell you things and some don't....also the way the instructions on two different bottles of the same medication say two different things. Remeber a TV show way back when called Who Do You Trust? Well, I trust info I get on the message boards a lot more than I do anyplace else these days. Re soap....no one said a thing to me about soap...I like Dove myself and I also use La Source body wash by Crabtree & Evelyn just because I love the way it smells. I use Nioxin shampoo right now since I have new hair growing in and supposedly it is good for that. The only parts of my body that are getting any special treatment right now are my hands and feet and those I grease up with BagBalm or Working Hands everynight before I put on the gloves.....sounds like I am entering the ring for round 1......and cotton socks. I think Lomotil is great for diarrhea which so far I have no signs of.....I am just really back to normal after having been constipated and taking SennaS for about 18 months.
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JeanieB: that is really neat about your painting. I hope you will get to go and enjoy your trip this weekend. I also was very worried about the diarrhea since my stomach is very easily upset, but so far I've had constipation. Go figure!
No one told me anything about soap either. I use Oil of Olay Body Wash and it seems to still be fine. As for lotions - if you mean for the hand/foot stuff, I have tried: Udder Cream, Working Hands, Gold Bond and Aquaphor. None seem to work better than the other - they all equally fail. *shrugs*
My update: So while they were getting my Xgeva shot ready, I asked the nurse if I could show her my foot to get a second opinion. She looked at it and said she'd be right back. Who does she bring back with her? Yep, the NP who doesn't know anything! Gah! So I let him look at it anyway just to be nice (squashing my desire to say "go away!"...lol). He said what I already knew...the only "remedy" is to stop or lower the dose and of course we don't want to do that. I said that I just wanted to make sure it was not getting out of control. According to him, "that is not that bad". Kinda scary to me to think what IS bad then! Yikes! Anyway, I left not knowing anymore than I did going in really. They did give me a sample of some cream -- Vanicream. I will try that and see what happens. I just want to make it through 7 more days of this then I get a break and some scans to see if it's working or not. If it is working , then I can talk to my onc (who does have a brain unlike the NP!) and get his thoughts on moving forward.
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Talked to the dr. today and he said can be on Xeloda for as long as, hands and feet are peeling so trying to find the right creme, not greasy one....Udderly Smooth is the bomb but trying others...asked him about the fingernails said that they could "lift" not come off, keep the nails short and that should be better.
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Blondie, are you saying that xeloda is your steady buddy now? This drug is making more and more friends.
Am I the only one who gets blotchy hands? Sometimes it comes and goes. It's almost like spattered raspberry juice. Go ahead, tell me I'm weird. Hey, that's not much to complain about.
Week off, coumadin stable, getting cool at night. Oh did I tell you we saw a bald eagle the other night? Sweet.0 -
I don't know if this is related to the Xeloda, but I certainly am getting some strange cramps/ muscle spasms, am not sure what to call them. I was at this bar this evening with one of my friends because my husband has a friend who plays there every Tues and they have become music buddies and he wanted Tim do do some songs on his ukulele. Anway, I am not drinking these days because my INR is very erratic and I don't want my blood to get any thinner than it was last week so I was having a diet Pepsi. Well, I was sitting there on the bar stool and I got this cramp under my armpit (where my pouch is as I call it that the drain used to come out of and where they took out a bunch of nodes) that went down the side of my body and it was VERY uncomfortable....it was like I had twisted something the wrong way. Then I got one going up my leg all the way from my calf to my thigh that made me stand up and go Youch..... so I asked for tonic water and it helped. Also I have found when I am putting on socks, my toes will cramp up....or if I raise my arms to put on a shirt, they will suddenly spasm. I guess I have just been extemely lucky this has not happened to me at work....oh my fingers sometimes cramp, but I can usually push them back into place and sort of massage it out. The cramps were worse tonight than they have been and I did take my Xeloda more than 30 mins after I ate because it was too early to take it when I fixed something to eat. I don't think this is a typical SE is it? But then that would be about normal for me since it doesn't seem like I ever experience what is normal with these medications I take.
Blondie, Try Working Hands....it isn't greasy. Your nails can lift due to the Xeloda?
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Hey there Blondie, I take xeloda/tykerb and have to try to manage some serious hand/foot stuff. May I recommend Cetaphil cream? It is totally non-greasy, almost liked whipped cream, and I apply it very liberally before bed (then put on footies) and then again in the morning. It also comes as a lotion, which I keep by the sink and apply constantly. Easily available at Costco - best of luck. SUE
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Sheesh, Marybe, that's weird. What about neuropathy? Doesn't have to be an SE of xeloda, especially since it is fairly early. But with all you've been through, could there be neuropathy pain? Dr Kathy here.
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Hey Marybe, your cramps sound very familiar to me - I have some of the same stuff going on, and am also on xeloda (together with tykerb) - have read that these can indeed be a SE of the drug. Cramps happen especially at night, including what I think are called "hammer toes", "charlie horses" and various other spasms - What a pain in the backside! SUE
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No, It's not like neuropathy which I have had before.....the neuropathy for me started out like a burning tingle and then once the feeling was pretty much gone, like in my toes, they actually almost hurt and then when it moved on into my foot, it felt like I was walking on something other than my foot....I would compare it to walking on a big hunk of meat instead of a foot because it didn't feel like a foot. I was tripping over things because I couldn't feel my feet....the numbness went all the way to my ankles. When it started going into my hands, that was when I quit abraxane. With some of the other treatments, like navelbine, I got the tingling and burning and numb toes, but it did not take over my entire foot. Fortunately, the neuropathy did pretty much go away after I would stop the treatment that had caused it....for some people it seems to be permanant. I know that was rather a long drawn out answer, but No, this does not feel like neuropathy.
Sue, Our posts bypassed each other so I am adding this. You are exactly right, it usually happens to me at night....sometimes a charley horse will be so bad it will wake me up. Sorry you are experiencing this, but at the same time it is nice to know someone else is having this as a SE also and it's not in my head.
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