All about Xeloda
Comments
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Yeah MJL, you right. I was surprised. He's not a super creative guy. I don't think I need to change, but if this fails I will go down to MDA for a second and I know he will follow whatever they give. The system at my center is lovely. They know me so well and its the only place in the world that I can get a Pet/CT and literally walk to the next building and sit next to my radiiologist while he reads the scans right out loud to me pointing to everything he's talking about. I will need some input on chemo regime though. Maybe I should schedule a trip now, rather than wait a month till scans. That way I can have my plan of attack all ready if I need to make a change. Thanks MJL, I think you are right. I should get more info now rather than waiting.
K-Lo, Im sorry you had the headache. I hope it clears easily and doesn't come back! Your earlier post made me cry. My worst problem IS staying busy, but its backward. I have plenty to do, but so little of it can be done while asleep!
Super: I did'nt catch the quilt thing. Can you post some pics?
This morning I took a Provigil( long acting stimulant) because I have my daughter and I KNEW that when I see my palliative doc and tell her about the fatigue she is gonna ask if I took it. So I did knowing I didn't want to. Now Im too tired to be out of bed long, but I can't sleep. Makes for a long day. however I am looking on the bright side as always. It seems some skinny italian lady on the food channel is intent on showing 101 amazing things to do with Nutella. So thats pretty fun. I even think I have a jar downstairs. I usually prepare it with a carefully chosen spoon and then I add a place where I cant be caught and viola!!
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Zoh you are too funny...
K-lo, hope the headache is gone, or better either or!!
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Mucho mejor, gracias.
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k-lo, you aren't a rabble rouser.....I think some people just like to jump on anything they can and sometimes they do it without having the facts. That is why I like this thread, we get along just fine.....I read some of those others and think Oh Geeze, here they go again .
MJL, you are not butting in at all.....as they told me, once a diva, always a diva. I have been off it for two weeks now.....not doing anything at present, but I am sticking with the divas on here.
I got an email from the onco at MDA today and he said he had just finished going through 56 pages of "treatment"....most of it he said was repeat info, some pages were blank and they did not include any blood or radiation reports, but added at least it is something. Really, I am thinking I need to go somewhere that they keep better records that the place I go now.
This has been a very non-productive day. Some days are like that, yeh, they are.
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Hi everyone!,
After my cancer spread to my liver a couple of months ago, I started Xeloda - three pills twice a day. Well, I am not so comfortable anymore. My feet feel like they are on fire. For me, this is the first treatment that has really left me feeling like I am "sick". When I was on hormonals, I knew that I had cancer because of bone pain but I still felt like I was in charge of this beast. It is a hard transition to chemo because I FEEL this treatment. Yuck. Anyway, I haven't adjusted my dose because I keep thinking that the more of this stuff in my body the better chance I have of pushing it back - am I in lala land? or do you think that it is okay to take less of the med? Thanks much, Joani
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Oh others had that burning. Stay tuned for what advice they were given. I'm only with fatigue and sudden trips to bathroom at the weirdest times. Yes, you may not feel sick until you take the "cure"!
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I had my left implant fixed last Monday and am feeling much better. It did get rid of the pain it was causing by drooping so am I glad for that. I started on X Saturday, I don't seem to have many problems. Nausea all of the time but that seems to be the only SE so far, I guess I am one of the lucky ones for which I am very glad. I don't know if it is working yet or not, my markers were still up last month and I go again on November 17 so am hoping the markers will have started to go down. This sounds really funny and was wondering if anyone else had this problem, but I have this funny smell in my nose the week I am on Xeloda, kind of like a gasoline smell or something, I can't quite figure out what it is, kind of a strong smell but seems to be worse the week I am taking it. I know it sounds really odd to me too but just wondered if anyone else had this. I guess I am just odd
. The weather has been great and I am enjoying this time of year, will start to decorate for Christmas as soon as I get the lifting restriction off, which should be this week I think, if not probably a couple of weeks. Hope all are doing well. I think about you all a lot and wish everyone would have good news to report. 0 -
Strange break from Xeloda !!!????
This is the topic of a thread posted by a young woman (name Natalija) who is worried about her mother.....maybe some of you who know more about Xeloda than I do could give her some encouragement and info.
Hope everyone is doing well. I just finished watching Something's Gotta Give with Diane Keeton and Jack Nicholson.....I love that movie and it makes me laugh and feel good....plus I got a package in the mail from a friend with this yummy white choc cherry cheese dip mix in it.....and I thought she made it from scratch. Prior to all this I was in a crappy mood.....my onco still had not sent the info the onco at MDA would like to see....they keep sending stuff but he says it is just repetitious and not what he needs to see and they tell me they have sent the right stuff and of course now my onco here is out of town so they can't ask him and it just drags on and on. I left there feeling so tired I just came home and started watching movies on tv instead of cleaning off the DR table and doing some things I planned on doing. I keep asking myself, Is this intentional or are they just really stupid and don't understand how important it is for me to get my info to the onco in TX or what it is he is asking for?
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the side effects Are CERTAINLY unpredictable.. one week it is one thing - the next another.
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It changes for me day by day...I am on the 7 days on and I wonder if the X will pick up where it left off. Good luck!!
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Marybe,
I hear your frustration and believe me you are NOT being unreasonable. Get a specific list of what the MD Doc needs and go to your Dr's office and raise hell!! With your tumor markers as high as they are you don't need them playing stupid with your records!! Demand that they send the specific things they need in Tx and remember that the squeaky wheel gets the oil. i believe in being reasonable too...up to a point. But this is ridiculous and you need to get in their face. Worried about you.
Judie0 -
Hello Divas!! Been away a bit after my meltdown so I see I've missed quite a bit here!
Joani: Please talk to your onc about the dose. I have found that even a very small increase/decrease can make a noticable change. For me, even 300mg a day made a difference!! As for the burning feet, are you using lotions or creams? If not, try Bag Balm and Udderly Smooth, or Working Hands. Put it on at least twice a day and cover with comfy socks. That will help some, but really the only "relief" is either a dose reduction or a complete break for a bit. I took 2 weeks off and all my se's went away!
Marybe: I am so sorry you having such trouble with getting your records to the right place. It has to be exhausting. I agree that sometimes it seems they are doing these things on purpose, but I think it's just overall incompetence. It's everywhere. Hope it gets resolved soon! Thinking of you!! HUGS!
To everyone else, I hope you are all doing well and hanging in there!
So at my last visit they said my onc wants scans done soon. I knew he said sometime in December, but I had no idea it would be this soon! I even called back to question it, but they called me this morning and said those dates were correct. So, looks like I'll have scans on November 30th and get the results on December 2nd. I'm a bit worried why he is doing them every 2 months now (approx.) instead of every 3 months. Is he worried about something? Should I be more worried?? *sigh* Anyway, on a lighter note, we leave on Thursday for our trip to Savannah for a long weekend to celebrate our wedding anniversary. On 11/11/11 we will be married 6 years. Yep, 6 years after my mets dx! Never thought I'd see the day!
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Aw, Lynn, here you are able to celebrate 6 years but with a looming question. i can only say that every dramatic event, for me, has turned out to be liveable. hope thats true for you.
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Hey I got Xgeva yesterday and feel protected now. In fact, everything went well yesterday, my Onc nurse, ironed out insurance, coumadin and prescription problems in a snap. Feeling fortunate to have access to there helpful people and meds. And my dog smells so doggy, I love it.
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Lynn so happy that you are going away before the scans just have fun and try not to think about them...
K-Lo something positive, love that!!!
Where is everybody else?
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Do any of you take 2,500mg twice a day on the 7 week cycle? That was an amount the onco at MDA mentioned.....he said I was on an extremely low dose before and mentioned something about changes in my alkaline phosphatase levels going up and then down which he found interesting.
I am still doing nothing right now and it is making me nervous. The onco here is out of town.
Judie, Thanks for much for repsonding to that woman I posted about who was writing with questions about her mom's break on Xeloda.
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Marybe, I think you need the shovel brigade. This was invented on the "bitch and moan" thread in 2008.....visualize a pack of bald, asymmetrical women with shovels. ANYBODY who delays your records transfer or sends the WRONG thing...gets whacked in the head with a shovel.
Lynn, hope your scans are good but first I hope you have fun on vacation....we are going to Montreal on Saturday, just for four days but I get to take 2 days off radiation!! (YAY--it''s already kicking my butt!) I should be done with the rads the week before Christmas...then willl start Xeloda again but I imagine not until after the holidays I HOPE.
Wishing everyone minimal SEs and COMPETENT medical care,
Sue
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nope marybe not me, 4,000 the whole week on!!
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Sue, Hope you have a wonderful time in Montreal and yes, maybe I do need the shovel brigade. And I hope you have a wonderful time on your anniversary trip, Lynn.
Again, has anyone on here done 2,500 mg of Xeloda twice a day for the 7 day cycle?( 7 week that I wrote above in post was a mistake) ....that would be 5.000 total and sounds like a lot to me, but onco at MDA is calling to normal dosage. Blondie, 4000 per day?
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mB, I'm 3000 total, 7/7. If you're one of those who tolerates X fairly well, this might be great! Does your Onc have someone taking calls? Can MDA order it? They would order directly to your pharmacy right? Hoping here!
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Marybe,
I am taking 2000 mg per day. I take 2 500mg pills in the a.m. and two more at night. And as you know I am on the X for two weeks on and one week off. I think that is considered fairly standard dosage. So 2500 mg TWICE a day is really a huge dose! Sure he wasn't saying 2500 mgs per day? Even thats high. And its 7 days on ? Then how many off? I would think that by going with a lot higher dose the S/E's might be lot worse too??
Judie0 -
He's saying 2,500 twice a day...but it's just for a week and then you get a week off. Supposedly since you get SEs later, like maybe 10 days into treatment you don't get as many problems by doing it 7 days on and then 7 off.....this was his recommendation to begin with, but I got all this argument from my onco about how you were not getting the full dose by doing it this way. I don't know if I am doing it or not...he wants me to talk to the other onco, the one here whom I think is better about working with someone to see what his thoughts are. I was on the exact same dosage you are on now, Judie and according to him, that is a low dose......and I had no SEs so maybe that is why.
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Hi all!
Well, I get to join your Diva group. I just got DX yesterday at MD Anderson after a spinal biopsy. Yup...its the BIg C. In mostly the t9 and T 4 and some mets in other bones but small. This totally sucks as I am 34 and have a kindergartner plus a hubby. I have read the thread from beginning to end and am petrified of the side effects. I had neo chemo before my UMX with the big guns: Taxotere, Carbo, and Herceptin. I did okay till the 4 cycle then spiraled down like a domino. I felt like I could not function as a mother and had to have someone with me 24/7. I will also begin Tykerp since Herceptin poo pooed me.
Any advice is welcome. I mean ANY.
Maybe: I know we have the same onc and that silly office called me yesterday to cancel my appt for Thurs because he is out of town. Really? At what point did he realize he was going to be out of town to warranted a call 2 days before my treatment and follow up from MD. In addition, he was so adamant about the spinal biopsy paralyzingly me that he was "going to consult a very well regarded RAD guy in Cincy and get his opinion and then he would call me." Guess what? I got NO phone call. Of course, MD Interventional Rad team pulled it off.
About your records....I had to go down there and do it myself. Tom was supposed to get all my imaging and never came through. I just went to b north and did it all myself. DONE with them. I think Mr. C is getting to big for his britches. I firmly believe once he realized I could be Stage 4 and not his poster chemo happy patient he wiped his hands.
Upwards and onwards.....sorry for the rant.0 -
Day one Cycle 12.. yay and a sigh.
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Dear Tiger - Sorry that you had to make the change, but welcome to our DivaHouse! Gotta tell you hon, TDM1 failed for me in only 3 short months, but I have been on xeloda and tykerb since and am doing just loverly. Lots of ladies here who are doing the happy dance - best of luck and keep in touch. Sue
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Tiger_Blood, I am sending you a PM. I can understand your frustration, but think it is more the office than the oco. If I had not switched to him 14 yrs ago, I would not be here today. And considering I was already Stage lV when I went to him, he has done a very good job for me. The others on here can tell you much more about the SEs with Xeloda than I can since I did not really have any....but then again, it didn't work for me. The onco at MDA thinks the dosage I was on was a low one, but it's what JustJudie is on and it's worked for her so who knows. I sure do hope it works well for you.
So far as treatment, I honestly do not know what I am going to do, but know I have to do something since the numbers and size of the tumors are increasing each and every day.
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Hi All!
Marybe: I'm on 2,600 a day, but I'm on the 14/7 plan.
Sueper: Enjoy your trip to Montreal!!
Apple: Cycle #12! I was wondering the other day how many you have had. I was thinking we were closer in number, but you are double mine....I just started #6. How is this cycle treating you?
Tiger: Welcome Diva! Sorry you have to be here though. Please don't be petrified about the side effects. Most people do not get ALL of them, and for many the ones they do have are tolerable. It's an adjustment, but not one that is doable. If you start having really bad side effects, talk to your doctor right away. Do not wait and think they will get better on their own. This drug is very "dose senstive" and my onc told me it's kinda tricky to get just the right dose for each person -- a dose that will work on the cancer, but be tolerable to the patient. You may need a dose reduction....you may not. Hard to say till you start taking it. Also, generally the side effects do not happen immediately - it will take some time before they show up. I don't have any tips on the Tykerb since I have not takent that one. Best of luck to you and please feel free to chime in her often - lots of great support here! I was 34 when first diagnosed so I can empathasize with you on that - such a blow and hard to accept. Looks like yours is in the bone only.....please keep in mind you can live for many years with bone-only mets. I have had bone mets for 7 years!!!
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Apple, do you find it difficult to put that first dose in your mouth every cycle?
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Hi! I take two 500 mg in the morning and three in the evening, a total of 2500 a day. Seven days on and seven days off. I've had 14 cycles and the side effects have been minimal (tingling feet when taking walks, ugly feet, etc.) It seems to be doing the job for now.
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Marybe - Sorry you are having to wait so long in between all of this while they get it figured out. I am taking 4 - 500 mg tabs in the morning (2,000) and 3 - 500 mg tab in the evening (1500) for a total of 3,500, 7 days on and 7 days off. The main side effect I have is nausea and that is something I can live with, Zofran helps some but I figure I am lucky if that is all that is bothering me. So far my tumor markers have continued to rise but the onco said that was to be expected for the first month or two, I made the comment to him I did not have that much time to try this and then try something else, he reassured me I did have time so that made me feel a little better. I started the middle of September and think this is my 5th week and I will go back November 17 and hope the markers have gone down. My onco also said they have had better luck with the higher dose and 7 days on, 7 off because people seem to tolerate it better and not have to take so many days off as when they do the 14 because some have to stop early or take a smaller dose. I hope you can get some answers very, very soon.
Lynnl - Congratulations on your 6 year anniversary, and have fun on your trip. I have always wanted to go to Savannah, maybe someday I will get there. We just celebrated our 39th anniversary and hope to go to Alaska to celebrate our 40th next year. As far as your meltdown, we all have them sometime or other and are just glad you are back.
K-Lo - I find it difficult to even get the pills ready for the week in their pill container. I get nauseated just thinking of them and looking at them. Then I find myself looking everyday at how many days I have left, like it is going to change overnight
, and guess what, it never does. I only do 7 days on and 7 off so there really is no need to look at how many days I have left, sheesh, sometimes I wonder about myself.0
