Im bitchy, I moan, I groan.....anyway.
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sorry to be a pest. i just talked to a nurse at roche pharma. she is going to have someone from product safety call me but who knows when. she advised me not to start taking tykerb today since my se's are increasing from xeloda. i asked re lower dosage and/or one week off, one week on. she said they can't advise that since it's not fda approved. i called onc office back because of bloody nose and am expecting a call from doc after she's done with patients. i just don't know what to say if she says if i can't tolerate 4000mg then we can go to something else. i think i'll tell her i want to try lower dosage and see if that helps se's.
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It is your body and sometimes you just have to make choices. Here is the link for the roche program for help with s/e from xeloda http://www.xeloda.com/pdf/xtra-support-form.pdf You need to call and let the onc nurse know how bad the s/e are and that waiting til this evening is not an option. The interrupt doctors all the time if they feel it's necessary. remeber the squeaky wheel gets the grease.0
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Traci - the confused part is not so good, but here's to feeling better about yourself - I'll take that any day! (and I'm now singing, "the itsy bitsy spider went up the water spout...")
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Oohhhhhhhhhh! Traci, sounds intriquing~ To be a fly on the wall!
Anytime someone can help make us feel better about ourselves warrants high marks and the confusion part? Hm...isn't that a given in this situation? It would be for me, I'm sure! Glad you enjoyed your weekend! AND YES! ROCKS nosy B*TCH SUX!
makes it hard on us all for certain!0 -
lol!!!!! And now we are all gonna be singing ..... the itsy bitsy spider went up the water spout...down came the rain and washed the spider out....I forgot the rest...
Maria, LuAnn is right about the squeaky wheel.....sorry girl........
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Oh geepers, I can't either and I had a childcare and sang it every time it rained for 14 years!! OH MY! BIG Old brain fart....Up came the sun...and dried up all the raindrops....itsy bitsy spider climbe up the spout again! YEAH!!!!!!!!!! I think thats it! I had to sign the dang thing, and I still don't know if it's right!
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gee I sing that song on a daily basis with my grandson along with the rainbow song, that is a new one for me but cute
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P.S. we sing the spider song on purpose because his mommy is petrified of spiders LOL
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Dh is of snakes and had a fit the other day when I caught one and snuck up behind him with it at head level! WHat fun men can be!0
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"The isty bitsy spider went up the water spout
Down came the rain and washed the spider out
Out came the sun and dried up all the rain
And the itsy bitsy spider went up the spout again"
I'm feeling a bit paranoid lately, too. Doesn't help that I dreamed about h2b's ex last night (did I ever tell y'all how she tried to "team up" with my ex during my custody battle nine years ago?) then saw her lying sack of sh*t sister today, I guess. So, if they are poking their fat noses here where they really shouldn't, I want them to know that I think they suck to the nth degree and should seriously consider counseling! (ok - rant over...)
Maria, LuAnn is right. Keep on squeeking, girl! Call your doc as soon as you can...
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well onc called before. i'm not entirely happy with her. according to her none of my se's are due to the xeloda. well some of them are listed as se's. after i told her i talked to a nurse at roche where it's made, then she said i could stop the xeloda till i see her and have my blood test. and to take the tykerb tonite. well i decided i'm not taking tykerb tonite...i'll start tomorrow. she said bloody nose was due to baby asa which she told me i could continue to take. well i've been on for5 years and never had a bloody nose before. then she said you know you have alot of disease in your abdomen. well s..t i know that. i thought that it was good that it was contained in the nodes and not in any organs so far. sometimes i wish she could say something more upbeat. maybe i just don't grasp it. hell i don't have a college degree but i did work in medicine for almost 20 years in diagnostics. sometimes i feel that she is condescending to me and doesn't let me get a word in and repeats stuff like i didn't understand the first time. luann thanks for the link...i'm going to follow thru and tomorrow going to call the amer cancer soc. to ask about research re lower dosage and week on/week off. and i'm anxious to talk to the product safety people at roche. i've always had odd se's to meds and extreme se's to meds which i've always assumed was because of my autoimmune disease. thing is i think she's a good onc and thought she was right on top of things but now i'm thinking she's very rigid. but what to do...i don't live near a major cancer center and have to drive myself ...besides i've already switched onc once already. i just think it's odd that all these se's that have nothing to do with xeloda came on in the one lousy week i've been on it. thanks for your support. hugs maria
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Hope you get some relief from the roche people Maria! Sounds disheartening to hear an onco that kind of blows off your concerns and doens't listen to her patients and their thoughts. Wonder why that is?
Hope you start doing better in the morning so you get those calls in and get some answers dear lady!0 -
Ladies! LuAnn and I would like to get some imput on the hat/scard/wig thing tonight if possible! IF you are around at 8:45 and can offer input or be involved, we think it's important for everyone to have input and help in ideas to get this going! I hope LuAnn knows how to start a chat on here! LUANN? B/c i'm not even sure how to find it! Right after dinner I'll check it out.
That's 8:45pm eastern, if that works for everyone? Are you westerners behind us by 2 or 3 hours? Maybe we need to do it an hour later? Let us know what's good for everyone!
Hope to see you there!
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Wish,
Glad your insurance issue has been resolved, if only temporarily. That boss needs us to show up at his doorstep with our shovels... let me know if you need my help. I'll be glad to hit that A**hole over the head with my shovel!!
I am so sorry to hear that Deb C is having problems with her vision again. It SUCKS! I am praying that she is doing better soon!
I had lunch with Shirley today, and it was so much fun! She is such a nice person!
Oh, and the gyn onc was ok... he said that he will do a D & C every six months, whether I need it or not!, but I think he was kidding, since I told him that I DID NOT want to EVER do that again! I have decided that IF these things grow back, I will insist that I get a hysterectomy! I have had enough of this crap!!
However, it is the same story... the FSH/LH test came out showing that I am post menopausal, so I should be able to switch to an AI, if my regular onc will agree. So now, I guess I have to call him to see if he'll write a Rx for it. I am going to run out of Tamoxifen in mid Nov., but I won't see the onc til mid December! Are they ALL this stupid?
Well, I am just SO TIRED! Maybe I'll go to bed now, and it's only 8:00!!!
Everyone who I didn't mention, sorry, I haven't had a chance to catch up on all the posts... that is the story of my life lately... I just want to say that IT SUCKS!!!
Harley
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STay for our chat Harley!
And I hear you on the onco! Mine called into to give me a 12 month arimidex script but never told me! Nice hey? NO call, no Nothing! IDIOT~ And I told them I did NOT want to stay with him! UGH! GUEss i need to transfer the records and be done with them, b/c I'm not seeing him in nov for a 6 month visit!
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GRRRRRRRRRR....a HUGE "THAT SUCKS!" to all. My biggest IOS is that my computer has been refusing to load the message board pages here for a few days. I freaked out when I couldn't check on Luann and didn't want to call and disturb her if she was resting. I am SO GLAD that you FINALLY got fixed up; honestly--I can't understand why they treated you the way they did.
Bliss, you sure have a lot on your plate! You made me chuckle talking about going around in circles.
Wish: SOOOOOOO happy the insurance thing is straightened out (for now, anyway!) Your onc needs a visit from the shovel brigade
Felicia: your son deserves so much more than that sperm donor! Good thing he's got such a cool mom.
omg...I had to read so many pages that I missed that I can't remember everyone else's IOS! It's not that I don't care--you guys understand the "DUH FACTOR", right? (((HUGS))) and "THAT SUCKS!" to those I missed.
BTW, the wig/hat/scarf exchange is such a great idea! Who was it that suggested "Flip Your Wig"? I think that is a great name! DH helped me reorganize my sewing room so I can get started on the scarves I told you all about. With any luck, I'll work through my fabric stash and end up with oodles of scarves for the exchange!
((((HUGS)))) y'all!
Diane
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Diane, you can call anytime!!! I talked to a heck of alot of people the day of surgery and don't remember a one of them!!!! LOL I guess I had some really good drugs, as for resting in the daytime...in my house BOY IS THAT A JOKE!!!! Please call anytime I love distractions!
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WhaSux??
welll....like Diane-I read all the posts since my last visit & can NOT remember squat! DD needs puter for homework so I can't stay & address everyone! That's my story & I'm sticking to it!!!!!
I DO remember Cisco the SECOND cutest puppy in the world!! lol TY bliss & hugs for all your sucky stuff.
I Do remember Maria's IOS's--like you I have se's that only .01% have! AND I get my own se's!!! SUX!! My IOS for today is that I start xeloda tomorrow!! I didn't like the idea. Then we read all the literature that comes with it & I was DISliking the idea. THEN I read all your sucky se's & now I am downright scared of this $__t......but I gotta try it!-----ONE good thing--I have such a wonderful onc---we talked at length & he told me Sloane-Ketterling is giving xeloda one week on one week off & ithat is proving to be better tolerated than 2 on 1 off-so he Rx'd mine one on one off! He also agreed not to put me back on the avastin for now... HUGE HUGS Maria----we have choices hon!! Lowering the dose is definitely one-- I have heard that here MANY times......you also have lots of other choices if this one doesn't work for you! I for one would prefer a shorter better quality life than a long lousey one--after spending a winter getting transfusions every other week I CHOOSE NOT to do that again----at least for now-------so-guess it sux to be me!
HUGS to everyone-----someone please pm me about the ghouls who are reading this thread! I'd like to understand what is going on, but then, anyone CAN read what we post--so it goes!
Be well & stay strong
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Just little people in some of our sisters lives that have no life of their own and have to live vicariously through cancer victims it sounds like! It's so sad, that instead of living life, they choose ot read about people they don't know and who don't wish to ever know them, you know?
Hope your feeling better about your tx choices come morning dear saint. Praying for you all.
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saint, maybe we were separated at birth lol. i was so thankful not to take those 4 pills tonight. what dose are you starting on. my onc i think is good but she's just such a dam stickler for doing things exactly the way it's approved by fda. screw the fda. i passed the one on/one off by her and she rejected it. i don't think she cares what sk does. i'm just pissed that docs tell us that those se's are not from the med. duh, they are...oh they just appeared out of the ozone layer by coincidence? i'm very anxious to hear how you do...please pm me any time. i'll be thinking about you tomorrow. hugs maria
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maria, have you looked up the clinical trials on xeloda? Maybe taking the hard fast proof to your onc that these lines of thought are working with success will get her on the bandwagon. Some onc are good just not the ones to jump out there and try something different because of malpractice lawsuits. It is a shame our country has fallen to fear of being sued but that is reality. I know of one lady on a trial for xeloda and think she is at 2500 mg. I will be happy to give you her contact info off list if you want it. I am pretty sure she is on the standard 2 week on 1 week off but I have been constantly reading of the good results with one week on one week off. I know what my onc will be hearing from me the day he mentions that drug to me! Anyway, hope you feel better not taking any meds tonight
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Maria, steam is coming out of my ears at how your onc is treating you. Why do some doctors have problems understanding we can have a butt load of se's in a short amount of time - especially when they didn't occur until we took said medicine and are listed as possible se's?
My family physician is a bariactric speciaist, and the smartest doctor I know. He says, "You know your own body better than anyone else. When you know something is wrong - something is wrong. It is my job to find out what that is, or send you to other specialists until we do get an answer." When I get the runaround from some doctor, I call him and he reassures me I am NOT crazy.
Neither are you. Trust your instincts and try to get the information elsewhere (from a teaching hospital perhaps) where it would be hard for her to look at that evidence and not agree to try lighter dose, etc. This shouldn't be your job, especially when you are feeling so bad - but we are our own best advocates. I know you don't want to keep changing oncs, but it sure is difficult when you have one so stubborn.
Here's hoping you get some relief and answers. Because that REALLY REALLY SUCKS!
~Bliss
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actually i do feel better not taking them. onc said today that it doesn't stay in system too long that's why the bid dosing. my question is....is the 2500mg dosage as effective in treating mets as the 4000. after all as she reminded me, i have a lot of disease in my abdomen. i'm going to call the cancer society tomorrow cause they will do research .... i've used that before. i would like the contact info if you think she would not mind.
ps. it's good to have you back.
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Jerseymaria,
Side effects suck!
There is an in-house study at Johns Hopkins going on trying to determine if a lower, standardized dose of XELODA is effective. I know that there is a woman doctor doing a study on the dose thing but can't remember her name. The onc who saw me when my regular onc was out told me about it. He said that he expects the standardized 2500mg dose to become commonplace soon. I wonder if Ms. Shockney over on the Johns Hopkins "ask the expert" board would be able to tell you anything about their in-house study?
I had a horrible time my first week on XELODA. I was started at 5,000mg/day which was right for my size (the dosage is currently calculated by Body Surface Area like the IV chemos are) but was too much for me to tolerate. My onc had me stop the XELODA and wait until the next cycle and take a lower dose. I don't think that, with drugs like XELODA, "more is better" is true. The prescribing information for XELODA (there is a .pdf file at www.xeloda.com) lists a number of side effects and classifies them by severity--grade 1, 2, & 3. There is a chart in the prescribing info that describes what actions should be taken with the various side effects and what dose reductions are recommended. There is also a free program at ROCHE where you enroll and are assigned a nurse who you can call with questions. I was given loads of information in a blue zippered bag with "XELODA" stamped on the front--there were even sample of Udderly Smooth Cream and vitamin B-6! I bet you could request one from ROCHE. There was even a litle calendar/booklet where you can write down your side effects on a day-to-day basis to share with your doctor.
Diane
(((HUGS)))
EDITED TO ADD: There is also a blood test they can do to make sure your body is metabolizing XELODA properly. A small percentage of people lack the necessary liver enzymes needed to metabolize XELODA.
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Maria - Good docs also listen to their patients. It doesn't matter if she is top in her field intellectually, if she's a basket-case with real people, they won't trust her and that's absolutely necessary in good medicine. Keep squeaking!!!
Diane - I remember when you first started Xeloda (at least I think I do) - wasn't it all the cause of all that puking? Sounds like it got better. BTW, did you start your other stuff yet?
Wish - I'm so glad to hear your insurance stuff is better, at least for now. Remind him we have shovels that we're not afraid to use.
I don't really have any IOS today, except that I should not stay up late as I have to work in the morning. Had today off and it was lovely!! Throwing out a THAT SUCKS for all!
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Good Morning Everyone - and marking my spot lol. Worked almost 11 hours yesterday and when I got home I was so tired. Anyways a big that sucks to everyone that needs one today.
I am darn tired of doctors not listening to our side effects. If its not in the books then it shouldnt be happening. Well really - who determines what side effects are?
Anyways - need to hit the showers. Hope everyones day is absent of IOS's.
Nicki
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Hope everyone's day is better today than yesterday ladies! I'll be checking in time to time, but will be keeping an eye on the contractors doing our drives today. What a freaking mess! Wish me luck, they don't bury me in a cement hole! Came close yesterday to that I think....Oh well.....it's MY drive and I'm going to practice on him being 'assertive' so when/if I see my onco again, I can know how to be just that!
BIG THAT SUCKS to yesterdays woes and a BIG old {{HUG}} to start your days with sunshine and laughter dear friends!
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My IOS today is that yesterday was I had an AWFUL day work-wise yesterday, and I was exhasuted from not sleeping, AGAIN, the night before, and I missed the flip your wig chat. I found a bag of "cancer stuff" yesterday that I have been afraid to throw out (tempting fate and all that) but basically just ignoring as it sits there on my bedroom floor along with a storage bin of old pictures and frames that I'm going to "do something with" (anybody want any picture frames? :-)
A big that sucks to all, I am swamped at work, so gotta boogie. Read all the posts, but I'm a little stressed, so I can't link names to specifics right now (I'm guessing you guys can relate to that!)
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So sorry you're swamped and having trouble sleeping to boot!
You didn't miss the chat.
That didn't go so well, Probably b/c we didn't give others enough time to join us. We do plan on another Thursday evening at 9:00 pm Eastern time! Hope other can make it! Please, we really would like everyones input on this. From start to finish, it's a group project, so we need the group 
LuAnn will collect hats/scarves, and wigs, and I'll do the pms from anyone so she's not overwhelmed. If anyone has questions, bring them to the chat on thursday night, k?
Hope your day goes better CMB!
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WhaSux????
--Just bopped in b4 I go volunteer at the humane society---after reading about the xeloda se's in the first week I'm now reconsidering leaving home today!!! LOLOL I AM gonna go tho--cuz I'm that kinda child of the 70's.....wish me luck & keep me in your prayers as I do all of you!
Is the chat in the chat room? Could I suggest we meet in the second room? I have suggestions & I would love to help in any way......meet ya there-be there or be square! (who said that?)
I am not focusing well right now--too many distractions swimming around in my head, but whoever asked: I am on 3500 mg xeloda--my onc thought we should start at the higher dose & see how it goes....& so it goes!
Big hugs & a big THAT SUX for all who need it-be well & stay strong
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