All about Xeloda
Comments
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Rose: awww, gee thanks....glad you like it.
Kathy: Oh no! I'm so sorry you are having blisters!!! Have you called your onc yet? They are probably going to tell you to stop taking it for a little while to let that heal. Do you think the cleaning chemicals caused it or just "over use"??
Marybe: You used to cut them off with scissors? I'm cringing at the mere thought! You are one tough lady!
So here's my rant for today: Yesterday I called the Xeloda Assist line. It said they had RN's ready to help you with any questions, and I did get an RN on the phone. However, all she did was read to me stuff I could easily find on the Internet! When I asked for her opinion or some real-life type experience, she just kept reading. I finally just said "thank you" and hung up. I was already pretty annoyed about that, but then today I get a call and it's another lady from that line again. She says she wants to go over se's with me. I was like, WHAT? I assumed that really meant she was going to read to me again. So I politely told her no, didn't need any help, thank you. She wants to know if this is a bad time...she can call back later. I was like NOOOO. Do not call me back. I am just livid! What sort of help is this?! All is has helped me do is raise my blood pressure!!!!
Ok, rant over. Thanks for listening!! 0 -
Not blisters, just signs of blisters. Maybe can prevent
Ya the xeloda support people are afraid of saying anything that will get them in trouble with doctors.
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way to go Judi..
this seems like it is going to be a 'strong' cycle for me.. my onc. has already suggested the one week on, one week off dosage, depending on my upcoming scans.
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Kathy: I'd still call your onc. Mine told me to call him at the FIRST SIGN of any HFS. Once it appears, it will only get worse, not better. Don't let them get to be blisters before you call please.
Wonder why my onc is the only one seeming to hold steady on his 2 weeks on/1 week off plan. ?
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Okay, Lynn, ill call.
There's a study about the 7/7 regimen. Ill find the link.0 -
Lynn, He probably wants to stick with it because it is the old tried and true method and maybe he's just not as familiar with the 7 on, 7 off plan. I tried to tell my onco about the 7 day one quite awhile ago when the onco from MDA had suggested Xeloda and I knew someone on the boards that was doing it that way, but he just kept telling me, "that isn't getting the full dosage"....even though I had a printout from the regime from Slone Kettering or John Hopkins or one of those big names. Maybe if you showed yours some of the newer test results showing that it works, he would listen. Even if mine won't listen, the female PA does and I already told her I wanted to try the 7 day if I start getting bad SEs with the 14. Tomorrow is Day 9.....should I be seeing anything yet?....or does it take several cycles? It must not be messing with my warfarin yet.....yesterday my INR was 2.3 and that is the range they want it to be in.
Re my callouses....I am not so tough, but my feet are and all I am cutting off is hard old dead skin that really doesn't even have any feeling....believe me, if I would go too deep I would feel it. My feet feel much better after I take those hard areas off.
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http://www.prnewswire.com/news-releases/biweekly-xelodar-dosing-regimen-is-well-tolerated-in-advanced-breast-cancer-57758652.html
The Phase I study dose escalation scheme is a standard "3+3" design,
using flat dosing that begins at 1500 mg twice daily and increases by 500
mg/dose level until the MTD is reached. All patients in a cohort are
observed for two cycles before enrollment to the next level is permitted to
monitor for delayed toxicity.
The study showed that the 7-on/7-off dosing regimen is well tolerated
in patients with advanced breast cancer, allowing safe delivery of higher
daily doses than routinely used in practice. Seven (7) patients (of 21
recruited) had been treated with Xeloda and a maximum tolerated dose of
2000 mg twice daily was reached. There were no grade 4/5 toxicities and
grade 3 toxicities (which included one dose-limiting incident of hand-foot
syndrome at 2000 mg twice daily and two at 2000 mg/2500 mg, and one
dose-limiting incident of diarrhea at 2000 mg/2500 mg) were transient and
medically manageable.
About Xeloda
Xeloda is the only FDA-approved oral chemotherapy for both metastatic
breast cancer and adjuvant and metastatic colorectal cancer. Inactive in
pill form, Xeloda is enzymatically activated within the body; when it comes
into contact with a naturally occurring protein called thymidine
phosphorylase, or TP, Xeloda is transformed into 5-FU, a cytotoxic
(cell-killing) drug. Because many cancers have higher levels of TP than
does normal tissue, more 5-FU is delivered to the tumor than to other
tissue.0 -
apple - I hope this cycle isn't too harsh for you. I've definitely noticed the SEs coming and going.
Lynn - I took your suggestion and tried the Compazine I've had lying around since my AC - and it worked much better than the Zofran. Thank you for mentioning it!
k-lo - thanks for that study. I'll be sure to bring that to my MO, just in case.
Right now the nausea/fatigue/headaches are piling up a bit. I'm going to stick it out these last 3 days, though I hate to have to medicate myself for the SEs on top of everything else. Hope everyone else is having an easy time of it!
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Hey, Lynn, called oncology nurse to report early hand blisters and she said "Stop taking it . Don't take anymore this cycle". So, thank you!
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10th day and no SE's. Am I out of the woods yet?
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mine kicked in on the 2nd week.....am on my 3rd round and my feet are swollen and of course nauseous!!! No blisters or anything like tht!!
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I'm a little confused at stopping for pre-blisters. The creases are red, there are little red spots all over the palms and they sting. But I know blisters from Doxil ( tell me if you're sick of hearing that). So, it's weird to be off it while you guys are trucking along. I got to 6th day of second week. ( 7/7)
Blah blah blah.0 -
Blondiex46: have you tried Prilosec? I have been taking one a day before my first dose of Xeloda and I have hardly any nausea now.
Kathy: The reason my onc said that was because when you start seeing symptoms they will get worse before they get better. This was correct for me. When I saw him, my hands and feet were only slightly red and swollen, but 2 days later I could only wear bedroom shoes my feet were so sore. I think if you just keep taking it in spite of the se's, they just get worse and worse. You need the break to get it out of your system before you start again. If you made it almost to the 7th day of your 7/7 cycle, that's pretty good. Hopefully your 8 days off will allow you start again on schedule.
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Day 11 and no real SEs still....fingers feel a little bit like they have been burned on the ends,but it may be from yard work. I am noticing more neuropathy in my feet than I had when I started....toes and balls of feet sort of tingle and get little "pings" in them so am not sure if that is really neuropathy or HFS. And the good news no diarrhea. Every morning when I get up I take off the gloves (makes me sound like a boxer leaving the ring) and look for changes, but I honestly do not see any. Wed will be the 14th day so if I make it to there, then I get a week off.
KLo, I made a copy of that 7 day study and am taking it with me to my appt this week...got both my lst herceptin and xgeva last week so this appt with just be for checking my INR and bloodwork.
The bad thing knowing about what the SEs could be is that I am constantly looking for them.
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Marybe, once again you are the holy grail of survivors! Good job.
Lynnie, can I call you Lynnie, You're right I went pretty far. When you think about it, you're taking daily chemo! 5FU twice a day! Gotta be doing something. Xoxo0 -
K_Lo, I might be surviving, but the big question Is it working? It worries me when I don't have the SEs everyone else gets. My onco says there is no correlation between SEs and the success of the drug....but he has also told me that the tumor markers are not an accurate tool in being able to tell if a treatment is working....I myself, even though I am not a doctor think he is wrong. My tumor markers were 3,306 when we last checked them and have done nothing but go up since July 2009. The treatments I have been on since then, two anti-hormonal, three chemos, all failed and I really had no SEs other than diarrhea with the one and constipation with all the others. I am sure if I get HFS I will bitch about it, but I might also feel a little more confident that the Xeloda is working for me.
Do any of you watch the Big C on Showtime with Laura Linney? She was so happy last week when one of her finger nails fell off.....up until that time she had no SEs and was worried that the trial she's in was not working. I can relate to that.
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Wow, that's appropos to your feelings, Marybe. My onc said the same. Second phase of Abraxane I was feeling too good. But it was holding 90%.
So, I just coined a new term of us: we Home Chemo. It's a philosophy, you know, we feel Home Chemo is best for our little bodies. We feel that Public Chemo is too crowded and not individualized enough. (noses in air).
Get it?0 -
lol....my feet are swollen today so am in bed on the puter... thank Lynn will try the prilosec this quality of life crap is really getting on my nerves....
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Today I go n and show my hands to doc's nurse. They look speckled with pink-red. I'll let you know what she says. Also see if my INR is high enough. Ready to switch off lovenox! Any advice on buying INR machine? Thx.
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Kathy: LOl...yes, you can call me Lynnie if you want. My ex-FIL used to call my Lynard. LOL!
And, yes you are correct. That is what my onc said....that essentially this is like being on an IV pump for 2 weeks straight....we are getting "continuous" chemo and that is what makes it so effective.
Home Chemo.....why yes, dahling, we simply can't be bothered with those silly chemo infusion rooms anymore. LOL!!! Oh my!
Yes, let us know what the nurse says about your hands!
Marybe: I know what you mean, but my onc said the same thing...that se's are not an indication of it's working or not. I hope you are just one of the lucky ones who has great success without all the nasty se's!!
Blondie: Hope your feet are feeling better today!
As for me, I'm almost at the end of this cycle...today and tomorrow and I'm off for a week. Wahoo!! I can't wait for my break. Things are going ok -- just a little redness and peeling. Mostly what is becoming annoying is the tingling, but hopefully that will go away on my week off. For my calluses, I bought a pumice bar from my nail salon and I'm using it at home. This way I can control the pressure, etc. and stop if it starts to hurt or anything without having to startle some poor pedicure lady. Haha! I'm using it a little each day and so far it's not making things worse. The calluses are still there of course - only been 2 days - but hopefully in time I can get rid of them.
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I've noticed that my fingers are so slippery.. losing the little ridges (if only temporarily) that make fingerprints make my fingers feel like well - oiled glass. I can hardly pick anything up (but can still play the organ/piano).
I also noticed that i left the house without remembering to take off my crocs and socks, and put on my tennis shoes..
I felt like such a nerd. I'll have to get some granny glasses to wear to match.
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More like "sting-ling" right?
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Apple: Me too! Mine sorta comes and goes, but at times my fingers look like fat little sausages! And, yes, that makes them slick too. Weird se's with this one!
Eh, don't worry about it.....people wear some really strange stuff these days. I'm sure your Crocs and socks are very tame compared to most!
Kathy: Mine don't really sting. I still call it tingling....feels sorta like when your hand falls asleep and it's just waking back up - that weird numb but feeling-coming-back-in sensation.
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Day 13 and I think everything is still fine. Neuropathy seems to have increased in my feet...balls of my feet don't hurt, but are a little uncomfortable to walk on like they feel when my callouses are too thick...(time to get the scissors out again....no, I am actually going to go see the podiatrist again and no lie, he will used the dremel on them) . Today I see the PA so will see what she thinks....I am going to ask if it's too soon to do the tumor markers. I sure would like to see those numbers start coming down.
I looked up and was reading Xeloda SEs to see if vision could possibly be on there and it is a very rare SE...like maybe 5-6%, but yesterday I noticed my distance vision is worse again, especially the left eye and it was perfect after cataract surgery which was just this Spring so something is going on. Imagine my shock to see hair loss on the list....has anyone had this?
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Marybe: Woo Hoo for you then! I am so happy you've made it through your 1st cycle with hardly any se's. I hope this one will continue to be gentle with you.
Good luck today at the podiatrist. I hope they can help your feet feel better.
You know, I have been having some slight vision changes and I just assumed it was just old age creeping up on me, but maybe it is the Xeloda instead. Hmmmm.....
I saw hair loss on the list too and was a bit shocked since my onc said "no hair loss with this one". I don't beleive I've seen anyone on this board with hair loss from Xeloda, but I could be wrong. So far, mine has not changed at all.....I haven't even noticed any thinning. Of course, as thick as my hair grew back in this last time, a little bit of thinning would almost be welcome. LOL!
So I have a new thing going on and wanted to see if anyone else has this.......I have small brown "dots" on my hands and feet. They look like a very small bruise. They are almost perfectly round. They don't hurt like a bruise though. I asked my onc and he said without seeing them, he would assume they are from the HFS. Anyone else have this??
Also, my onc finally called me back now that he's back from vacation -- actually he called me this morning before 7:30 am. I was like, WHO is calling so early?! Scared me for a second, ya know. Anyway, I told him about his NP and how he was no help while he was on vacation. He said he would talk with him and tell him how he should have handled it. (He should have gone to the doctor that was covering for him and get him to answer the question.) He said to just stay on whatever dose I'm taking for now -- since today is my last day of this cycle -- and we'd talk more about dose when I see him next week.
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Lynn, thank you for telling your onc about the NP. These people go renegade and mislead. as a former nurse, i can tell you, some of the men have a doctor complex - they cannot stand being just a nurse.
Good morning, Big D! At least I know how to treat diarrhea. Tea, toast. *** buy bananas, applesauce. I need a personal shopper. k
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Go Xeloda divas! I've been off for 3 wks, and my palms are still peeling. I didn't have callouses, because my HFS was sooo bad the skin peeled off and my feet are now smooth as a baby's butt (cloud9) Oh the perks of wacky chemo.
I do think the Xeloda causes / worsens depression, I've been on Effexor since mets dx and have noticed myself being extra grumpy and short, partly from fatigue but partly just because everyone seems so stupid LOL. Prilosec did help with the slight nausea / stomach discomfort / GERD I got on Xeloda too.
Since it didn't even work for me, I'm pretty sure I won't be back on it. On to either my clinical trial of Taxoterrible (sigh).
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Gosh MJL, I hope you get something that lasts awhile. I'll always treasure my good 6 months on Abaraxane (4 were kinda bad, then 6 perfect). Sigh. The good old days.
It's just nice to stay with SOMETHING for awhile. Maybe this Taxo will be YOUR friend.0 -
MJL - I am so sorry that Xeloda didn't work out for you, even as rough as it was. That sucks. I really hope the Taxotere treats you more gently.
Lynn - I'm glad your doctor is okay with your reduced dose for now! And good for you for telling him about his PA. Hopefully it will lead to some improvement in her behavior.
K-Lo - ugh on the big D. I've had a few bouts, but nothing major yet. I hope the BRAT diet does the trick for you.
My off-week! Yay! Still feeling a smidge of nausea, but I'm going to try the Prilosec for the next round to see if that works. No hand/foot stuff, but I definitely saw an uptick in depression
. I'm starting back into an exercise routine next week, so I want to see if that helps. If not, I'll have to get on some type of anti-depressent, which I'm not opposed to, I just have no idea what to try. Trial and error I guess.0 -
Lynn,
My onc told me when putting me on this cycle that it was new protocol. She said it seems patients do better with tolerating s/e. The dose goes by your body weight, so don't worry about not getting the full dose.
I will tell you that this past Saturday was 2 days out from my last day of my Xeloda cycle. I was in so much pain, I was hysterical telling my hubby he was the best thing that ever happened to me, this isn't fair, what did I do to get Breast CA. I cried how it took our life away, my beauty and me not being able to be here for my children.
Um.... I feel fantastic today... UGH!!!!!! (Pain is a s/e of Xeloda)
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