All about Xeloda
Comments
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Hello everyone, I am on vacation still, but am at a Subway where I can get on the internet. I am now with ChrissyB and will be taking her to the airport in Branson tomorrow. The other women who were here have all headed back to thier homes.....MissKitty, Badger, AmyJo and Elimar......we had a really nice time together and it is always nice to meet the people in person.
After the lst week I needed to refill my pill carrier and I either lost some pills or Kroger shortchanged me on my Xeloda so I called the pharmacy at home and they trasferred my RX to a pharmacy in Springfield MO and my cousin is bringing it to me today since I don't even know if there is a drugstore in this tiny little place of Shell Knob. It's way down in the Ozarks but a beautiful and relaxing place to be. I am noticing more cracks in my fingers and they feel rough in spite of using the bagbalm and gloves and I think it is because I have been washing a lot of dishes....the house has a dishwasher but there were a few things that needed scrubbing and of course I did not wear rubber gloves.
When I get back home I have my herceptin appt scheduled for Tues AM and we are going to do tumor markers.......I am both looking forward to it and dreading it, but I really want to find out if the Xeloda is working for me.
I don't have time to comment on every post since we dont want to spend the afternoon in Subway,, plus the AC in here is really going full blast, but Hello Clemson.....know you from the halaven thread. How high are your markers? Glad you are not having SEs, Blondie. I will check in with you all later. Marybe
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having fun I hope Marybe....
Went to the drs. yesterday, he told me to stay off for 3 more weeks, then getting scanned and back on it, as a different dosage.....
Still having the SE's so sick of it, lol!!
Have a good day!!!
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Hi, everyone. I haven't started Xeloda yet as my nurse said it takes a while to get the drugs. I am guessing they are mailed to me but will ask at my next appointment. Marybe, I have been keeping up with you and hope you get wonderful news on your markers. Mine are at 1300 right now. They had gone down to 200 but rose to this lovely number during 3 cycles of Gemzar/Carbo. These darn markers are a blessing and a curse. It is obviously good to have something to help gauge the cancer activity but it sucks to live in fear every 3 weeks. I hope all that are having great results with Xeloda continue and those that have changed treatment find that magic cocktail.
Susan0 -
Blondie -
Im sad to hear that you are still having SEs. What SEs are you having now? Is there anything they can do to ease them for you? I truly hope that your body will heal and you will start to feel better soon.
Good to hear from you Marbey! Hope you enjoy the rest of your trip and catch us up when you are settled at home.
Clemson: Welcome to the wonderful world of being a Xeloda Diva. I have been on X for almost three weeks now. Took the pills for 14 days and now 4 days off. Doing pretty well so far. Staring a new chemo is like going on a really long blind date. I mean really long. You dont know how its going for weeks. Im not ready to jump ship yet myself. Hope its great for you too!
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Hi and thanks for asking, my hands and feet are still peeling and my eyes are still watering... the nausea is always!!!
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Hi all. Sorry for all the SEs, but glad for good news! Had my surgery 9/21, the thoracic guy said everything looked clean and healthy and called radiologist into room to help say exactly where met was inside healthy-looking sternum. Removed about 3" of sternum, in the center-ish (attachments at top and bottom unaffected)....plastics guy was there from the beginning protecting "his" blood supplies to bilat DIEP flaps. Plastics guy filled defect with part of pectoralis muscle from right side. Said I might have a bump but we could do some lipo down the road if so. I could care less about a bump or even losing the flaps at this point because the cancer is GONE and I have one onco saying it was definitely a met and I have to accept it....and another onco saying it could have gotten there through the lymphatics and been there since the beginning,,,AND a thoracic onco and a plastics guy saying they "think they might have cured me". To do the X or not? To stay with the onco I have now and have had for 3 years and felt comfortable with...or to switch to the other one who is 60 miles away...I already officially have the diagnosis with the PET scan saying "isolated metastasis to sternum"...so does that mean I am officially stage IV or not or does it even mean anything other than when I will try to renew my life insurance in 2014? Am I even allowed to be (or should I be) posting in this forum? I felt better physically than I have in MONTHS literally as soon as I woke up after surgery--it was just like the first time when I had the left mastectomy, I realized in retrospect how sick I felt before the cancer was removed. My appetite is back, I have energy, I was walking the hospital halls the next day because I know that is what gets me well, I walked two miles with a friend yesterday, one week post-surgery and all I feel is a big sore spot. I do still have a drain but having woken up from surgery before with FOUR, one is a breeze. I kind of feel like I have a choice here to accept the stage IV diagnosis or not. And I choose not, because I don't think I can do it! I think I have to believe that we are back to square one and surgery=cancer gone. So, I willl have a decision to make about the Xeloda. AND rads are still on the table depending on the margins..........WHY is it that the people WITHOUT the expensive medical educations (us) are the ones who have to make these decisions? I am sorry this post was all about me and I really am thanking G-d for modern medicine and good health insurance....but I hope all you Divas have a great day and all your SE's magically disappear and I wish I could do more. Much love.
Sue
P.S. Edited for typos....sorry
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Hello, Divas, wanted to check in on yall. SO HAPPY it went well, Sueper. Very brave you are.
Hey, Zoh, you are keeping chipper, proud of you.
Jeanne, Apple, Blondie, Lynnie, everyone, hang in there I think this is a good chemo.
I do have weird imbalance once in a while: has anyone researched that?
Doing extremely well here, shhh dont tell the chemo gods, theyll visit to remind me of reality.
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K-Lo, I had to stop the Xeloda. I went to the doctor and we thought it was cellulitis on Monday but by Thursday it was not better so I was sent to my oncologist to get his take on it. I only had one week on, then the week off and had started again Monday but when I saw him on Thursday he said it was "erythema nodosum"
, what the heck is that, so I looked it up on the internet when I got home, it is hard to explain but anyway, long story short he said it is a reaction to X and 3 out of 1,000 get it so I had to stop taking it. He said to come see him in 3 weeks and they will see if it is better and if it is they will probably switch me to something else, unless I talk them into trying this again. I have been having a terrible pain on my left side behind the implant when I move or anything so I am thinking that is also a side effect. When I was at the onco office on September 22 my markers had gone up, but then I had only taken a week of X, but kind of figured they would go up before they came down, I even asked if I couldn't just continue to take it and deal with the side effects but they did not think it was a good idea. I will keep you posted on what I end up doing. I am glad you are doing so well and I definitely WILL NOT tell the chemo gods
. I finally sent you another PM, so when you get a chance you can check that. 0 -
Hello Ladies,
I have been reading, trying to catch up. I am so sorry for those of you suffering with the bad side effects. It always amazes me how different each drug can be for different people. I have been very fortunate on Xeloda with no S/E's except the Big D and fatigue. but immodium does help the Big D so I have been very lucky.
However, a little over two weeks ago I broke my ankle and had to come off the Xeloda because my onc said it would interfere with the ankle healing. I can get back on Xeloda on this coming Monday. I guess he thinks this has been long enough to get the ankle going or something. The broken ankle is really a trial. Cant put ANY weight on it and just trying to do the simplest things is such a major production. Have to have help with almost everything and I HATE feeling like an invalid. I am trying to do everything they tell me so I can get back on my foot asap. The cancer was not enough, you know! lol....
Anyway, I kust stopped by to say helloto all the Xeloda Divas and to let you know I wish you all well on this chemo. My last scans showed no progression so it seems to be working. Have faith and Hang in.
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Judy Judy Judy! Good news! What do we all kmow about X and bones, joints? My joints feel loose. I can feel them clicking around sometimes. Balance off sometimes. Anyone know?
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Sue, If you are ER, PR+, wouldn't they try to keep the cancer at bay by putting you on some sort of an AI? The only reason I am asking this is because I saw that you were hormone + and that being the case the AIs can be used as preventative as well as treatment....they were used as treatment after I moved on to Stage lV and I had great results with them. If you are truly cancer free, I would not think you would be needing actual chemotherapy, but perhaps something as a preventative....like an AI or maybe avastin which is not actually a chemo....BUT I am not a doctor so I really don't know what they will recommend. I have always heard once Stage lV, always Stage lV, but it is possible to achieve NED...I didn't even know you could get to NED after being Stage lV, but was told on one of the threads you can....as for me, I have it in too many places and would be totally thrilled with stable or remission. I will be interested to hear how you do with this surgery since I do not know anyone who has treated their sternum mets this way. My original mets were to my sternum, but mine were extensive so that was not an option for me, plus they probably didn't do such a thing way back then, I have been very fortunate in that the only time I have ever had any discomfort was before they actually determined I had mets in my sternum and then again when it was in my sacrum, but rads got rid of the sacrum pain and after I started on tamoxifen and aredia the sternum pain went away.
I hope everything goes well for you. Marybe
PS Hey Judie....hope that the bones are healing fast. We missed you, but getting around in Eureka or even Shell Knob would have been difficult for you.
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Jeanieb: Sorry you are the 1/300 to get the bad reaction. Im glad they caught it anyhow. I hate when they have to chase thier tails forever to figure out whats what. Now you can start to mend and move on to a treatment that will work well with no SEs ( I hope!).
Judy, You poor hopping Diva you. I hope you are allowed to bear wieght on that puppy soon so you can get around without expending so much energy! Sounds like a real hassle for you.
K-Lo: Yes indeedy! Loss of Balance is one of the listed side effects for Xeloda. Are you having dizzyness also? Having any change in sensation in your feet will also screw with your balance a lot. Our sense of position or proprioception, uses the sensory input from our feet to let us know if we need to make a correction to stay in balance. If that part of the balance system is not working well, the other parts have to make up for it. (Like seeing that we are wobbling, or feeling it in some other part of the body like our back bone or inner ear canals). So I'm not sure what part of the balance system the Xeloda SE list is talking about. Could be this stuff or something in addition to this. But, your balance problems could be entirely due to X. I hope you are not at risk of falling. Falling S**ks and it is just too damn risky for we bonemetsters.
Now, about me
Im just done with day one of my second cycle. No HFS as of yet. I have puked a couple of times so Im staying on the nausea med 2x/day to avoid that. My fatigue did let up some during my week off and Im on a new schedule with reduced (YIPEE) pain meds that is keeping me a bit more awake. So, over all Im growing hair and very satisfied with X. Indeed, my liver pains and bone pain seem to be easing back so maybe this stuff is doing a good job! I guess we will scan after a couple more cycles. Im not sure.
But all is well over this way.
Zoh
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Marybe, I took Tamoxifen for two years, then switched to Femara (AI). Then at onc appt in July, estradiol levels had risen so went BACK on Tamoxifen. The spot on my sternum was there from the very beginning--I dropped a canoe on it once and since the size or character didn't change on scans it was attributed to scar tissue. At onc appt in July I asked for scans because I was tired. BLAM spot on sternum (after year off Tamox and on Femara) had quadrupled in size---but nothing else anywhere. I am really hoping a chemo is not necessary or recommended. The thoracic surgeons office is doing the molecular analysis thing of the tumor that was removed, and hopefully that will give us a lot more info about if more treatment would be beneficial and/or what type it should be. Lots of options, Zometa infusions, Xeloda, rads--just not enough info yet. How long ago did they find your sternum mets? I still feel like a fake if I write stage IV in my diagnosis...
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Sue....it was 1998 they found my mets, but I think it had been going on for a few years before it was discovered because the cancer was exactly where I had been having pain on and off. And that was when I changed oncologists.
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Hello Ladies,
I just finished my first round of Xeloda. I was a bit achey and sluggish this weekend, but what else is new. I did have a new "symptom" today... I blew my nose and started a pretty bad nose bleed. The splash on my white shite scared me so! I called my urgent care and they contacted my doctor who wasnt too concern.
The bleed didnt last long at all... just long enough to make me a ball of nerves. I never had a nosebleed... EVER.
Anyone else experience this? Of course all kind of bad things came to mind. I hate having to second guess EVERYTHING!
Thanks for listening...........
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Dana, Are you taking anything other than Xeloda? Like maybe Avastin? I have not had nose bleeds with Xeloda. Have you turned your heat on yet?....maybe its just having a dry nose and using a little vasoline would help.
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Hi Marybe,
My onc would never let me try Avastin. I had bleeding lung nodule issues.. so no avastin or naproxen and such. We did have our first cold weekend, so we turned on the heat. Maybe that caused it? I just never had a nose bleed... so you know how my mind went to the left.
Thanks for your response!
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LivingIt - I am also glad they were able to figure it out before it got any worse. It seemed to clear up right away so it makes me wonder if that is what it actually was since it got better so fast, I am not complaining , just thought it seemed odd. I was so hoping X would work because it is so easy to take, well, other than side effects, but better than going in to Omaha weekly for treatment. I will just have to wait and see what they say. I have been told by my onco that they have lots of different chemos they can try. Back in 1992 I did not have any side effects, well other than the normal, sick, tired, nauseated but that was to be expected, so I really thought I would just fly right through this one, well you know the saying, "you want to hear God laugh, tell him your plans", he is laughing right now
, because he has other plans I guess. I am a little anxious NOT to be doing something, I feel like I am wasting time, and heaven only knows, I don't have that much time. The onco does not seem to be in a hurry and I trust and like him very much so I will just let him do his job. I am sure they wanted it to get completely out of my system before they move on to something else to make sure the X really was the problem. I am so glad you are feeling somewhat better and it is exciting to be getting hair again. I hope all continues to go well and it works well for you.Marybe - I also thought you would always have the cancer once it metastasized. I kind of thought my onco told me I would always have it now but we could keep it from going further with meds. I was on Tamoxifen from 1993-1998. When it returned in 2009 I went on Femara and that worked for 2 years and it showed up in new places so switched to Aromasin but it did not work and that is why we were trying Xeloda. I have hopes that chemo will get rid of it but will be thrilled just to keep it right where it is and not getting any worse. I will have to do some checking to see if there is a chance of NED.
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WingsofHope My nose was bleeding and when I coughed little blood came up, that is when I called the dr. and told him to do something...so he took me off of it.
Did not know loss of balance was one of the SE's I wondered why that kepted happening...losing balance and almost falling over.
It has been 4 weeks since I have had the X and my hands and feet are still peeling and my eyes are still watering......getting scanned tomorrow and going to the drs. on the 18th....
LivingIt thanks for letting us know how you are and glad X is working for you.....fatique is one of the side effects I couldn't stand, the quality of life thing is really important to me....
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peeling hands.. better than last time.. balance issues.. yes sometimes, but i am pretty well grounded (low center of gravity).. wings of hope - I don't think i've ever had a nose bleed.. my son sure has them.
jeannieb2.. hope things work out soon for you and sorry you are so special. maybe you can try Faslodex... i liked that drug,,, very easy to tolerate.
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Hey fellow Xeloda divas!
I've been off of X for almost three weeks after the monster took over my right hand. I ended up with the equal to 3rd degree burns at the base of my fingers on the palm side and between the fingers to about the first knuckle. Having raw meat showing on my hand hurt like you can't imagine. My DH and I ended up at the ER on a Sunday afternoon and I was ready to be admitted (committed?) and call in Dr. House and his helpers.
For those of you who don't mind a little grossness I've tried to share a pic of what it looked like at the ER.
We had to get staph and yeast infections under control, but now it's doing much better, although not perfect. I saw my onc last Wednesday and we talked about a reduction. I've been on 2150 mg two times a day for more than a year, so we talked about reducing the dose. She's not comfortable with a week on/week off cycle, but said it was up to me if I wanted to drop the dose by 25%. This is the first drug in five chemos and three hormonals to work for more than six months and I've been NED since last May, so I hate to rock the boat. I'm going to stay at the relatively high dosage and see if I can get a few more cycles before hand/foot makes me drop the amount.
The onc wants me to wait until this Wednesday to start again -- assuming I think my hands are ready to go. We've added vitamin B6, D and E to try to combat the skin issues. Not sure how I'll decide whether or not I'm ready to jump in the deep end of the pool again, but I can stop in the doctor's office for a lookie see if I can't decide.
Keep those paws greased! Best wishes to all.
Nancy
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Dear Wings, I was plagued with little nosebleeds and my Doc didn't seem at all concerned - said he thought it was a minor effect of the xeloda, and then when he reduced my dose, the nosebleeds stopped. I bought some pretty handkerchiefs just in case. Hope it works out for you, hon. SUE
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Nancy, I did not see the pic because I am work and he doesn't want us to download anything here or open links, but just the description was enough to make me cringe. There is written evidence that the 7 day on/off cycle is just as effective as the 14 day.....the onco at MDA told me and also somewhere on the threads there is a link to the information from Slone Kettering. I am doing the 14 and so far so good (other than the fact we don't know if it is working or not), but if I started getting bad SEs I was going to say I wanted to try the 7 day.
Jeannie, There is some term they were using for those with mets other that NED....maybe it was NERD? No evidence recurrence detected....don't quote me, but I recall there was a big discussion on this and I had posted that I did not think you could be NED since I know with my bones, something is always going to show there even though it may not be active and they threw out this new term. As I said before I would be happy, Very happy to be stable again.
Dana, Be happy your onco didn't want you to do avastin....I hated it....for awhile my onco had every single patient on it.
this is my lst day back at work and this morning I was having such bad muscle spasms in my fingers that I was unable to floss this one woman....my fingers just kept popping out of place. Tonic water helps, but I don't have any here. Gee, I hope I can keep working for at least the rest of the year.
Sorry some of you are having such bad SEs.....but if it works, I guess it is worth it.
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Nancy - OUCH!!! That looks very, very painful. I hope it clears up very soon and that you do not have that problem again. My onco also said what Marybe said about the 14 day cycle. I asked if I should take the 14 instead of the 7 and they said they have better luck with the 7 on and 7 off because it seemed like patients would have to stop early or take a lower dose and by doing the higher dose with the 7 on and 7 off you were actually getting more benefit from it. I can see where it makes sense, though. I hope it gets much better and no other side effects for you.
Marybe - I see what you are saying now. I hope this works for you and keeps you stable with no new spots showing up. I hope the side effects do not get any worse for you either, it has to be tough when you work outside the home. I just have to wait and see if they will try me on X again or put me on something else. Time will tell I guess.
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Awesome, Zoh
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whoa those are far worse then mine....been 4 weeks since I have been on it, it must take a long time to get out of the system....I know that it is working cause tumor I could feel on my lung went down, but who knows what else.
I am so sorry it looks so painful!!!
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Nancy, this reminds me of my reaction to Doxil. It was like the worst paper cuts x 40 each hand. Now I have very very little reaction to X. Don't push yourself too hard, if it's wrong for you.
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Oh, yuck, I opened the picture. So sorry you had to go through that.....it hurts to look at it.
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Marybe - meant to tell you that your tonic water idea sounds good - you are a smartie. I am going to try it. Thanks - Sue
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Blondie, it's interesting to hear that you've been off X for a month. I'd hoped to start back tomorrow (after 3 weeks off) but, I'm just not sure if my hands are ready to go. They're soooo much better, but I still have little sore spots on the tips and in some of the creases.
I'm worried that those little cancer cell thugs are starting to congregate on the internal street corners of my body. I need princess Xeloda to come in and scare them all away. Maybe a few more days won't matter -- but who knows for sure? I'd love to do the 7/7 cycle, but my onc isn't comfortable even after I shared the Sloan Kettering information. Silly, she leaves it up to me as to whether or not I drop the dose, or delay my restart...but she won't agree to 7/7.
Good luck to everyone.
Nancy
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