All about Xeloda
Comments
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I continue to follow you ladies, me being a retired "Diva" and all, and I just wanted to wish everyone GREAT scan results. Your humor and honesty will inspire future divas! And it certainly has lots of great info. in case I have to come out of retirement.
I've been off Xeloda for a year in October, and it was a key element in hooking me up with NED. I have a Sept. 20 CT scan coming up, so I'm holding my breath with the rest of you... Sending love and wishing you all the very best...And don't touch our feet!!!!
xoxo
Rose.
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Jeanie, you were NED for 18 years? What a shock this must have been. I had Cmf 14 years agao, Abraxane last year and Doxil, evil Doxil, this year. If my scan shows progression, I'm gonna refuse to stop xeloda! I'll say, increase it! Knock on wood, I'm really good with it. Diarrhea is easily controlled, as they say, you can over-control it. I feel queasy sometimes, take the zofran. Tired, take a nap. Hands and feet not too bad. Crossing fingers that it works for you with good quality of life. Talk to y'all lovelies tomorrow. Kathy
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Alright, I've caught up with the thread. Great info here! I have been on Xeloda since the end of March, this year. I just started my week on (7/7 @ 3000 mg). The past two cycles have been tougher, with fatigue and nausea. Was anyone given a zofran prescription with xeloda? My doc hasn't given me anything yet, my SIL had some zofran left over from a UTI and they helped a lot. Also, anyone having trouble with insomnia? I go to bed at 1AM, wake up at 2 am, wide awake, manage to doze off usually around 4am then back up at 6am. I usually need 7 hours, I am tired but can't seem to stay asleep, and that is even with over the counter sleep aid.
I had a pet/ct in July. Funny thing was I felt like my abdominal tumors were getting worse, I had pressure and weird pains. Turns out the mighty Xeloda is working and my doc was very impressed with the improvement. However, he never told me way back in March exactly how extensive my tumors were, I apparently had them partially blocking both kidneys, in my liver, on my ovaries, and I'm guessing around my intestines because the doc said he was worried in the beginning that I was going to have bowel obstructions. I guess its a good thing he never told me how bad it was, wouldn't have done any good to know, lol.
Heres to being X divas!0 -
Isn't zofran for nausea?.....why would they give it to you for a UTI?.....to combat nausea from the antibiotics maybe? Anyway, I have a bottle of something for nausea that my onco told me to be sure to fill when I started on the xeloda....think I had one for halaven also, but I have not had to take anything for nausea with any of my treatments. They do give me something in the premeds before I get my treatments, aloxi I think it is, but now that I think of it, I don't even get any premeds with Xeloda. I am doing the 14 day regime and have completed two cycles and am on my week off right now. I am at my dad's and forgot my bagbalm so found glycerine in his medicine cabinet and did my hands and feet with it the past two nights. I have not really experienced the HFS yet.....my thumbs are cracking a tiny bit right at the edge of the thumb nails, but I think this is due to the fact I have been pulling off this layer of polyurethane on the countertop that had yellowed since it did not start until after I did that. I keep saying I don't have diarrhea, but maybe I do a little...at least loose bowels and in the morning I HAVE to go right then, but I go once , maybe again after having a cup of coffee and that is it and believe me after being constipated on the past chemos, this is a welcome change.
Whenever I read the posts about how well the Xeloda is working for some of you women, I am greatly encouraged, but I don't know when we will check to see if it is working for me. I am going on vacation next Friday and quite frankly do not want to know until after I come back.
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Marybe - I agree with you, it is so encouraging to see how well the Big X is working for so many and I pray it will do the same for us. Sometimes I just think "well this is it" but then I tell that old lady in my head to stop thinking that way, and "Suck it up Cupcake". When I get on here and read these it just helps me a lot. I hope you have a great time on vacation, enjoy every minute of it. I hope you are going somewhere fun and beautiful. I want to go to Colorado in October but am not sure we will make it this year.
badboobee - I was so glad to read your post and see that you are doing so well. When I got the news last Wednesday that the cancer had spread to the colon and lymph nodes in the stomach I just wondered if that was the beginning of the end so it was very encouraging to see that Big X is working for you. I will probably have scans again in December and hope I have the same good results as you did.
K-Lo - Did you ask your doctor for a Zofran script? I know they gave it to me 18 years ago in IV form, I believe it was new then, but worked great. I did not know they had it in pill form so will keep that in mind. I also will keep the Imodium in my purse at all times. We will think positive about the Big X working great for you and that the tumors have shrunk or disappeared.
Thank you everybody for your posts and helping with some questions that run through my mind. I am new at this "new" treatment stuff, I guess like they say it is hard to teach an old dog new tricks
, but I will eventually learn.0 -
I have zofran and compezine (sp) and sometimes take it at night cause it makes me very tired. I have been taking Xeloda since July and apparently it is working the TM are going down, but for me my quality of life is so down that I am considering stopping taking it. I am going to talk to the dr on Monday cause there is blood in my nose and I have spit up some don't know if it is from the X or the Zometa which I get once a month. I am on my 7 days off and the diah. is really back was up alot of last night with it and it really cramps life....am supposed to go to a community day todays which I volunteer at but if I am going to be running to the br what is the point...
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I have Zofran and Compazine as well - the nausea comes and goes, but every so often I use drugs to help with it. I just hate being nauseas.
blondie - sorry about the diarrhea. It does suck having to plan the day around a bathroom.
I love seeing how well it works with everyone, but I know for myself it is a crapshoot - some TNs do great on it, others it is a complete flop. With my concern over a node in my neck, I'm worried I am in the latter group
.I'm most scared of being told it is still just in the lymph nodes - then I'm still stuck on this ridiculous knife's edge of probably Stage IV, but we can't call it yet.
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Sorry, Marybe, yes she was given Zofran because of the nausea from the antibiotics. I see my doc tomorrow, almost forgot... Guess chemo brain is still here. I am going to make him write me a prescription for anti nausea. I love my onc., when my employer terminated my health insurance retro actively, while I was on disability, he gave me two cycles of Xeloda for free.
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Blondie, Are you doing avastin by any chance? I got nose bleeds with avastin. I can't imagine zometa doing that.....I was on it for years and years, but now get xgeva which is a shot so much faster. Maybe they could reduce your dose or give you some time off?
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Hi all....catching up on this thread!! Man it moves fast sometimes!
Welcome Badboobee to the Diva Club!!
A note about Zofran if you are already constipated by the Xeloda, like me, Zofran will make it worse! Ask for the compazine instead - great stuff!
Blondie - Marybe is right....I took Zometa for 5 years and never had any nose bleeds from it. I had them like crazy on Avastin! Please let us hear from you after you talk to your doctor today. I hope you were able to enjoy your community day today!!
Well the countdown is on for me....tick, tock....it's like tomorrow will never get here so I can get my results!! The lady at the PET scan place said the report would be ready today and I'm so tempted to call and get it, but then if it is bad news I don't want to get that at work. DH is going with me tomorrow too so I won't be alone, but part of me really wants it NOW! If it's bad news then I can have time to compose myself and write down all my questions, and if it's good news then I can save myself hours of worry, but I guess the best thing is to wait it out. Maybe I'll talk to the onc about stressful this is and see if he has any options for me?
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Lynn,
Good luck with your results tomorrow. Thinking of you. GOOD SCANS, GOOD SCANS!!!!!
Lane
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Lynn, Have my fingers and toes crossed and saying prayers you get good results.
I think my fingers are finally starting to go....and this is my week off!! I am developing tiny little cracks on the sides like where you would get a hang nail....not bad, but a little tender. In my case I am thinking maybe this is good since it may indicate it is at least doing something.
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Lynn - I am thinking about you and praying that you will get good news. It can be so nerve racking waiting for the results. You are right, on one hand you want to know but then on the other you don't. I kind of like finding out so that if I have questions I have time to think, and when I have found out in the office I think of everything I wanted to ask when I am home that night. What's a girl to do? Anyway, I will be thinking nothing but good thoughts for you.
Marybe - I hope you can get your fingers healed without any trouble before you have to start back on the medicine. I was thinking I read somewhere that the side effects sometimes happen when you are on the off week. Have you had side effects on the off weeks before? I am just kind of wondering when I should start looking, I just took my first 4 pills this morning and 3 more tonight, and 6 more days to go, can you tell I am already counting down and I just started? Oh well, if it works that is what I am hoping and praying for. Take care.
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Everything is crossed, Lynn!
xxoo
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Jeanieb,
At first I read your post with reference to chemo 18 years ago and thought. "Wow. So. Here is a gal who hears she has mets to her colon and nodes in her stomach, gets 'a little upset' and then thanks God that 'that was all' and moves on... Should be interesting when she hits the wall." (this very lovingly of course)
Then I realized it is not within the realm of possiblity that this would be anyones reaction to a first Dx of stage IV, so read your homepage and got clear. But it was pretty funny for a minute there.
This is my third day on Xeloda and I was worried exactly like you. Here on day 3 I can tell I may get a little stomach upset so I called in for some Zofran, but other than that, no problems so far...knock wood.
K-Lo: Thanks for the tip about the on/off thing. It never occured to me, though I have crippling chemo brain and I will have to set my phone and do post its and everything else. No idea what would have happened had you not mentioned it.
Suze: Thanks for the tip on eating. I did have to pull into a food mart for some cookies, which in and of it self is not uncommon for me. But, in this case it was due to a tummy that needed quieting down. Mrs. Fields chocolate chip to the rescue once again! (a bow to Kon Kat wherever she may be).
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CancerDivas Scan Calendar!!
I was thinking I would love to be able to remember everyone's scan dates as I DO care and I want to check in and give support and just plain old get the dirt in a timely fashion.
So I set up a GMail account we can all access. I put my scan appointment into the Calendar. I would like to invite you all to put your scan date on the Calendar as well so that we can all keep up. Of course everyone can check the Calendar for same too.
- Go to Google.com
- Click on GMail
- Username: cancerdivas
- Password: 1cancerdivas
- Click on Calendar
There you are!!
I hope this is usefull.
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Hi. I have read this entire thread and would love to be a Xeloda diva. I will be starting it very soon--after my single sternum met is removed. I should know in the next few days when the surgery is. Lots of good information here, you have answered lots if my questions. My big question: I do lots of activities with the children at church, we are starting rehearsals for tthe Christmas play on Wednesday (I am the director)......am I going to have to worry about being around kids? How much does the X affect your counts?
And, Lynn, I am chanting good scans for Lynn, good scans for Lynn....
Another Sue
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Thank you everyone for your well-wishes and prayers for tomorrow. It warms my heart! I will post tomorrow with the results!
Marybe: Hope your "Working Hands" will help with your fingers!
Welcome Sue! You also get a big gold star for reading all these pages!!
What sort of surgery are you having to remove the sternum met? I've never heard of that. My first met was in my sternum too (and it was the only one at the time) so just wondering why they didn't mention this to me. I have not had any problems with blood counts the entire time - even at the highest dose, my counts didn't take a nosedive like with some chemos. 0 -
My mets started in my sternum also.....seems like a pretty common place....problem with mine was it was very extensive and if they had removed it with surgery my spine probably would have collapsed.
Jeanie, I have only completed two cycles so far so this in only my 2nd time of having a week off and no, nothing happened the lst week off. I like you would get up every morning and look at my hands thinking there would be a change, but I am sure it takes awhile for this stuff to build up in our bodies....most chemos are cumulative so I am guessing this one is also. Even though I am really not having SEs yet, I seriously doubt that I am out of the woods yet. I was smearing antibiotic cream and Curel (think that was the name of the stuff they had at the office) on my hands all day....no better,but not any worse either....just a little cracking at the nail margins.
Super, So far Xeloda has not bothered my counts at all. Christmas play rehersal already!! Yikes, it will be here before we know it. I am a hygienist and am constantly exposed to people's germs close up, but amazingly enough I seem to be the one person in the office who does not catch colds all the time. I wash my hands a LOT.....maybe not a good thing when trying to avoid HFS, but I have not picked up any colds or had the flu for a long time.
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So I tossed my cookies last night, just before dinner. I decided to skip last nights dose and this mornings. I told doc I was throwing up and he seemed really sad, maybe he was hoping I wouldn't have any SE's. I don't know, but he did write me an rx for Zofran (yay!). Also, scheduled my third pet/ct scan, October 3 and followup with him on Oct 10. Hope there is more improvement.
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Zoh, you're a doll for setting up calendar!
I don't know how I tipped you to on/off but you're welcome. :-D
Lynnie, sleep well and think positive thoughts. Go girl. Xoxo0 -
Zoh, you scanned tomorrow? Did I read calendar wrong?
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K-Lo
Yes. I scan (whole body PET/CT) in the morning. I am frightened about it, but not paniced. I know from last weeks MRI that I have new mets in most levels of my throacic spine and a couple levels of my c spine. I can feel my Left shoulder (an old one) is hot and Im starting to feel lots of other aches and pains and wondering if all of them are new mets too. I have a sore spot on the back of my skull that is quite worrisome. I could go on. Usually I go into scans very positive, but not this time. Im not really down about it, just pessimistic. I know I have not been on effective treatment for better than three months, so I expect progression more I guess. I think Xeloda will help no matter what the deal is though. It will be what it will be.
Re: On/off - you mentioned the pill pack reminder thing so I would remember to start taking my meds again - or to stop taking them.. etc. I just never thought of keeping track of that....duh...
Lynn1: I hope you have great news tomorrow Lynn. Maybe we will celebrate with lots of ice cream together!
Zoh
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I will be thinking of those having scans today. .
I used some hydrocortisone cream in combination with all my other mixtures last night at the advice of the dermatologist.....just rubbed some on the cracking areas and then put on the bag balm/ working hands and then the gloves.. They seem better this AM. Oh the dermatologist also told me when I was asking him about my dry crepe paper skin, always use CREAMS, not lotions....he said lotions are mostly water and don't do as much good for skin.
Have a good day everyone. Today we start at 7 so it's an early one for me.
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Hi LivingIt - I am with the other xeloda divas who have written here - don't let the "potential" SE's scare you - some folks have practically no SE's at all! I have had great results from the xeloda and the SE's are managable. Ditto for Marybe's advice - start the preventive measures asap. I have used household gloves whenever I even think about putting my hands in water, glop up my hands and feet before bed and when I get up in the morning, wear comfortable shoes that don't rub, and have a compozine Rx on hand just in case (never have needed it). Best of luck hon - onward and upward! SUE
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Thinking of all of you waiting on news/scans. Here's to LOT's of good news!!
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Hello everyone,
I'm not on Xeloda, but recently discovered what I think is the best skin product ever - Aquaphor. I've used bag balm for years, but, for some reason Aquaphor works for me better. It seems to heal cracking heels and dry calves, and absorbs better and works longer. It feels like bag balm or vaseline going on. Don't know if this might help someone, but thought I'd add it. Sorry if it's been mentioned already here.
Good luck to all on upcoming scans.
Lane
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thanks for asking but no Avastin....will ask him when he calls!!
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Lynn..I hope you have great news tomorrow!!!
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Lynn, I am having the part of the sternum than contains the met resected and then some reconstruction. My onco originallly said no surgery for mets and suggested radiation and Xeloda but I did some research and there is some evidence that solitary sternum mets can sometimes instead be a loco-regional recurrence from the inframammary lymph nodes....so I found a cardio-thoracic surgeon who is willing to do the surgery and all docs now agree it will be surgery then Xeloda and radiation or not will depend on the margins since on the PET/CT it looks very contained within the bone marrow of the sternum. We won't know for a while whether this is the right thing but I just couldn't do radiation for it, I can't explain it any better than that.
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