All about Xeloda
Comments
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Thought I would share my experience on xeloda. I have been on it for two and a half years. I found bag balm worked best for me with big socks. The feet got worse over time, but I learned to know when to get off them. Most of the time, I felt pretty good. I had my dose reduced twice. It has been good to me. My tumor markers have gone up last three months. I had pet scan Friday My time on xeloda may be over. I will never have a pet scan a few days before Xmas again. So stressful. Good luck to all.
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Renee: Thank you so much for your post: I'm hoping to get a few years out of it. Starting my 3rd cycle tomorrow.I hope your pet scan has good news for you!0 -
Dear Renee, sorry you are going to be stressed waiting on results over festive season. Each time it stays stressful, doesn't it? We wish you the best for the results and keeping busy over this hectic time may be of help.
The Mods
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Grumble grumble grumble.
Every year my DD makes a family party for Chanukah. I usually make latkes or donuts to bring. This year my son (who is in culinary school) is making donuts and either rolls or pitas. DD told me her husband's GRANDMOTHER is making some quiches, DD is doing soup and some salads and also latkes. She said I shouldn't do them since it's too much standing around, it's too much for me. I'm going to tell her I'll do them anyway.
Good grief. You'd think I had cancer or something....
Leah
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holy mother of side effects:(
Something I can't find posted about / or maybe no one talks about....... I don't know...........
Don't know what to do...
"Down there" dryness and sores??
This is terrible !!!!
It's not yeast - tried treating for that - HUGE HUGE mistake:(
Merry Christmas????
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poniesandpuppies- so sorry to hear about your issues. I would call you doctor tomorrow morning and ask about what to do. If they don't know, put in a call to your gynecologist. Hopefully they have an answer. And I know you aren't the only one who has had this happen. Just don't know what the solution is. Maybe TMI but I know I have to lube down there now.
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ponies I had one sore pop up down there during my first cycle. I didn't tell dr for some reason. Just kept it as dry as possible and put some antibiotic ointment on it. It cleared up on its own in a few days.
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Ponies,
My wife has also been dryer in her genitals and has to be more careful, using extra lubrication before sex. I believe the mechanism of this side effect is identical to what causes HFS, and mouth sores. So all the same things that work for HFS should work for vaginal sores. A uridine based gel would work in my opinion.
Make sure your ObGyn understands what's causing it: when my wife's oncologist sent her to the dermatologist for HFS, the dermatologist had no idea what she was dealing with, and prescribed hundred of dollars of counterproductive drugs (both steroidal and non-steroidal anti-inflammatory creams), before we bumped into the right remedy (uridine cream).
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Theuridine cream is for HFS? Where do you buy it?
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well 5 hours in emergancy today to figure out what is going on - well it takes 5 hours to see a dr and 3 minutes for diagnosis
Gciriani - you were 100% right - what ever the heck is going on with my mouth - with the lesions and sores has decided to happen "down there" too - let me tell you this is a whole other kind of hell:(
Anyway I wanted to post - Epson salt sit bath - how simple and what a huge instant relief - and pain killers--- seems to have calmed everything down. Yahoo!!
Dr has also given me Lidocaine gel to freeze the area if needed.
Thanks for the feed back everyone - it truly helps to know I'm not alone
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Romansma,
I think you can find all the posts I made on Uridine if you search the name of this chemical in this forum: I've posted research articles, info about clinical trials and other bibliography. I've also corresponded with some of the researchers and specialists using it in Europe, and posted the recipe. The compound It's not available in the US, so I've been compounding it buying the ingredients from chemical labs, or using a similar derivative bought through Amazon. I'd be glad to compound it for you or others.
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Not sure how long since this has been mentioned, but just wondering about the longest period of time Xeloda has been effective.
I have been on Xeloda since November 2012 ( just over 2 years) with excellent results so far. (I started with mets to the brain, liver, lungs and bones and regression everywhere except the skull, shoulder and part of my spine which gives me little trouble). I am starting to get concerned as to how much longer before Xeloda becomes ineffective. I think that I have heard a couple of ladies had been on Xeloda for 3 years, but just wondering if there is someone who has been on Xeloda for longer. This also hopefully may give others some positiveness.
Warm Hugs
mandy xxx
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Mandymoo--I've only been on Xeloda for six months but my oncologist had a patient on it for 7 years and currently has one who's been on it for 5 years. It sounds like it's been a great drug for you. Hopefully that will continue for many more years!
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Thanks for that information GemStateGir, I was hoping to get some positive news.
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This is my 3rd cycle . I'm on my off week of 7 on 7 off 3000 mg per day. So far ,so good. The palms of my hands are dark spotty. No signs of HFS on my feet. I haven't had the big d or c. I've had a slight headache every now and again. I eat plenty of fresh pineapple .which may be helping with the nausea. I take probiotic enzymes with my meals, which may be helping with digestion. My finger nails are growing like crazy. I look so forward to my week off because I like to sleep late, and I don't have to worry about eating in a timely manner. My doctor told me to not worry about 12 hrs. just take it at breakfast and dinner so I wouldn't forget to take it. I'll know if my tumor markers are going down at my next appointment next month.
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Hi All! My tumor markers have dropped since I started the Xeloda/Taxol combo in late Sept., from nearly 800 to under 200.
I know a lot of people say pay no mind to tumor markers, but for me, they have always rung true as to what's going on inside.
That's why each case is so different from the next. We have to find what works best for us as individuals.
Who knows how long I will be on this combo, or how long it will work. But, for today, I am grateful.
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Great news skylotus.
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skylotus: That's great! My rising tumor markers was one on the reasons I decided to try Xeloda.
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congratulations sky lotus
Just had my first scans and bloodwork on Zeloda. Tumor markers dropped 80 points and scan was (as my onc said) the best ever!!
I'm elated
Maire
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Congratulations Maureen! That's fantastic news.
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Thanks leftfoot, Mscal and Maureen, it's a little golden nugget, but I'll take it!
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So my markers are still quietly rising. I'm having a bone scan to see if anything shows up. My recent CT showed stable disease, increased sclerosis re bones & improving lymph nodes.
I'm feeling pretty good tho, so am not too worried. In the meantime its X as per usual.
I hope my markers can start going down like yours Skylotus
kt
Ps- Happy New Year! (Here it's tonight- tomorrow I guess for those of you up north!)
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kt: I hope it's nothing and you'll be able to continue with xeloda.Happy New Year To You Too!!!
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kt, hope your scans come back with good news! I'm on Taxol AND Xeloda. Not sure which or both are responsible for lower tumor markers....
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My markers are up A LOT. Onc called about that last week, said to finish this cycle of Xeloda and we'll retest. You know it's not good when onc calls and you haven't called and left a message....
Did you know that chemo brain can worsen HFS? Yes, indeed. Chemo brain = forgetting to take care of feet for a few days. Hot red feet reminded me! So I used my cream and in less than a day things are markedly improved. Sigh. Talk about one SE leading to another!
Leah
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Thanks ladies.
It 2015 here now! Can't believe its a new year already. I've woken up to glorious sunshine
It's so weird being stage IV. Sometimes, actually most of the time it feels like it's happening to someone else. Last night we watched 'We bought a zoo' and it really hit home. This is real & who knows how long I have to go...
Leah, hope your markers start behaving & go down real soon.
Here's to a positive, fantastic new year
kt
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Leah--I'm going through something similar. I usually only have my tumor markers tested at the same time I have a scan but for some reason they were ordered at my last appointment on December 16th. The rest of my blood tests were great and I got the verbal results of those at my appointment on the 16th. I was shocked and upset when I logged on to my cancer center's website a few days later to see my blood test results and discover there were also results for the tumor markers which had jumped a lot in the last 3 months. I called my doctor and she said the same thing yours did--finish this cycle of Xeloda and we'll see what's going on when I get my next scan on January 5th.
It definitely has affected my enjoyment of the holidays. When I haven't been distracted by the holidays, I've been worrying because I can't figure out any good reason this would happen. Needless to say, I'm not looking forward to my scan next week. Unfortunately, they've only been taking my tumor markers sporadically this year so we don't know for sure if they're reliable for me but I'm thinking when people say they're not reliable it's because they're normal and cancer is present (not because they're high and everything is fine).
Oh well, I know it's a roller coaster ride and I'm hoping against hope that everything is OK for both of us.
Hope everyone has a good New Year!
Pat
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My cea 27 was up this month as well. Highest it has been for the past 4 blood draws. they take them every 3 weeks. My oncologist just cleared me for an every 6 week visit instead of every 3 weeks. So I texted her to see if I need to be seen at 3 weeks instead. We decided to wait for the 6 week visit as my levels vary between 30-50. Anything above 40 is abnormal. I had a scare in July with my tumor markers it was at 53 after being at 30 so we scanned early. Everything was fine and the markers were down the next blood draw. I am trying not to worry about it but my abnormal head scan in Novemember has me worried they are indicating that things are acting up again. Sometimes, I think we get too much information. I pray that your markers don't indicate anything bad and that you just have a wide range of "normal" for you.
Best wishes.
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happy new year everyone!
I'm glad to have found this topic! I was on faslodex for a year and tumor markers cea and ca 25 27 have been rising close to 100 so dr ordered scan and couple of my spinal tumors are getting bigger. The rest are the same. So it seems the markers are good indicators for me. Now dr wants to switch to Xeloda so I'm checking on it. This site has been very helpful for me since my mets diagnosis! I just haven't found time to keep checking. I have 2 kids under 10 and still working full time. Been ok with SEs from faslodex so I kinda sad to switch. I also thinking of taking time off when I start treamment. Ill appreciate any advice, thanks!!!!
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Minnie72-
As a mom of 4 (12, 10, 7, 4) the biggest thing you need to know about being on Xeloda is that you will be fatigured. I don't work full time and I am still tired. So my biggest advise to you is ask for help and use it when people offer. Listen to your body. And if somethign doesn't feel right call you doctor. You can adjust both the dose and the time schedule of when you take the drug to help with SE. the first few cycles ususally bring nausea so get something from you doctor fo that. Take Xeloda with food. They say 12 hours apart but that isn't set in stone. Be kind to your hands and feet. Try to stay off them as much as possible ( I know easeir said then done). Be prepared for some sort of switch in bowl movements ( Immodium helps if you get the big D). Most important take care of yoursef. Get your rest in.
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