All about Xeloda
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Finally, some good news. After being on 4,000 mg Xeloda since November 2015, 10 of my spots are currently inactive. Liver, neck, L2 and Humerous lesions are finally decreasing and the intensity has dropped per the PET/CT today. Tuesday will know the CA 27/29 score! First time since diagnosis of MBC in October 2014 that I have had positive changes. Did a clinical trial, multiple drugs - so farlove Madam X. How you all doing with the Vick's VapoRub? Still working wonders for my feet and hands. Lovestosing try Vick's VapoRub - very inexpensive and after all the creams that I have tried, works great so far. I put it on at night and use diabetic socks. Others have tried it and seems to work for them. Next week my appointment with the Medical Marijuana Program in Minnesota. Going to try the high CBD oil - obviously can't use at work, but THC so that's good. Not confirmed as of yet, but studies look promising. Goldi, Lulubee and Babs - going to try the Sketchers for work! Happy Easter to you all!
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mediclisa, I'm relatively new on this forum but I am so pleased to read your post. It's great to hear that Xeloda is working so well for you. I am hoping my first scan in May after using Xeloda since February will mirror your success. It's a tough old road we're walking on and it's lovely to hear happy news! I have learned so much from all on this thread and I bought some black sketchers today too - they feel great. Going to Edinburgh for a few days soon so I think it will help when I go walking and shopping. Hope you all on here have a lovely Easter and hope you enjoy some well earned chocolate eggs!
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Hey all, I am out of town visiting family. Welcome to the new gals.
Lisa, I'm liking the Vicks the best. However just before leaving for MI, I had labs done last Friday and my TM's have jumped from 60/70 ish to like 100. I see my MO on my return date, which is Thursday.
Lisa, also glad you are having great results. I have read all posts, but too tired to reply to all. Spent all day with my mom ER.
Wishing everyone a Happy Easter.
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Goldie, I'm sorry to hear your TM's went up. I started Xeloda in November and by January my numbers had climbed to 110. We decided to stay the course giving Xeloda and wait and see. February they started to come down. Won't know about March numbers till Tuesday. Hopefully, you can stay the course and see what happens. Glad you are with family, rest and enjoy them. Eat the ears off the chocolate bunny!
Lovestosing - try the Vicks VapoRub - it has helped a few of us. I also have learned a lot from this thread. Stay on the roller coaster! You also eat some chocolate bunny ears! We all deserve it!
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hey everyone,
Still on xeloda.. Stomach is not doing so good, TMs started rising a bit yet.. Still a doable chemo. Been away for a while, so couldn't read all posts.. Touching the pills? Been doing that since the first day.. Not the first of my problems.
No Dairy with other protein, please.. Consuming fresh veggies & fruit esp. Apples help my stomach. Yet this is chemo, normal to feel a bit off.
Strongly suggest mood &anxiery meds.. They support the brain sending good vibes to the body.
Still on heart pills. This gal forced MO back to get on X after it gave me a heartattack, remember? Now heart is supported so I will keep on with X for as long as possible.
Reminder.. I have hfs on the face! Sebamed q10 eye cream (small tube) has helped better than any other medically adviced creams. Keep that in mind.
Susan, I am sooooooo happy this is working for you. Missed you, come back for another visit 😊
I stopped counting cycles.. Haha
) good luck everyone. Ebr
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Mediclisa-glad to hear your lesions have decreased- that's wonderful!!! Do a happy dance!!!
Wendy- hopefully the increase in TM's is just a temporary blip It's really the scans that matter! Enjoy your visit with the family-that's what it's all about-being with your loved ones!!!
Love to sing -I just bought my second pair of skechers- while they are definitely not fashionable, they really are comfortable and make a HUGE difference!
Susan-glad X is working for you.
Wishing everyone a wonderful Easter weekend,
Babs
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Hello All- I don't post much but def keep reading. I do have a SE question if anyone has input. I started Xeloda back in October and I have been lucky enough to not get the HFS yet. Just a little naseau. However, what I have noticed is that my eyesight seems to be effected. I have periods of time when I feel cross eyed but I see ok. I'm having a hard time determining if this is a SE or if I am just simply exhausted and I don't realize it. I am a mom of a 2 1/2 year old and work full time so I don't have the opportunity I feel like to get the rest I truly need but even when I get a full night sleep I have these issues with a foggy head my my eyes feeling the way they do.
Does anyone have any experience like this? Thanks so much and I hope everyone is enjoying their weekend.
Rene
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Rene. I get yuck in my eyes. I wear contacts and since on X,my eyes run and get pus in them which makes my sight blurry at times
Babs
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hi all- my mom just finished her last dose of xeloda. Sadly we learned it's not working. Anyway she has giant blisters on her feet. Anything to do for the blisters once they've already formed? They are getting bigger each day. Do the creams help with the blisters at all? Thanks for your help
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babs6287, I was surprised to find out my watery eyes with the pus-like white goo was actually an indication of very dry eyes. I had that develop several years ago, before my first cancer diagnosis. My eye doctor put me on Restasis which cleared it up. Restasis is prescription eye drops specifically for dry eyes. I have been on it for years now and it has worked for me, although my tear layer is still more thin than normal. Talk to you eye doctor about your eyes watering and having the pus-like discharge. If it is because of very dry eyes, there is help for that beyond just drug store drops although sometimes those are enough.
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Thank you goodbye gal!
Babs
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dear Rene,
It might be a SE or just that ypu move too fast. I experienced two incidents of passing out because of sudden movement. These toxic stuff interfere with everything in our bodies, not all can be detected by docs, they admit themselves. Try to rest as much as possible, eat fresh plese & ignore toxic people.
Work house or professional never ends. Tey to delegate as much as you can to anyone. My 11 year old wakes up by the help of DH, prepares his own breakfast, gets ready for school himself and prepares juices and fruit plates for me sometimes. He makes the greatest scrambled eggs. I am so proud that he can manage things himself -totally not interrupting on purpose-
I lost to dear friend to MBC last year you resisted delegating stuff, worried so much she would lose her hair, was way overconsiderate for others, running her business with dumb stuff, covering up their faults, doing all housework herself, as her family was unaware all she was going through.. I begged her for 2 years not to do it all.. Yet it was her life and choice. She passsed away way too soon, just on her second line of therapy.
Anyway, you think and act for yourself first, please do. It matters A LOT.
Hugs
Ebru 3rd year with Xelod
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dry eyes are a SE of Xeloda. I don't wear my contacts much anymore because of it. Doors help
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ok that's supposed to be drops. Oops
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Yeah I get a little tired, not dizzy but feeling a bit strange if I do too much or if I go too long without getting something to eat. I was out shopping today and got a bit carried away! I started feeling a bit light headed but once I stopped off and got a sandwich and a drinkI felt Ok again! Found a great Sketchers shop today which has the new season of sandals with the comfortable foam in them so I indulged myself! I'm now ready for the Scottish summer if it ever comes!
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I have had to update my contact prescription after changing treatments. My eyes were different on Afinitor + Aromasin than they are on Xeloda. My eye doc says it's not all in my head, that meds can affect vision. I do have the watery eyes at times, and yes, goo collects in my tear troughs. I often feel like there's a film on my contacts, and sometimes I just have to take them out midday and rinse them with solution. My doc suggested Restasis but said it's expensive so he recommended I first try a specific OTC drop for dry eyes. I can't remember the name of it but it was a tiny bottle with a green label.
Aren't I helpful? ;-D
I should probably look that up because I should still be using them. My eyes were so dry over the weekend than a contact fell out onto my cheekbone.
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Hi everyone, I haven't been here in a while, just checking back in. So far so good with the Xeloda but scans next Friday so hoping they say the same thing but time will tell.
Lulubee, were the eyedrops "Blink (for contacts)"? That what my eye doctor recommended way back when I was on tamoxifen and they're in a little green bottle. I'm having dry and goop covered contact issues, too. I had been chalking it up to spring allergies even though Spring has been kind of reluctant here this year, but now I'm wondering if it's really the Xeloda!
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Lulu, how long were you on infinitor and aromasin. My onc says he won't put me on it, cuz he's never seen it work and the SE's are horrible. He also asked me if I had blurred vision, so that just proves it's a SE of the X.
Roses good luck on your scans. Worrying about blood work is bad enough, but when scan time comes...Oy Vey!
My TM's had gone up, seen my onc yesterday. It was only like 15 and 20, so he was not too concerned. We are gonna up my dose to 7 pills a day. Not looking forward to that. I will take the 4 at night. He say's X only works for a bout a year, and I have been on it a year now. But told him I know of girls that have been on it 2 and 3 years. Next will be Ibrance for me.
Just got back from a visit in MI with family.
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Goldie- I've been in Xeloda since December 2012 so I blow that 1 year out of the water. So hang in there.
Scan day today to see how I'm doing.
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Fingers crossed you great results Leftfoot
Babs
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roses, I will dig around and see if I can remember what the eyedrops were. I'm pretty sure they were not Blink or any of the usual contact lens re-wetting drops. They were lubricant drops for dry eyes. I'll let you know if I figure it out.
goldie, I was on Afinitor + Aromasin for 18 months! So I would say it worked pretty well for me.
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Hello all! I will hopefully be starting Xeloda next week once approved by my ins co, so I thought I would go ahead a switch over here and read a little. I just finished 3 months of Ibrance with no luck. Scan I took yesterday showed tumors only got bigger so onc said no more. Very disappointed since so many are doing so well.
Just wanted to say hi and here I am, ha! Good night and God bless!
Nicci
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Lefty, I blow most things out of the water. I was told I probably had 1-2 years to live. Well, it's been 2 years now! So there! Hoping to hear good results on your scans.
Lulu, that is encouraging. He did say he's only tried it half a dozen times or so. But it's scary to try something that your doctor says he doesn't have much faith in. Did you have horrible SE's with it.
Welcom NJ, hoping Madame X does right by you.
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Nicci. Welcome. Once again I'm hoping Xeloda works for you as it is for me
Babs
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Goldie, I bought my new sketchers and love them. I did 6,400 steps at work today and my feet feel good. Weird thing is though, I stumbled a few times tripping on my feet. Wonder if they are lower than my Asics tennis shoes. Have to pick up my feet more I guess. Still using the Vicks - have found to be the best. I was also on Afintor and Aromisin - didn't feel the side effects were to bad. Over all the years since 2006, I think the Hand and Foot Syndrome has been the worst side effects. Keep your spirits up - I have been on the 4000 mg. dose (8 pills/day) since November, and tolerating it pretty well. I did a clinical trial Lee 011 with 2nd generation Ibrance for 4 months - side effects not bad at all.
Leftfootforward - it is so encouraging to hear that you have been on Madame X since 2012 - I hope it continues to work for you.
Babs - great job still on the 4000 dose - my CA 27/29 went down another 9 points! I haven't had a decrease in numbers since 10/14. 107 to 44.5!
Nicci - welcome - sorry you have to be on this post - but there are great people here with good advice. Good Luck with Madam X!
We had a little snow here in St. Paul, Minnesota today - waiting for Spring!
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Nicci, good luck on Xeloda! I've been on it since Dec and so far it's been fairly easy and working well, hope it's the same for you!
MedicLisa, congratulations on the lower tumor markers, wishing you continued great success!
We have snow today in New England, kind of like cancer I'm a little sick of it by now, but what are you going to do?
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Lisa, I too find the Vicks works the best, especially putting socks and gloves on over it. I may have to run the Afinitor and Aromasin by my onc again. Glad the Sketchers are helping with your feet. HFS is no fun at all, that's for sure! 8 pills a day, oy vey!
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Goldie, I PM'd you about A+A side effects.
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Hi, I have been off the site for a few weeks, just read all of March up to today, quite a few pages!
I am a tad discouraged, as I have used X for 19 months, the last five months at 1000mg am and pm, 7/7. I have no HFS, but am finding increased episodes of nausea, heartburn and intestinal distresses. I know that as age increases, its possible to have greater sensitivity to drugs in general. It feels as if over time, my stomach lining and Gi lining are becoming chronically irritated.
When I have had holidays from X, things clear up and I feel like myself again. I worry tho, that taking another X holiday might keep it from working. We have a trip planned to do a month of walking in Europe this June. When I am feeling well, I am SO excited! The problem is, unless I get extra time off, I won't feel well enough to go. My CA 15 30 is stable but above 45. Pep talk, please?!
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MameMe, I understand. During my off-weeks, I can easily imagine going on trips and having fun, and I can be super productive. But then midway into an on-week, my brain goes fuzzy and a sort of malaise sets in, and I cannot imagine ever doing anything again. It's like having medically-induced bipolarity sometimes, this going back-and-forth between these two versions of myself every few days!
I have taken an extra week off of Xeloda for summer vacation and Christmas for the past 2.5 years. I always fret about my tumor markers, so I understand your hesitation. But golly bob, I feel totally like myself that second week off meds, and feeling my whole self rise up to play every six months somehow helps keep me going the rest of the time. It's good to know all of me is still in here! And my tumor markers have never been affected by the breaks... so far. Fingers crossed for this summer's break!
For your tummy/gut troubles... can you consult with a naturopathic doctor? They are so helpful with things we can do to support our digestive tract and our whole being while on these meds. I consulted with one who specializes in cancer support a few years ago, right after I started on Femara and it was knocking me sideways-- I felt like I was 90 years old and I still had three kids to raise and lots of work to do each week. Now, on my third line of treatment since Femara, I still follow her advice and when I do, it definitely helps. I avoid sugar and processed foods for the most part-- so hard on the gut. I take anti-inflammatory supplements and probiotics faithfully, and toss back a green drink before my coffee almost every morning of the world (I call it my magic potion because it is about the only thing that gives me a noticeable boost of energy). During my off-weeks, I take supplements to support my liver in processing all these meds. I have a spoon of raw honey before bed to soothe my gut and fuel my liver processes till morning. Little things like that can really shift things over time.
I would definitely go above and beyond to get ready for something as amazing as a month-long walking tour! WOW. That sounds like a dream!
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