Scan show progression to liver - although my lungs are now clear. So with sky high and doubling CA15, we are switching to Xeloda this week. Nervous but grateful for all the information here.
How many of you are on this?
For how long?
Do you still work? I own a business and until I can sell it I am stuck. The only saving grace has been the COVID because I haven't had to tell anyone why I am working from home so much and not attending in person meetings.
Grateful for you all, Allison
Hi Allison, I’m on Xeloda 1,500mg daily no week off. I started in October 2020. Happy to say, CA15-3 dropped by 30% in January blood test. Am due for another blood test on Feb 17. Hoping the trend is still downwards. As I am on low dose, I am also happy to say that I have almost no side effects. Almost because although I do not suffer from hand and foot syndrome, the soles of my feet are starting to turn a darker red. No pain just reddening. In the beginning around the 4th day, I experienced tummy upset. Not diarrhea. After that, no more tummy issues. I also have not experienced mouth sores. What I like about Xeloda too is that my WBC is within the normal range unlike Ibrance where it went quite low. I must say, Xeloda has been very kind to me so I am praying really hard that it will work for a very long time. I hope it will be good for you too. Will include you in my prayers🙏
Thank you so much. Do you follow any special diet to keep from having any digestive problems?
Allison, I do not follow a special diet. I eat whatever is on the table to regain the weight I lost prior to Xeloda but my appetite is not 100% back to normal yet. I lost a lot of weight and experienced much fatigue during my WBRT.
Thank you
Look up Celebrex to minimise side effects. I’m on 1300mg twice per day and have no side effects
interesting - I will ask.
Allison, I forgot to say that yes my husband and I also have our own business so we both still work from home. He goes to the office often but I haven’t stepped foot in the office since June last year. As you say, Covid has been a blessing in disguise😊
My business partner (not my husband) and I have started to pursue a company sale or a sale of my shares very vigorously - its tricky because I don't want/have to share my diagnosis with buyers. I want to be free to enjoy the time I have left.
That’s a good idea Allison. Ours is a family business so I don’t have the option of selling to people outside the family. I hope you get a good price for your shares.
At some point $1 would work
Hi Allison, I’ve been on Xeloda for about 6 cycles now at 1500 mg morning and another 1500 mg evening, 2 weeks on and one week off. I had some blistering on my feet early on but that has gone away. I put cream on my feet morning and evening and wear socks to bed and other than a slight reddening, my feet are fine, My hands have had no problems and neither have I had mouth sores. I did start on a dose of 2000 mg and had some problems with vomiting but I was also weaning off an anti anxiety medication that I had been taking for hot flashes, so we aren’t positive which medication caused the vomiting. I have less appetite than I had but I’m not nauseated. I went on it when my CA 15 went up and I developed a lesion in my liver, much like you. My CA15 has gone down from the 900’s to the 300’s and seems to be sitting there. I just had a scan last week and will know Tuesday the results. I’m hoping they are good because I’d like to stay on Xeloda. Good luck with your changeover! Elaine
Thank you
Wow! You have a plate full. I didn't have much luck with Xeloda but most on here do alright and gain a lot of time. Wishing you well,
Cheers, June S.
Thank you
Hi. Also starting Xeloda next week after progression on Ibrance. Nervous about the side effects. I work full time as an OR nurse and I really want to keep doing that. Good luck & keep us posted.
you too - such a marathon we are on
Good luck on Xeloda. I pray you have minimal side effects.
Hope you do well on Xeloda!
Hi, this is my 2nd week o. Xeloda I have progression to liver and the Affinitor had reduced bone Mets. I do not feel like it’s doing any good stomache still gets bloated I have discomfort in liver area. Onc says need 1 month to see how it goes. So glad. To here mostly have received good results I’m praying it helps. SE effects are under control a little swollen on hands and feet
And I moisturize. I have bone aches still.
So glad to hear that many are working, I can work from home but once vaccine comes around no excuse work requires some travel. One day at a time.
yes one day at a time - thank you for responding
Give it time to work. Sometimes effect is also dose dependent. I started on the lowest dose possible (1000mg a day) for a month and the tumor markers still rose. My oncologist increased the dose and next blood draw after a month and a half on the increased dose showed decrease in tumor markers. Don’t give up so quickly. Give the medication time to work.
I had my appointment yesterday and they want me to start at the highest dose - no "easing in" - don't have it yet because I am waiting for insurance and CVS Specialty Pharmacy to get it delivered. My husband went out and bought an entire bag full of skin creme for me - he is so cute.
I guess oncologists work differently. I just hope you don’t experience side effects. Let us know how you get on.
I’m on my third round of xeloda. 500 twice a day. My onc will up it in 2 weeks. Very mild mouth feelings in contrast to sores. Pink hands and feet. May
Be something happening in uterus. Will know next week. It precedes xeloda.
This would be so interesting if it wasn’t so frightening.
its always something...we just want a little break from changing meds 🙏 for you
I started Xeloda Sept 24, 2020 after Ibrance was causing blood result problems & not improving my situation and was very costly. I had been taking 1000mg in the AM & 1000mg in the PM-one week on and one week off. Finally, my CA 27-29 levels are beginning to lower. I did develop the hand & foot syndrome about 6 weeks out-peeling skin on the feet & hands along with the redness on the feet and some pain.
Doc lowered my dose to 500mg in the AM & 1000mg in the PM Jan 10, 2021 due to the hand/foot problems. During this last month the soreness in the feet has subsided along with the skin peeling. My thumbs are still peeling but if I apply a bandage over the end of my thumbs, the peeling slows down.
I moisturize my hands & feet nightly with Bag Balm & wear socks & gloves. In the morning I apply I apply Bag Balm to my feet & hands. My CA 27-29 level went up slightly this month due to lowering the dose but the doc is so happy that something is finally working for me and not causing BIG problems.
I have not had any problems with diarrhea or nausea. At this low dose it has been very well tolerated unlike some who have posted on here but are taking a large dose.
I wish you the very best with your new therapy & sale of your business.
Thank you so much this is very helpful I hope we can all stay on this for a long time
I’m on Xeloda as well...my oncologist has a patient who is still taking it after two yearsBarb xx
Barb thank you for answering - I was thinking about you as I know its been tough for you lately. I hate to post and sound like I am complaining, I feel as though I have had it very easy and sometimes it seems like a very elaborate practical joke. I couldn't get through this with out all of you and I want you to know that I read more than I post and you are in my prayers.
Best of luck to you w/your new treatment. I am on my 1st round of Xeloda. 7 days on 7 days off. So far I am tolerating it very well. Just a little diarrhea. Immodium is working. I hope you tolerate it well & hoping it works for both of us! :)Bev
Thanks - my doc says I have to call them the very first sign of diarrhea - apparently he had a lady who was hospitalized because of it and he doesn't want me to have it at all.I hope it works for both of us too. My doc also treated my sister so he is taking this journey very personally and he said "This is the drug that will work!"
Wishing you all the very best on Xeloda.
I’m on my 4th cycle and I’m doing ok with minimal side effects.
My latest CT scan after 3 cycles showed all was “stable”.
I’m really hoping I can stay stable for as long as possible on this med as I currently find it very doable.
Jo
I am so glad to hear this prayers to you and thank you for answering
Also on a strange side note - my CA-15 is over 8000 yes thousand not a typo but my PET scan shows that my lungs are COMPLETELY clear..those were my initial mets. Still have bones and now some tiny liver mets so that's why we are changing.
Hi Iwasborntodothis. What does your onc say about your markers? Have they been this high for awhile? My CA 15 is 3394 and CA 27-29 is 6336. They have been increasing about 2000 a month, so something is definitely attributing to their aggressive activity. I've had MBC to the bones since 2016. It progressed to the liver last year and my largest lesion is 2.8. I was therefore put on Xeloda, have graduated to 3,000 mg/day and going into my 3rd month. I am in some pain and if things don't calm down, he'll want me to have a biopsy of my liver to see if my cancer has changed. Have you or any one else on here ever had a liver biopsy?
Can't help with the biopsy question but I've seen it on here somewhere before.My doc says that the CA15 can indicate something coming in the future that doesn't show on scans yet. So he didn't change my meds right away as we watched them rise on Ibrance (they have never been below 600). He eventually got a PET scan approved which showed more bone involvement, so we did some radiation and added Xgeva..still went up, changed to Faslodex, doubled twice now at 8000, so I am moving to Xeloda. The changes were subtle based on scans, tiny expansion to bones and now liver mets and more lymph node involvement BUT lungs spots are gone. So, I guess that as much as I wanted to believe they were meaningless, in my case, they were. I hope that helps
Thanks. It's that "something" coming in the future that scares me.
I get it...I would like to see those stupid numbers go down just once...below 500 ..that would be cool. Still waiting for stupid insurance and CVS specialty to figure out how to get me my first dose of Xeloda so I'm sitting here having no treatment with growing cancer...not happy about the delay
I'm lucky to be old enough to be on Medicare, and I go through my onc's small pharmacy that gives me a break with the co-pay. Considering they make a bundle on me every month, why not. I hope you have insurance that covers this and/or can get a grant.
Nope $200/month is what they are saying. We are fortunate that this will be very manageable but I'm only 56 and hope to be around awhile so it will become taxing at some point.
They bill Medicare $15,000/month.
Hi Sandra thank you for the info this is what I was looking at. Anne
I’ll look into it too. Keep me posted 😍
Hi Allison. I was on Xeloda as part of a clinical trial back in 2004. They used it in combination with Taxotere for the second part of chemo after Adriamycin and Cytoxin. I had manageable side effects, and I didn't even have a port (have one now and love it). I missed two Sundays of work. The most noticeable side effects were loss of hair, fatigue, and fingernail/toenail changes, along with some mild neuropathy that went away. I hope and pray that Xeloda is a good treatment for you! I know it's worked really well for many others.
Thank you so much! Also thank you for being a "pioneer" and participating in the trial for a treatment that will hopefully keep a-lot of us around for awhile longer.
Xeloda
Xeloda next, why not fulvastrant with Palbo first? 
Xeloda
