I have so appreciated the information everyone shares as it has helped me so much! Not to mention the positive thoughts and prayers. 🙏 It’s been a while since I’ve posted.
This month marks 26 years since I was first diagnosed with breast cancer at the age of 33. I had 2 local/regional recurrences and lung cancer and was approaching 10 years cancer free when I was diagnosed with metastatic breast cancer in February 2019 to the brachial plexus, nodes and bone. Since then I was on Ibrance/Pablociclib and Fulvestrant/Fasoldex then a short try with Piqray/Alpelesib (I developed the rash 3x so didn’t even make it through my first month). I was on Afinitor/Everolimus and Letrozole/Femara for 6 months. I developed pneumonitis and had blood in my sputum when I coughed so now after a two month break and radiation therapy I will be moving on to Xeloda next week if my labs are good.
Any advice on Xeloda is greatly appreciated.
Thank you,
Esther
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Sparky95
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Hi, I am curious whereto are being treated and why xeloda as opposed to xgeva? I do know the first is cheaper and is normally the first line of treatment for bones and xgeva is ridiculously expense to get covered. But, it is a shot. I did not go on xeloda because it is in the bisophosophate family which I did not do well with. Are you on taxol at this point?
Esther, that’s so awesome you’ve made it 26 years. I also just started Xeloda. I know people say stay away from folic acid and make sure you use a product for your hands and feet. I’m using Udderly. I believe I got the wrong one, but I’m going to use it up first. It’s supposed to be the one with the pink label, not red. Also, try to stay hydrated.
Thank you so much for the advice. I’m so glad to hear how well it is working foe you. It gives me hope. I will look for the right Udderly and try to improve my hydration. I pray your journey continues to be positive. What dose and how often you take Xeloda?
Thank you for your reply. I’m sending positive thoughts and prayers your way! ♥️🙏♥️🙏
I am on my 5th cycle of Xeloda and am thrilled with the results! My tumor markers droppedfrom 1230 to 148! I also first started with Ibrance and Faslodex that was easy to be on, but it worked only about a year and 3 months. Then went on Afinitor which was too difficult to maintain (cramping, diarrhea, etc), even though I tried lowering the dosages. Xeloda has been amazing with few side effects (on a week, off a week, and just experience fatigue sometimes). The hand and foot syndrome I’ve not experienced because I also use Udderly Cream (original formula with red label…don’t know about pink label other person spoke about)…and place on my feet at night and then wear socks to sleep in. I hope you have a good experience with Xeloda, and I pray for you many years on this as well! I also get Xgeva shots monthly.
0h, some background…diagnosed in 2007 with Stage 3 breast cancer…mastectomy and radiation and 13 years cancer free. Dec/2019 returned in lining of stomach and bones as Stage 4. I’m 63 and travel frequently, and am enjoying life immensely! Feel God has blessed me with supportive family and friends! Good luck to you! 🙏🏻🙏🏻🙏🏻😍
I’m so happy for you that Xeloda is working so well for you. My cancer has never shown on the tumor markers which has made it harder to tell if the treatments are working. I end up having PET/CT scans every 3 months for restating. It’s heart warming to hear you are already a positive outlier from your cancer in 2007. I’m praying you’ll continue to be a positive outlier. What dose of Xeloda are you on?
I too like to travel and enjoy life to the fullest. I am so glad we are finally getting to travel again after months of restrictions due to Covid. We had plans to do an Alaska cruise with friends in 2020 and 2021. We will try again for 2022. I would still like to see other parts of the world and have to figure out how to do that while battling this cancer. 🙂
I’m so glad you have a supportive family and friends. I know that makes a tremendous difference. I remember praying to God to let me see my boys grow up and now I’m praying to see my 7 grandkids grow up. They bring me lots of joy and laughter so I try to see them when I can. I believe laughter is good medicine. ♥️
Thank you for your reply. I’m sending positive thoughts and prayers your way! ♥️🙏♥️🙏
I’m also very pleased to hear your tumor markers have dropped so much. Haven’t had mine tested yet. I’ve only been on it a week. The pink label Udderly has 20% urea in it that people recommend. I think that’s the difference, but my feet have never felt so soft. Lol. I’m also on a 7/7 dose. My mets are in all bone, bone marrow, and stomach as well. Not too many of us with it in our stomach. I’m on 3,000 mg per day.
Mine was lobular breast cancer in 2007…13 years cancer free, and returned as stage 4 in Dec/2919. It is actually in the periotoneum (lining of abdominal canal and lining of stomach…not inside stomach)…is that yours?!
Thanks for explaining the Udderly cream with pink label having 20% with urea…have heard that is good to use! ✅
Mine is actually in the stomach, but we can’t tell where else because it doesn’t show on imaging for organs and such. Bone and bone marrow mets only show on MRI.
I just started Capecitabine in July. I am a avid walker/hiker and I have discovered keeping my feet dry and in boots with lots of toe room is important. I bought an expensive pair of hiking boots this spring but can no longer wear them do to the narrow toe area. I have also noticed my hands are more sensitive to temperature especially cold and my fingerprints are gone.
I drop things more frequently and have less control of my hands when knitting, but this is just how it is now.
I have yet to find a good hand and foot cream. Udderly is not a product available in my area.
Please, keep us updated on how you are doing with this drug. Stay safe and well.
I’m so glad to hear you are able keep hiking and knitting by mitigating what you can and accepting limitations. With the advice I’m gathering I plan to mitigate the side effects to the best of my ability and continue to do what I can. I went on a bike ride yesterday and has really swollen ankles last night.
I think that’s been one of my frustrations with having MBC. If I go to my primary care provider they always want the oncologist to rule out that what I’m dealing with isn’t cancer related.
The pharmacist who reviewed the side effects of Xeloda with me told me to look for “greasy” creams and recommended ones used for baby diaper rashes.
How many weeks are you on on the Xeloda. They are staring me on 2000mg twice a day with a week on and a week off.
Thank you for replying. Sending positive thoughts and prayers. 🙏♥️🙏♥️
Except for the hand and foot syndrome Xeloda had treated me the best. H&F started at 6 weeks. I used Bag Balm. After 9 months, it hurt to walk so the doc DC'ed the drug. My dosage was 1000 mg in the morning and 500mg in the evening with 1 week on then 1 week off.
I am now on Piqray having a lot of the side effects. I wish I was still on Xeloda.
I am on 3,000 mg a day of Xeloda (three 500 mg in the morning after breakfast, and three 500 mg in the evening after dinner to get specific). Important to take after a meal because of the way it works I read. I also get Petscans every three months to confirm “hyper metabolic activity is diminishing” (or lights out is how they put it at the center)! I started two weeks on Xeloda, and then a week off, but quickly changed to a week on and a week off due to my kidneys creatin level going up. Now it has leveled off. My cancer was lobular breast cancer in 2007. When it returned as Stage 4 in Dec/2019, it was in the periotoneum (lining of abdominal canal) and mets to bones. Any others questions, feel free to ask me! I also hope to do an Alaskan cruise in 2022! Maybe we’ll meet then?! 👏🏻🎉🙏🏻👍🏻😍
I so appreciate the advice. They said they will start me on 2000mg in the morning and 2000 mg in the evening. Knowing I need to really take it with food is valuable.
I really like the idea of “lights out” on the PET/CT scan. That’s a great way of looking at what we want to achieve. Did the peritoneum light up on your scans? My oncologist keeps saying my cancer is hard to see, I tend to have symptoms first and then 3 months later it will show on the scan.
I do hope we both can make an Alaska cruise in 2022. Maybe we will meet then. 🙂
Sending positive thoughts and prayers your way. 🙏♥️🤗♥️
Very similar to what others are saying. Xeloda is my 4th line of treatment in 2 years. Did ibrance/faslodex for 11 months (NED for 8 then progression), piqray (disaster side effects), gemzar (progression) and now Xeloda since July. Started out bad, was on 14/7 protocol 4000 mg day. Ended up in hospital. Switched to 7/7 3000 mg and have been doing great. No h/f syndrome, only a minor rash. Recent pet scan showed a lot less cancer activity (bones, liver, thyroid). I'm really happy with xeloda and pray it continues to work for me. I'm strict about dosage timing (every 12 hours)after eating at least 300 calories. Good luck!
This will be my 4th line of treatment as well. I’m so glad to hear it’s been working for you. Sorry to hear it was a rough start to begin with. I hadn’t really thought about spacing the doses 12 hours apart which makes so much sense.
I’ll be joining you in prayers and positive thoughts that it continues to work for you. 🙏♥️🤗
YES, I AM!! Sorry lots going on here with planing a huge upscale wedding fo ray gouges daughter--not to say the stuff we all go through!! I a lucky I remember my own name.
Thank you for taking time to reply while preparing for your daughter’s wedding. I hope it is a wonderful celebration 🎊 🍾 that you are able to enjoy and treasure. ♥️🤗
I was just wondering how your Brachial Plexus area has been treated? After 13 years from my original diagnosis, my cancer came back almost 7 years ago in my Radial Plexus. I went through chemo again which shrunk tumor and then tamoxifen kept me stable for about 4 years but now on Ibrance and Femara. So far I’m doing well but I wonder if radiation could work without causing more nerve damage to my hand and arm.
We treated the brachial plexus tumor with 5 IMRT radiation then I started on Ibrance and Fasoldex. The radiation therapy helped me regain movement that I had lost in my arm and hand. It wasn’t enough to completely get rid of the tumor but it did successfully allow me to regain and restore function to my arm.
I hope they are able to help your radial plexus. Sending you a virtual hug.
Thank you for replying! I haven’t found anyone who has tumor in radial plexus. My local oncologist feels it’s best to keep treating it systemically but I also go to MD Anderson so I am going to set up an appointment with a radiation oncologist there who sounds brilliant and see what he thinks. I would love to have improvement in my hand. I manage to do everything but don’t have much of a grip and the numbness is very annoying but I’ve learned to live with it.
Hi Sparky95, checking up on messages from people that have been taking xeloda. How are you doing? I am about to start my 5th cycle. Just would like to know if you are still on it and how well it worked. Thank you in advance for your reply.
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