My most recent scans showed progression. Neither of my oncologists are optimistic. I've exhausted all the IV chemotherapies. Oh, and I'm stage IV TNBC and have been for 11 years. It's been a long road. I thought I'd post to get some feedback.
I've chosen not to do Piqray because of side effects. The other option is Xeloda. I'm not sure how much time that will buy me. My quality of life has truly gone down in the last few months. I don't want it to disintegrate even more from adding in a new chemotherapy.
I've signed up for Hospice, although death is not imminent but because of the great support and services. But, if I go on Xeloda I will have to step back from hospice since you can't be on any kind of treatment. I would be able to go back on after I'm done with Xeloda.
I'm not sure I want to suffer side effects from yet another chemotherapy and I wonder how much benefit I will get QOL/side effects/extra time. I've not been given a prognosis and I haven't asked for one either. That kind of messes with my head.
Some of you have had success with Xeloda. I'm starting from a place of weakness and just am not sure. I've had more than 7 lines of IV treatments.
I appreciate your feedback and input.
Thank you and many blessings,
Lynn
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lynnhbtb
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I have nothing to add about Xeloda but echo Guest111’s comment to try it. I’m so sorry you are at this stage and send you big hugs and hope for the very best outcome with your decision. 🙏🏻🥰
Try Xeloda, it was my second line and I had no evident side effects. Piqray too isn’t so hard on everybody… I would consider these new lines and maybe new trials…
I have good things to say about Xeloda, it took a little trial and error to find my correct dosage. Like you, quality of life is very important to me, I told my team when I knew my dosage was too high and we adjusted accordingly. I’m on the lowest dosage and have very minimal peeling skin on my feet and hands. Occasionally I will feel nauseous. My latest scans show the first shrinkage of tumors in my liver and bones in over two years. I can honestly say I like Xeloda and will continue as long as I can.
there are people on this forum who have far more experience and wisdom to offer re Xeloda piqray etc. I can only wish you (all) love, a virtual hug, courage and strength and a hope that a game changer trial comes up for you.
I just started xeloda 2 wks ago and while I hate the side effects (currently on highest dose), it’s already shrunk the newest mass considerably. I’m on 4th line now…
Also, this nurse had TNBC and used a combo of chemo + fenben, did very well…check out the vid
Care Oncology uses a protocol of 4 off label prescriptions combined with your current labeled drugs. Fenbendazole is similar to Mebendazole which is one of the off label drugs Care Oncology uses. If interested a search for Care Oncology should get you to the right place.
I would echo what the other ladies have said about Xeloda/capecitabine being worth a try. I started it in July and after a 10% dose reduction am feeling really well- just some mild hand and foot on my fingertips and some insomnia, which I manage OK. I would love to stay on it for a long time.
You have done well for 11 years, you have got this.
Lynn, I have no experience w Xeloda myself but have seen some friends thrive on it. I hope you choose to give it a try. We are here for you. I’m glad you reached out.
I have been on xeloda for 4 months now. Within this time multiple growths shrunk and several went away completely. Other than fatigue, the side effects have been manageable. And the fatigue is only the last days of the cycle.
I had been very scared of the side effects and didn’t want to go on it but finally gave in after my onc pushing it for months. I wish I had started it when he wanted!
I hope you’ll give it a try . And most of all I hope it works for you
yes, I think Xeloda should work great for you. I'll try anything to see if the side effects are there for ME as we are all as different inside as our fingerprints are on the outside, as to how different drugs effect us that is. I take Ibrance and Letrozole with no side-effects other than a bit of tiredness but honestly, I think I'd have that anyway as I approach 70. Thing is, whatever you choose, have faith that it will work for you. The bible says do what you know to do then STAND and watch God do the rest (Eph. 6:13-14). I just rec'd a "Jesus calling" the other day that I will post here as it was beautiful and right on time for me, hopefully it will help you too! Read Romans 10:9 <3 Here it is!
~JESUS CALLING~MY FACE IS SHINING UPON YOU, beaming out Peace that transcends understanding. You are surrounded by a sea of problems, but you are face to Face with Me, your Peace. As long as you focus on Me, you are safe. If you gaze too long at the myriad of problems around you, you will sink under the weight of your burdens. When you start to sink, simply call out, “Help me, Jesus!” and I will lift you up.
The closer you live to Me, the safer you are. Circumstances around you are undulating, and there are treacherous-looking waves in the distance. Fix your eyes on Me, the One who never changes. By the time those waves reach you, they will have shrunk to proportions of My design. I am always beside you, helping you face today’s waves. The future is a phantom, seeking to spook you. Laugh at the future! Stay close to Me.
Philippians 4:7
7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Matthews 14:30
30 But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!”
Hebrews 12:2
2 fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.
I also don’t have any advice to offer on xoleda but I want to encourage you to give it a try as it sounds like many of the ladies who responded are having success.
I realize we all react differently to different medications, and you can pull back if it’s too much of a toll on your quality of life…but what if it isn’t 😏. Imagine that 🥹
11 years! You are an inspiration to all of us. Please keep us posted.
Hi Lynn, I’m not even a month in to starting xeloda. My onc recommended it when we finally found the lobular spread throughout my abdomen. Anyway, I went from daily pickle ball to blistered feet when I started..if you just slow down and cream your feet from the start snd take a moderate not high dose, I think you can get through therapy.with out too much dip in QOL.. And can perhaps stay on xeloda to help manage side effects from worsening .. which they do allow.
11 years Wow what an accomplishment. We’re you TNBC for all of it? How old are you? Don’t give up. They have made some major advancements recently with Trodelvy and Enhertu have you been on both?Xeloda works just varies for everyone on how long.
hi Lynn, like others encourage you to give Xeloda a try! I’ve been on it 5 weeks and so far, so good. Only slight foot pain which was fixed through dose adjustment, otherwise I feel normal (and actually more energetic than when I was on Ibrance / Verzenio & Fulvestrant). The other great thing is that it’s in pill form, and doesn’t affect hair growth, so feels less like a chemo experience. Wishing you strength 💜🙏🏼
Please try both xeloda and piqray. I have done both. Xeloda worked for 23 months for me dry hands and feet but manageable a little tired. I’ve been on piqray for 24 months just stopped working as well. Side effects a little more tired no blisters on hands or feet. Was easier than xeloda for me. Don’t give up r email strong and positive! Both had to taken with Falsodex shots every 28 days. Those were the worse for me, but only sore for a couple days from injection! Good luck…
I have been on Zeloda for almost 2 years and have done very well until this month. My PET scan showed some activity, therefor I have to go on an IV chemo. Presently, I am having an appt at Dana Farber, to see if they have a trial for me. Because I am 80 yo, my doctor here would like me to see about getting a chemo that would be easier on me than the only one she can offer me presently at Upstate, Syracuse. As far as Zeloda goes, I had NO PROBLEM WITH IT! Some diarrhea once in a while, was the only thing. No problem. If I were you, I would go for it! I wish I could continue on it, but no such luck! God lukand God bless! Kathy. From Syracuse, NY
Hi Lynn! I am 10 years now with met to my liver and pleural cavity. I am on my third round of Xeloda — - 2000 mg twice day for 14 days on then 1 week off. Side effects include nausea, thinning nails and hair, some stomach issues (ugh!) and the worse side effect has been FATIGUE. I mean like stay in bed fatigue. But I am learning how to over come it- - move more. So happy my blood counts have improved. Waiting on results on my tumor markers. Xeloda as a chemo was at first scary but it is not as horrific as I thought. So, try and stay ahead of known side effects. God Bless You!
As others have indicated, I, too, am very impressed with your 11-year history with the toughest type of MBC. You clearly are a fighter with a well-functioning immune system that you have protected from treatment fallout. Congratulations!!
I have no advice. I imagine you've checked out the research. I noticed that there are references to "Xeloda success stories" on the Internet so perhaps those might help in your decision??
Xeloda worked well for me. My only side effect was the hand and foot syndrome. If your dose isn't too high, you should get some mileage out of it. Except for my letrozole in the beginning, I liked the Xeloda the best.
Give it a try. My lowered dose was 500mg in the AM and 1000mg in the PM.
xeloda is normally given as an earlier line of treatment I have not seen any data on very late lines. It can be given as a metronomic dose, low dose every day, this will lessen considerably side effects. The only significant side effect that everyone gets within a few months is hand snd feet syndrome swelling redness of hands and feet, which can impair functionality. It gave me neuropathy as well. Ask your doctor about metronomic dosing if it makes sense this late in treatment. Given that nothing else is available this is the moment to try alternative remedies… Good luck!
there is a Facebook group for women on Xeloda and a recent thread was all about positive stories. One woman had been on it for 9!years! This was an exception , but many women are on it for a long time. I’m not sure how your previous treatments will impact your results but it can’t hurt to try!
I personally have been on it just over a year. The hand foot stuff is irritating but manageable. I had a bit stomach issues my last cycle, but has my dosage increased and travelled to Mumbai so it could have been due to that.
If you decide you want to try Xeloda- if it were me l would try the lowest possible dose and decide if it's worth it. Also it's worth remembering that too many people wait too long too opt for hospice and they barely have time to take advantage of what is offered.This is an extremely hard decision l wish and pray for you to have peace and time needed for you to know what your body, mind, heart and spirit want and need at this time. 🌺
Try the xeloda. It didn’t work so long for me but it was pretty manageable. The worst was the blisters of my hands and feet but you can stay ahead of that with urea cream. I used 20% by udderly smooth. Sending you positive thoughts.
I just wanted to share my experience. I too have had many treatments I am er/pr+ with Her2 neg (low) I just went on xeloda in may of 2022 after ibrance and fasoldex stopped working and I stopped xeloda in Dec because it did nothing and I too progressed. My tm's increased every month to 460's. I am now on vinorelbine and I started with 90 mgs 3 pills in Dec. one cysle 1st and 8th day. It is chemo, but in pills. My doc increased to 120 and after a bit of nausea the day of, I am feeling better and the pain has seemed to subside in my bones. I do also take rso oil as a suppository and that helps too. Hope my experience helps. Hang in there. Take a look at cannabis health radio too.
I was on Xeloda for almost 2 years and it worked well for me. I was blessed that my onc put me on the metronomic dosing of just 1500mg a day no rest period. I did not have any of the dreaded side effects probably because of the low dose. Please just try the Xeloda.
I was late stage 3 TNBC with no response at all from any combination of chemo. Post surgery and radiation I completed a year of Xeloda - tolerable, but tough side effects. My only other option after that was Keytruda, a treatment for lung cancer approved in the last two years for treatment of TNBC, if all other treatments have been exhausted. 1 Year later and no signs of spread. I don't know if it was the Xeloda or Keytruda, but don't give up. Wishing you every bit of love and luck.
Thanks for your response. I’m late stage 4,many organs involved. I’ve been on keytruda and at least 6 types of chemotherapy. I believe there’s a low chance of xeloda working for me and I’m not sure I want put up with the side effects you talk about and add them to my maladies. But I do appreciate your thoughtful response. Lynn
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Xeloda 
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starting Xeloda (capecitabine)
