Like many of you in this amazing group, I too had a difficult week. It was time for my scan and I also had an ultrasound of my breast. After 9 months on Ibrance, Letrozole, and Xgeva, first line of treatment, the two tumors in my breast show a marked improvement and still no lymph node involvement. After that news, I was skeptical, but somewhat hopeful my scan would also reveal marked progress or stability. At the same time, I felt like something might be up. My tumor markers even though still in the normal range had been going up a tiny bit each month, increased pain and shortness of breath. Good thing I had someone with me, because I went numb and didn’t hear very accurately what my onc said after progression on my liver and lungs. Next steps will be genetic testing and liver biopsy. I think I am holding together only because so many of you have bravely shared your journeys of progression and treatment changes. You provide so much hope and encouragement to those of us beginning our journey. Thank you! My oncologist is recommending Xeloda alone as my next treatment pending any surprises with biopsy. 14 days on and 7 days off. For the next couple of weeks, I will enjoy no treatment and try to work on getting stronger to face an even bigger battle and try to learn the do’s and dont’s of Xeloda.
I was so hoping to be on this regimen for a very long time and that the dang mets would stay in my bones. Nothing like a good dose of reality.
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Thanks for sharing what's been going on. That must have been hard to do. This disease is not easy to deal with. It's good that you had someone with you to support you when you saw your oncologist. That is so important. It sounds like your oncologist has everything all lined up ready for you as you get ready to start your second line of treatment. Please try to be positive in the days leading up to the start of treatment. Were you given literature to read on xeloda and what to expect from it? Please let us know how you are getting on.
I hope your new treatment will prove successful for many years to come,
Thanks Sophie. I’m just feeling really disappointed I didn’t get more time out of the combination I was on. I’m letting myself take a couple of days to deal with it. I won’t wallow in this place for too long as I know it isn’t productive. I don’t have anything on Xeloda yet, but will do some research soon.
It's completely understandable to feel this way. I agree that it's a good idea to give yourself some time to process the news you have been given. It's like when we are first told that the disease is metastatic. It is not easy to come to terms with, but we somehow do.
I’m so sorry about your stress and the progression. I get my results Monday. I don’t know about liver Mets, but can they be ablated? Have heard of regression on chemo, so let’s go for that. I know what you mean about not hearing anything after you get news like that. It is amazing we get out of bed in the morning. Hoping the ladies with liver Mets can give you some insight. I have lung Mets fairly stable on Ibrance and faslodex. But that could change Monday. And if it does, I’m going to have a glass of wine, listen to music and figure out the next chapter. Sending hugs 💕
Thank you. I thought I responded already, but I’m new at this and maybe it didn’t post. I seldom have wine any more, but that is exactly what I had when I got home. It didn’t change anything, but at least I wasn’t in pain! I will keep you in my thoughts and prayers you get better news than me. May your glass of wine be celebratory!!
Oh no, that's not what we want to hear! But when this happens we need to regroup and start the next line of treatment, which is already known. I so hope Xeloda will prove to be very successful in getting you to stable again. We're hanging in there with you!!🙏
So sorry about that for you. I am right there with you. Starting xeloda soon. Have been off faslodex and ibrance/xygeva about a month after bad allergic reaction and mixed results. I feel sad and down about it right now. The change has me scared also. My doc is trying to get the mutation test approved so piqray is an option. But that hasn’t happened yet.
Here’s 🙏🏻🙏🏻🙏🏻🙏🏻 And hope for both of us going into new treatment♥️
So sorry to hear of your bad reaction. Must be very scary for you. Fingers crossed the medics get your tests sorted quick sharp so you can crack on with your next treatment whatever that may be. Keep your chin up. Sending lots of hugs and positive vibes your way. Take care. Josie xx
Gosh, you have had a rough ride Francesca, and yet you are always there for the rest of us. Wishing you speedy results and very positive results for the next treatment. Clare x
Hi Francesca, Thanks for your response. My doctor did mention piqray also. I’m assuming that the biopsy will indicate if that is an option for me. On the bright side at least Xeloda has been around for awhile and doctors seem to have confidence in what it can do. I am a little concerned about side effects and if the hands and feet issues go away when you stop taking it. I will keep you in my thoughts and prayers that Xeloda works for you. Keep in touch.
So sorry to hear this. This is precisely why we all have scanxiety isnt it. I can well imagine your feelings around wanting to be on the first line treatment for longer but remember, its only first line due to averages. Different things work better for some people and you never know, Xeloda might be loads better for you. I have liver mets along with lung, chest wall, chest and neck lymph nodes and 3 spine mets. Only v small in my liver and Im only 4 months into this roller coaster of a journey so no real pearls of wisdom to pass on but just know we're all here crossing our fingers and toes for you. And it's ok not to be ok sometimes. We all have our down times when 'the fear' takes over so take time to allow yourself the emotional outlet then take a deep breath and let battle commence. Very best of luck to you and sending lots of pisitive vibes and hugs.
Ohhh. What a week! I wish your news was better but I'm another walking right with you. I didnt take in much after seeing me all lit up on the screen. My husband went into the fog as well. But bye-bye Faslodex after only 8 months. Hello xeloda, radiation therapy, and trip to orthopedic surgeon. My info on xeloda came from chemocare.com listed as Capecitabine. I have an image of 'Stands with Fist' from Dances with Wolves!
Anna, Thank you for your support and sharing the link. Sorry you are in the same boat with me. I hope Xeloda heals us both! What can we do, but fight on!
I have been on xeloda for a little over a year. It is the first drug I was put on. I have done well on it. I have mets to the lungs and liver. I have never had the hand foot syndrome they watch for but have had some issues with my gut. Diarrhea if I eat too much. But it is controllable if I watch what I eat. Overall, it has been good.
Thank you so much for taking the time to respond and for sharing your journey with Xeloda!! It is so scary to have progression and change treatment. Hearing from someone on that path doing well offers lots of hope. What dose are you on? Do you put any special cream you use on your hands and feet? Any special diet or just don’t over eat? Do you take supplements?
Yes, they suggest "Udderly Smooth Body Cream" at the cancer centre I go to in Ontario, but I have not been very diligent and have had no problems yet. I had real GI issues in the winter and it all settled down. I find if I do not overeat then I am fine but if I do overeat I get a lot of gas and diarrhea. I have taken some naturopathic supplements here and there but never really have understood whether they help. I am sort of afraid to take them as the pharmacists at the cancer centre do not like them; however, I do not think they understand what they do at all and they are so afraid they will interact in a negative way with the Xeloda. I do know that the granules the naturopath gave me for my cough did nothing at all.
They did decrease my dosage of Xeloda in the winter after the GI issues. I believe I started at 3000 mg per day and now take 2600 mg per day. I am just finished my week off and I go to the cancer centre tomorrow and she will prescribe more. I have to go there every 3 weeks. How often do you go?
I am in a clinical trial with Xeloda. At first it was a bit rough-digestive issues and some hand foot syndrome. I’m on my 7th cycle and have had a 75 % shrinkage in tumors Fatigue lis the only lingering issue.
I think Xeloda alone is very effective but the national trial is called Contessa. I’m in it at Dana Farber in Boston.
Strength, healing and joy to you. I think we need all three every day. Spa space
Hi Becky, Thank you very much for sharing your experience taking Xeloda. 75 percent improvement is very encouraging. Good for you! I hope you get to NED!! The trial mentioned to me, I was not eligible for as you had to have already taken a chemo drug (Ibrance doesn’t count!!). I think they were comparing Xeloda with a new drug that was in Phase 3 and getting ready to go to market. Patients wouldn’t know which drug they were taking. Hopefully there is an alternative with less side effects on the market soon!!!!
Just wanted to say. I am sorry for your mets progression. I think you will do well on Xeloda. I think that will def be my next port of call. Will be very interested to hear how it goes. I am on IV chemo. I have been on it nine weeks and MRI and CT scans show my tumours (lungs, liver and spine) are all shrinking. I wish I had been offered Xeloda as it doesn't tie you to one place like IV chemo. Don't get too down. There are lots of things that we can all try x
I am so sorry for your news but hopefully this new treatment will work for you. I, too, had a traumatizing week when I realized that I have an ESR1 mutation that makes AI's not work - and all the literature is shouting poor prognosis - I need find a study they are doing that they are fast-tracking so made me feel like they are at least trying. Going to a movie and out to dinner with friends tonight to try ad get out of my slump. Just when I am feeling hopeful - I get slammed down again!
I am so sorry you didn't get the news we all hope for and hope and pray you get great results from Xeloda. I have heard good things about it. Blessings, Hannah
I’m afraid I don’t have any experience with Xeloda. My Onc told me it is quite normal for the Letrozole and Ibrance to stop working after 8-9 months, as the cancer works a way around it. So they are prepared for this, and ready with the next treatment. Still not good for you. Must have been like hearing that bad news all over again.
All the lovely ladies on here will enthuse you with their similar stories.
Thank you for your reply, Sandra. Now that I am over the initial shock, I am feeling hopeful that Xeloda will work for me. It does feel good to take a break from the pills!
I'm sorry for your situation. But it's your situation, it's not YOU! You'll get through this just as many of us have. Med changes, routines changed, the only constant is change. So many good and newer treatments that can tackle this. All the best to you!
Thanks for the encouragement Lynn! Very true about change. I found myself trying to figure out what I did wrong. I didn’t eat healthy enough, I should have had more green juices, supplements, exercised more, rested more, I could go on and on.
You're right. It's so easy to try and second guess ourselves. I went through some of that when I was initially diagnosed 7+ years ago at Stage IV. I think so much of this is genetic and perhaps environmental.
I'm happy to read all the lovely support coming at you! I'm one of the "Xeloda gals". I feel like that's all I write about here lately so excuse me if you've read this before on another post, but I thought I'd share again. I'm a little more than two months into Xeloda and so far so good. I have extensive bone mets plus liver mets that grew in number and size after just two months on Ibrance/Faslodex. I take 1350mg of Xeloda am/pm, 7 days on, 7 days off. (This is a protocol studied at Sloane Kettering, where my oncologist happened to be in residency...I think the standard is 14 days on/7 days off.) I had some minor queasiness and fatigue the first few days of the first two weeks, but since then really nothing. I am religious about using "Udderly Smooth" on my hands and feet each morning and night and so far no sign of hand/foot syndrome either. If you use this cream be sure to get the "Extra Care 20" version because it contains Urea which seems to be the magic ingredient. My CA 15-3 shot up to 578 on Ibrance but dropped to 254 after two months of Xeloda. I'm shooting for under 100 next month! My Naturopathic oncologist likes Xeloda because it's been around for 20 years and they know what supplements help. I take curcumin and B6 specifically to help with Xeloda side effects. I never expected to be happy about being on chemo but so far I have to say I am. May you have the same good results! I'm glad you are getting genetic testing done too.
Thank you so much for sharing your experience and tips about Xeloda. It does help reduce my anxiety about taking it. I am happy it is working for you and I hope it continues for a long time.
Sorry to hear the spreading news. Sounds like you hit the low, emotionally, and are ready for the next steps. We understand the roller coaster- it's all crazy. Keep at it...
I’m very sorry it was a tough week. Glad you shared it with us. It is good to hear about the MBC journey & the ups & downs we all experience. It helps me relate to everyone on this support community when we share authentically. Praying for positive results & a better week for you! This is a marathon chronic disease. ❤️🙏❤️
Thank you for your response. I think you express yourself beautifully and would encourage you to find your voice. This is a supportive, nonjudgmental and safe place to share your story and give and receive support. When you are ready, maybe take a few small steps, such as updating your profile or posting to introduce yourself to the group and maybe sharing where you are in your journey. Maybe you have a question you would love to have answered by someone actually going through what you are. Ask away! We are all on a very difficult path. Sometimes just putting our feelings, struggles, hopes and fears out there helps.
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