Just wanted to share some good news - I got back blood lab results and, after just three 7-day rounds of Xeloda, my CA 15-3 marker dropped over 200 points! This is the first big drop since it starting creeping upward last fall, then really jumped in May, along with increased liver mets. I was given four treatment options and chose Xeloda, in large part because of all the good results and advice I read here. So thank you all for sharing your stories - I so appreciate the support, encouragement and honesty here. xoxoxo
Xeloda success story!: Just wanted to... - SHARE Metastatic ...
Xeloda success story!
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MacroMom
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I’m so happy for you!
That's the most wonderful news thank you for sharing💞
That's amazing news and so encouraging. Genuinely pleased for you and thanks for sharing x
So happy for you🎉🎉yay♥️♥️♥️
Lovely to hear your good news ! x
So happy for you!! Celebrate!!! Thanks for sharing!
So delighted for you x
So happy for you. Maybe I will ask for that after chemo.
Great news! May I know the other treatment options you were asked to choose from?
Hi Miracle!
I was on Letrozole alone for 15 months, no side effects and markers dropped a lot, then were stable or increased slowly for months. When they began to climb a lot I tried Faslodex/Ibrance for 2 rounds but my liver mets increased and marker went up over 500. (I'm glad it's worked so well for you and many others!) So the options were:
1. the just-approved Piqray (alpelisib) because I have the genetic mutation that it targets. However for now it is only approved for use with Faslodex and that didn't work well for me. I recently read that Piqray is now in trials combined with Letrozole, so I may try it down the line.
2. Aromasin + Afinitor. This combo apparently has a good track record with liver mets but I was really concerned about the side effects, especially the mouth sores.
3. Tamoxifen. I think I was offered this because my oncologist knows I like to do the least toxic/invasive treatment possible. But the track record of it working after Letrozole wasn't great, and I really wanted to get the liver mets under control.
4. Xeloda. Initially I thought this would be my last resort, as it is officially a "chemo". However the more I looked into it (and read positive reports here) the better it sounded. My oncologist studied it when she was at Sloane Kettering and likes the 7 days on/7 days off schedule, which seems to help with the hand/foot side effects. I like that it's been around a long time and side effects are well known, as are supplements that can help. (I take B6 to help with the hand/foot and so far haven't had issues with it.) I also like that it's oral so the dosage is very flexible, unlike some newer drugs. I don't weigh much and felt that 125 mg of Ibrance was way too much for me, but "that's what everybody starts on".
I was also offered the option of an immunotherapy clinical trial but felt like, at this point, I wanted to try something with more of a track record against my type of cancer. Very hopeful about immunotherapy in the future though.
I hope this helps. These "rock and a hard place" treatment decisions are so tough.
Can I ask your daily dosage of Xeloda?
Sure, I take 1300mg twice a day, 7 days on, 7 days off.
I’m also going to ask my onc next visit about his thoughts on 7 on 7 off vs current treatment of 14 on 7 off. My hands and feet still get pretty sore by about day 11. I am dialed in at 2450mg daily now. I started in January this year and it seams to be working-rumors have gotten smaller and the markers are going down still.
That's great Becky. Down is the direction we want the markers to go! I like how flexible the dosing is, with 500mg and 150mg pill options to combine. My onc studied the 7 days on/7 days off with another Dr. when she was at Sloane Kettering and they determined that it keeps the cancer more "off base" with the up and down swings, plus of course lessens side effects. I haven't had any foot soreness or dryness yet but they get HOT sometimes...had to take my shoes and socks off in a theater the other night!
I am so curious about how much you weigh. I, too, don't weigh much. I am tiny and am amazed that doctors ignore how small I am when they order the largest doses of these powerful drugs. I am afraid of Xeloda because of its possible side-effects. I have extremely sensitive skin, in fact, there is a medical name for it. My skin over-reacts to everything! I am also extremely disappointed in my doctor, whom on a personal level, I really like. I have been complaining about an eye problem and dizziness for months and months along with a severe balance problem. I am on exemestane. I just read on its information sheet yesterday "To call your doctor if you have "problems with vision, speech or balance." I have been telling him about this for months and months. He obviously doesn't have a clue about the serious side-effects of the medications he is prescribing, as I suspect many others don't either. I also have had all three polio viruses, spinal, lung and muscular. The spinal involved my spine and bulbar part of the brain. My central nervous system was viciously attacked by these three viruses. I I am one of the few people in the world that has survived all three viruses. It truly is a miracle that I am here. Five specialists told my parents to make my funeral arrangements and to go home and make another baby so they wouldn't miss me so much. I was five and am now 72. Chemo drugs do the same thing, as far as messing with the central nervous system. I realize that he is young as are many other doctors, but he just doesn't understand that he can't put me in a box with everyone else. I am also using Metformin on my own, which so far has gotten rid of skin cancer on my stomach (after a week) , and he, himself was surprised, when it appeared that one of my liver mets may be dying (after a month). I also wonder if anyone else out there is on Metformin.
I feel the same way about many drugs. It seems that many doctors prescribe the maximum tolerable dose when a lower dose might be as effective and have fewer side effects. But I think they feel their hands are tied by pharmaceutical protocols and hospital rules. One of the reasons I chose Xeloda over some newer drugs is that the dosing is based on body surface area. I have seen posts here from people on 1250 mg am/pm up to 2,000 mg am/pm. I weigh 131 lbs at 5'7", or about 59 kg. Xeloda come in 500mg and 150mg size pills, so perhaps you could start on even less. I also like Xeloda because it's oral, and if I had a bad reaction I could stop it immediately.
I would be concerned about your side effects on Extamestane too. Can you get a second opinion or speak to a PA or nurse? Sometimes they know more about the side effects than the oncologists!
If you search here for Metformin I think you'll find others who are on it.
You are a survivor for sure!
Thanks for outlining your thought process in deciding which treatment to choose. It’s a great example for all of us in thinking through our choices when we need to change treatments. And I’m so glad it was the right choice!
That’s great news. I’m a very big fan of xeloda. When I was diagnosed with liver mets last June I was put straight onto palbociclib. My mets increased from 7 to over 100. I was moved onto xeloda in November. I’ve had 3 scans since and LOTS of my mets have disappeared. 🙏🤞
I know of a lady who has been on it for 6 years. 🙏 when it works it can really kick cancer’s ass.
This is so encouraging! I've read or heard so many stories of liver mets increasing on palbociclib...or may it's the faslodex? I hope they are doing some studies. It seems to work very well in some cases, but not well at all in others. Keep imagining those mets melting away!
Heck ya!! I’ll take 6 years!! 🙏
Woohoo fantastic news. 💪
Wha are the side effects?
With Xeloda, the main side effect seems to be a hand/foot sydrome...the palms and soles get dry and cracked, and can be quite painful....like a bad sunburn. There is also some fatigue. Weirdly my only side effect so far has been related to sleep. It's a less common one, but I just stopped sleeping deeply, kept waking up every hour or so after a dream, then falling back to sleep. When I'm taking the Xeloda I now also take a CBD tincture with a little THC in it (we can buy those everywhere here in Oregon)...that's been helping. I take 1300mg of Xeloda twice a day, 7 days on, 7 days off. I think that the lower dose and schedule are helping prevent side effects too. Some people take as much as 2000 mg twice a day, and take it 14 days on, 7 days off. I also take 300mg of B6 supplement and I slather on Udderly Smooth cream (it has an ingredient called Urea that seems to be the key) morning and night. My feet have never been so pampered!
Love the Udderly Smooth lotion!! I too struggle to fall asleep while I’m on my Xeloda. Taking CBC gummies with lorazepam seems to help
I was up until 5 in the morning ...just started 3rd round of xeloda.....3rd day. Was not sleepy...that you..just remembered how it kept me up last cycle..my feet are red and one of them hurts. Showed it to the GP,couldnt get over how smooth it was..Haha. I just bought B lundstone socks ,padded on the bottom.its approved for diabetics....either way they feel great! A real difference from regular socks....worth a try.
Looking forward to good news,healing and well being.
Just did a PETCT.....working hard at positive thinking Always seem to meet someone there in the same boat who gives me encouragement and strength, setting a good example of faith and trust.....as so many here do. Thank you all.
For me, I feel wired for two hours when I take my morning dose. I go to bed as soon as I’ve taken my evening dose so sleep it off. I rarely experience fatigue.
My face is slightly spotty and itches sometimes. My hands and feet are dry but not painful. Apart from that no other side effects. I love xeloda.
Great news! Thanks for sharing your success and reasons for choosing this treatment.
Great news so happy for you xx
Thanks for sharing this good news! I hope you will get a very long time out of Xeloda! Let us know how you are doing as you move along with it.
Great news! So very happy for you. It's so reassuring and uplifting to hear when treatments work well.
Great news! So happy for you! Thank you for sharing!
Great news!
Great news! Celebrate! I wish you continued success with your treatment.
Great news! I am also on Xeloda, my 4th month of treatment. (Two weeks on, two weeks off meds). I was put on Xeloda after 15 months of Ibrance/Faslodex, which seemed to no longer be effective. I feel good, no problem with hands and feet yet, and I can only hope I have continued success with Xeloda. My tumor markers are declining, and my blood work looks good. Thank you for sharing - we love to hear good news on this site!
That's great news! I'm happy that my other blood work looks good too, especialy the liver enzymes. The only thing a little high is Bilirubin, but that seems to be a side effect of Xeloda too. I'm really happy that my WBC and neutrophils are back to normal after the Ibrance. Great that you got 15 months out of it!
When I see my oncologist today I'm going to ask her if they ever pair Xeloda with Letrozole. Since my cancer is highly estrogen sensitive, it seems odd not to be on some kind of estrogen blocker. I'll let you know what she says.
It's reassuring to hear that elevated bilirubin is a common side effect. I was concerned with my last labs. All my liver enzymes were good, but my bilirubin was slightly elevated for the first time since being diagnosed.
I am going to ask the same question of my oncologist about pairing Xeloda with some form of estrogen blocker. Makes sense.
Got an interesting response about Letrozole...my oncologist said that having highly estrogen sensitive cancer didn't necessarily mean a good response to an aromatase inhibitor, and since Letrozole had stopped working for last year me she didn't want to go back to it yet. She thinks we are on the right track with just Xeloda. But it will be interesting to hear what yours thinks about it.
As to bilirubin, she wants me to get it checked again in 2 weeks. This time I had the labs drawn the morning after I ended my week on Xeloda. Next time she wants me to wait a few days. It wasn't that high at 2.0, but she wants to be sure it doesn't go up a lot more, since I have liver mets. The other liver enzymes went down to normal though so I'm not worried. I also read that it's good to drink a lot of water to flush out toxins and lower bilirubin levels so I'll try that too.
About the elevated bilirubin...I just checked my labs during the two times when my cancer had progressed in my liver (first, after a 2-month break from Afinitor, second, when Ibrance stopped working). My bilirubin was .3 and .5. So, I'm concluding and hoping that mine and your elevated bilirubin is caused by the toxicity of Xeloda. Like your's, my liver enzymes are all in the normal range.
Also like you, my labs were done on the last day of my "on" week.
My estrogen score is the highest it can be at 8. But estrogen blockers don’t work for me. 😳 I believe it’s because I’m also PR-
It’s very frustrating because I’m also pre menopause.
That makes sense. What do you take for that combination? I was well post-menopausal when diagnosed so it surprised me that initially the estrogen blocker worked so well. Hormones can be so complicated.
That can’t give me anything to stop the estrogen.
I think only about 13% of bc is PR- and for that reason not much research has been done on why the ER blockers don’t work for some of us who are double negative in this respect.
It’s typical of me to be high ER+ but resistant to the blockers. 🤷♀️
It's me again. I am curious as to if anyone that is allergic to latex, has had a problem with Letrozole? When I was first diagnosed in 2009 and put on Letrozole, I had extreme stomach pain and was in agony. I called my oncologist the next day and she discovered that they put latex in it as a filler. Has anyone else had this issue? Thank you.
Good for you -I was on it for 3 years!!!
Wow , just wow...I'm sitting here in in Oregon getting teary this morning from the outpouring of well wishes and support. Thank you all so much! I realized when I got the news yesterday that I wanted to share it here, especially for others who are on or considering Xeloda. But I also had twinges of "good news guilt" with so many of us struggling. So thank you again for the affirmation....we are all on this roller coaster together, the ups and the downs and those blessed stretches of straight ahead.
Beautiful response!
It is wonderful news! Congratulations and always celebrate a new lease on your life! I and many others are happy for you! Keep up the good healing!
So glad to hear the good news. I hope it keeps working for you. I had pretty good luck on Xeloda but am having to change now. Be prepared for the issues with your hands and feet. It never stopped me from doing the things that i wanted to but it can be bothersome. Keep your feet and hands moisturized as much as possible. And sometimes I would soak my feet in warm water with epsom salt and lavendor oil.
Kim
Outstanding news! I love to hear good news! It helps us have hope as we share the good, the bad & the ugly with one another. I appreciate the authentic and open nature of all who are on this community. I told my Oncologist today how much this online support community has helped me and she said usually “those online communities are more negative.” I told her how this one is both positive, encouraging & people share what works & what doesn’t. I’m glad to be a part of this group who is happy for the successes of others and is kind & encouraging when we have sad or negative updates. Thank you!
Please tell me what "mets" stands for. I am new at this.
Sorry, short for metastases.
Thanks
Perfect question! Before you know it you will be talking stage 4 MBC acronyms like the rest of us 👍🏻. I remember thinking what the heck is an ONC? oncologist
😃😃😃
That’s amazing news! So happy for you ❤️
Happy to hear the good news!
So happy for you!!!!!
I'm just about to go on xeloda bit worried about side effects so thank you
glad it helped! There is a lot of other good Xeloda advice here, about dosing, schedule, and preventing/treating the common hand/foot syndrome. You've probably already searched all that out but if not I recommend checking it all out. I hope it works well and long for you!
I know this is an old post just had one round of xeloda this post gives me hope, thank you x
I hope it works well for you too! I saw your other post about nausea and some good suggestions about dose reductions. I think my side effects were less because of the lower dose and 7 days on/7 days off schedule. I hope you and your onc can find a good balance. Take care!
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