Xeloda success story!: Just wanted to... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer
2,715 members2,325 posts

Xeloda success story!

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

56 Replies
oldestnewest

I’m so happy for you!

1 like
Reply

That's the most wonderful news thank you for sharing💞

1 like
Reply

Fabulous news! I'm so happy for you and that really bodes well for your next scan. Thanks for sharing your wonderful inspiring news with us.

Sandra

2 likes
Reply

That's amazing news and so encouraging. Genuinely pleased for you and thanks for sharing x

1 like
Reply

So happy for you🎉🎉yay♥️♥️♥️

2 likes
Reply

Lovely to hear your good news ! x

1 like
Reply

So happy for you!! Celebrate!!! Thanks for sharing!

1 like
Reply

So delighted for you x

1 like
Reply

So happy for you. Maybe I will ask for that after chemo.

1 like
Reply

Great news! May I know the other treatment options you were asked to choose from?

1 like
Reply

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.

1 like
Reply

Thank you for posting this, it’s really helpful 🙂

1 like
Reply

Can I ask your daily dosage of Xeloda?

1 like
Reply

Sure, I take 1300mg twice a day, 7 days on, 7 days off.

Reply

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.

1 like
Reply

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!

Reply

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!

1 like
Reply

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.

6 likes
Reply

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!

1 like
Reply

Heck ya!! I’ll take 6 years!! 🙏

1 like
Reply

Woohoo fantastic news. 💪

1 like
Reply

Wha are the side effects?

1 like
Reply

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!

Reply

Thank you

Reply

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

1 like
Reply

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.

1 like
Reply

So many positive reports about Xeloda! Just looked it up and it's been around since 1998. Like me...well-aged! :-)

Reply

Great news! Thanks for sharing your success and reasons for choosing this treatment.

2 likes
Reply

Great news so happy for you xx

2 likes
Reply

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.

2 likes
Reply

Great news! So very happy for you. It's so reassuring and uplifting to hear when treatments work well.

2 likes
Reply

Great news! So happy for you! Thank you for sharing!

2 likes
Reply

Great news!

2 likes
Reply

Great news! Celebrate! I wish you continued success with your treatment.

2 likes
Reply

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!

3 likes
Reply

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.

Reply

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.

1 like
Reply

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.

Reply

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.

Reply

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.

Reply

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.

Reply

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. 🤷‍♀️

Reply

Good for you -I was on it for 3 years!!!

2 likes
Reply

3 years - that's great! I hope you get good results with Ibrance for that long!

Reply

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.

2 likes
Reply

Beautiful response!

1 like
Reply

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

2 likes
Reply

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!

3 likes
Reply

Please tell me what "mets" stands for. I am new at this.

Reply

Sorry, short for metastases.

Reply

Thanks

Reply

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

1 like
Reply

😃😃😃

Reply

That’s amazing news! So happy for you ❤️

1 like
Reply

Happy to hear the good news!

1 like
Reply

So happy for you!!!!!

Reply

You may also like...