All about Xeloda
Comments
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Thanks for posting this Wendy. I read the article and it does indeed suggest that with lower stage ER+, Xeloda doesn't particularly do much (in adjuvant setting). That fits with what I had read at the time the dr had wanted me to take it. It also fits with the comments I've read from other lesser stage people here who said they "begged" their doctors for Xeloda, but they wouldn't prescribe it, because of it's extremely limited benefit for ER+. It probably didn't hurt me to decline it at the time I did, but if my oncologist offers it again, maybe I should think again this time. The sad thing for me though, was to see that only 25-30% of people with advanced breast cancer responded. That's not a great number in my book, but as I'm learning all this stage 4 stuff seems to be, I guess it is something for some, and better than nothing.
Very interesting to see that a drug can be more or less effective depending on the stage of the cancer. I had never heard of or considered that concept before. A very on point article regarding the question I had. Thanks again.
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Threetree- I am ER+ and Xeloda saved my life and worked better for me than any other treatment for MBC- when I started it my bone marrow was filled with cancer after I stopped Afinitor due to a progression (I also had a virus- not sure if that was part of it). I had severe anemia and many abnormal cells, my TM were sky high- I needed a. blood transfusion every 4 days for 8 weeks as the Xeloda cleared my bone marrow of cancer. My TMs got lower than any other treatment I had had and worked for 2.5 years. My bone lesions cleared completely. It was also far easier than AC-T and my labs were always fine (unlike with Ibrance)
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nkb, this is what’s really strange. My bone marrow is being taken over by the cancer and has been since 2013, yet I’ve never had to have a transfusion. I’ve had anemia the whole time, but my hemoglobin has never gone below 9, and right now I think it’s in the 11 to 12 range. I’m at a loss because nothing has helped my bone and bone marrow mets. I’m still full of cancer there. My stomach seems to be better since it’s now only showing in one spot. I never knew cancer could be so strange in how it affects people. I’m sorry you had to have transfusions, and I’m so glad Xeloda helped. I will be able to go back on Xeloda if Faslodex starts to fail, but I may try a different treatment first.
I have had a Foundation One test, but it was a waste of time. It did not have enough to tell me if I have an ESR1 mutation. I plan to be tested again.
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Wow Nkb, that's quite a positive story you have about Xeloda. Thanks for posting it. It really is starting to amaze me how these drugs can work so differently in different settings; with different people's (and cancer's) genetics, different stages, and different drug combos, etc. Glad to hear it wasn't as bad as AC+T too. All of these comments are helping me a lot with understanding why so many ER+'s who are stage 4 are taking Xeloda.
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KBL- my hemoglobin got to 5.8 or lower (felt half dead) I made tons of new cells, but, the cancer kept chewing them up until I got enough Xeloda in. My bone mets are "indolent" so makes me think that regular chemo won't work.
Threetree- it is really such a crapshoot! You never know if it will work- many chemos only work in 15% of people- hence the cycling through one after another- other drugs work in 40% of people. Some of the Her2+ drugs work even better- drugs often don't work in "heavily pre-treated patients" It's odd, I just saw a study that said Neratinib wouldn't work in a person with a certain mutation- yet, Shetland pony had that mutation and it worked for 1.5 years.
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Dang. I get the generic Xeloda through CVS Caremark and my co pay alone is $200 for a month supply. Health costs in the US suck. I'm praying CMS starts negotiating price with these greedy pharma folks. I'm lucky I can do the $200 a month. But I do debate what will happen when the drug costs exceed my budget.
Otherwise my onc just dose reduced me to 2000 mg a day and moved me to 7 days on 7 days off. Even now my hands are feeling it and I've got tender spots in my mouth. Sigh.
Susan
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Gonegirl- I think you are going to feel much better on this dose and schedule!
My Medicare info said that Xeloda costs $500. per month- my co-pay was much less than $200- sounds really high. I wonder if a mail order or other plan would be less?
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I need to edit my post about the cost of Xeloda.....I was told it's $12.00 for a 28 day supply of 500mg tablets...so you'll have to do the math. I should have been more careful with the numbers.
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Has anyone read about, heard about, or tried ice baths for hands and/or feet to reduce the effects of hand/foot syndrome symptoms? This would amount to adding ice to a bowl or dishpan of water to stick your hands or feet in for a few minutes. Any thoughts on if this might mitigate the effects any?
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Denny. Thanks so much that tip. I'll ask
Susan
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weninwi...when I first started with x and had a bad toenail infection (cause by folic foods), I went to my podiatrist and she said that it wouldn't help since it actually would dry out the skin.
Did you cut down on folic foods?
You can also get ice socks and ice gloves that I wasted a lot of money on and no longer use. eBay and Amazon has them.
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denny,
Thanks for responding. Yes, I've stopped eating dark leafy greens and have switched to iceberg lettuce. Also stopped eating avocado, which I miss. I'll look over my diet again, to see what else I might reduce or cut out. My fingers first became red and numb and now they are less red, but dry and starting to peel a little. So far my feet have been less impacted, but that could change. Every day the hand/foot symptoms seem to change.
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A recent meta-analysis of trials indicates that nothing tested prevented HFS, but that Celecoxib (a prescription anti-inflammatory NSAID; 200mg twice a day) was able to keep it to a grade 1 level.. Fortunately Celecoxib also has anti-cancer activity ...https://pubmed.ncbi.nlm.nih.gov/36564149/
I also saw that putting your hands or feet on ice (or like a bag of peas) for 10-15 min can provide temporary relief...
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Thank you cure-ious for the information! I think I'll try the ice pack temporary relief intervention and see how it goes.
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I never heard that Celebrex would help. I will stick to being careful with my diet.
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kbl, this is Anne Loeser. Thank you for your kind words about my book and complimentary. pdf! I've continually updated all formats as new research unfolds and new drugs are approved.
Due to recent health issues I have stopped updating the book as of Jan. 4, 2023. It was a difficult decision but I no longer have the wherewithal to conduct research and update all 3 versions (paperback, eBook, and .pdf). The Jan. 4 edition of all three formats states this in the Foreword. So drugs such as elacestrant that were approved after Jan. 4, 2023 are not in the book.
I am glad that the Guide has been helpful to many, and appreciate readers' feedback!
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anne, thank you for this incredible publication. I'm sorry you're on a rough patch, but I'm grateful for everything you've done.
Susan
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Bestbird, I second what gonegirl said. Your research and your books have provided a wealth of information to so, so many of us! What is unique about what you offered is your understanding that the treatments for metastatic breast cancer are continually updating and ever-changing, and you would revise your writings to reflect that, to keep us up with the times. Thank you from the bottom of my heart for all your contributions to all of us! I know you aren’t a frequent poster, but I always love “seeing” you when you do! I’m so sorry to hear about your recent health issues. Please know we are here for you! Sending many hugs your way!
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Bestbird, thank you so much for all of your hard work to help those of us who had no idea about breast cancer. Your work is invaluable. I’m so sorry you’re not feeling well. I am also sending you a big hug and appreciate everything you’ve done.
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Bestbird (Anne) - First I want to say how very sorry I am to read about your current health issues. I'm wishing you all the best and have my fingers crossed for you.
Second, I want to tell you how I had only heard about you very recently, as I transitioned from stage 3 to stage 4. Within the last 2 weeks, several members here told me about you and your book, and I just got it delivered last week from Amazon. Due to my own issues, I have yet to delve into it, but am absolutely looking forward to doing so. When I read about what you had done with the book - and that you did this while being stage 4(!!!!), I was pretty blown away. You have given so many such an invaluable contribution and gift. I for one am extremely grateful, and was so glad to learn about you, and while I am only one, I am certainly not THE only one for sure. You have quite a fan base.
Please accept my gratitude and good thoughts that I am sending your way. I had no idea that you posted here, and am very pleased to "make your acquaintance".
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Bestbird...all the best in your battle. How wonderful about your book and your ability to be so helpful to all of us!
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Bestbird,
I had ordered your book previously on a tip from someone on BCO and just reordered an updated copy after learning it would be the last update. It's an outstanding book filled with invaluable information for any woman with MBC. My thoughts and prayers are with you as you deal with your latest challenges.
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All - Thank you your kind words! It means so much to know that the Guide has been helpful, and I hope that it has been useful for improving quality of life for patients and sparing them hours of research!
If you have a moment and are interested, please have a look at the Patient-Centered Dosing Initiative! It has been pivotal in moving the FDA and the oncology industry away from the concept of leveraging the Maximum Tolerated Dose (MTD) in Phase 1 clinical trials in favor of a dose that is both effective and tolerable. The implication for future oncology patients is that drug dosages will be better tolerated. https://www.therightdose.org/
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Bestbird's The Right Dose Initiative is exactly the topic that brought me here. I am due to start Xeloda on Monday, got my pills and now I am wondering about the starting dose. I see several others here have been started on the 3000mg a day dose like I am However, I also read that the dose is based on body surface area. Weninwi shared a formula to calculate this. I could not find it again(one day I'll figure out how to bookmark a post so I can find it again, lol). I admit, math was never my strong point, and I really don't understand how this translates to xeloda dosing. It seems like 3000mg is the max starting dose for everyone, right, regardless of height/weight, past medication response? I wonder how that was decided. What is the minimum? How is that decided?
According to the Right Dose Initiative survey. Xeloda was the number one drug that has a reduced starting dose. I am sure there is a good reason for that. I I don't understand the concept of starting at a high dose until toxicity forces a dose reduction and pause in treatment.
I for one would have rather start a slightly lower dose and go up if tolerable. But perhaps that is because I have had so many reactions and sensitivities to medications in the past. Anyhow, thank you all for sharing your experiences. I will be on a crash course of note taking and learning from all of you over the weekend
Bestbird- thank you for all of your valuable contributions to the education of all of us with the disease. I have so much more to learn thanks to you! My thoughts are with you!
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Hello to all. My reason for popping in this morning is to share the following message from the Mods that has been posted on the forum. I want to make sure as many people see it as possible. Please spread the word.
Important update:
We're very close to the launch of our new community forums! The conversations that have been shared here over the past 20 years will be waiting for you in the new forums.
During this migration, which will begin on March 12 and end approximately on March 23, all newly created threads and posts will need to be moved by the mods to the new forum through a manual copy and paste process.
Unfortunately, we can't migrate private messages you send and the threads you favorite during the migration period. Please copy and paste any private messages you'd like to save for yourself in a separate document, and write down any favorites you want to bookmark in the new forums.
We thank you for continuing to be patient with us through this process. We're doing our best to make sure all conversations continue and pick back up where you left off on the new forums very soon!
--The Breastcancer.org Community Moderators
March 9, 2023
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Bookgal- I think that the phase 1 studies look at the highest dose tolerated and get efficacy data from that and later find out that many other dosages are just as good. maybe a few percent of people actually need that super high dose so they want to capture those people so the efficacy numbers look good.
I have heard that USC starts everyone on 2000mg per day and has the same efficacy outcomes. I have also heard that Americans can't tolerate as high a dose as Europeans because we have a lot of added folates in our diet (cereals etc). I don't have the papers re this info anymore.
Cancer is one of the diagnosis's that starts with highest dose and goes down based on side effects-
I started at 2500 per day-decreased to 2000 due to HFS- could barely walk. later switched to 7/7 schedule because my ANC was too suppressed on the 14/7. very tolerable drug that worked for 2.5 years on the above regimen. good luck
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Thanks, nkb, for your reply. That is good info to have. I did not even think about folate in fortified grains like cereal and breads. I'll have to be on the lookout for that and figure out what a daily limit should be. It's also good to know that a reduced dosage can be just as effective. Thank you for sharing
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Bookgal,
Here is that reference I posted about FDA updating the prescribing information for Xeloda: https://www.empr.com/home/news/xeloda-labeling-upd...
From the new label: "The recommended dosage of XELODA is 1,000 mg/m2 or 1,250 mg/m2 orally twice daily for the first 14 days of a 21-day cycle until disease progression or unacceptable toxicity. Individualize the dose and dosing schedule of XELODA based on patient risk factors and adverse reactions."
My MO prescribed my dose based on the 1,250mg/m2 option, but she told me she always lowers the dose or "rounds down". So I started on a smaller dose than if she had prescribed based on the new 1,000mg/m2 option.
There are formulas on line for calculating Body Surface Area. I did the calculation for the math challenge, but I don't think it is necessary. However, it is why they no doubt got your height and weight before starting. I think you're correct that most people don't start higher than 3000mg per day.
I started on 3000mg/day 14on/7off, which was a total dose of 84,000mg over 6 weeks. I developed progressive hand/foot symptoms so after 3 cycles I was going to drop to 3000mg per day 7on/7off, which would have been a total dose of 63,000mg over 6 weeks. But I changed my mind and dropped to 2500mg/day 14on/7off which is a total dose of 70,000mg over 6 weeks. I was less nervous with the smaller dose drop, in terms of the drug being effective. My hand/foot symptoms are less on this lower dose, but if my labs look worse at my next visit I will ask for the next dose drop to 3000mg/day 7on/7off. I had a good phone consult with a different MO than my assigned MO who explained these dose differences and schedules. She was reassuring about the 7on/7off schedule and said I could "pivot" to that lower dose if side effects continued to be troublesome.
I'm finally starting to relax about Xeloda and the potential side effects. The drug is actually fairly tolerable for me, I just hope my next scans show the drug is continuing to work. I hope the best for you as you start on Xeloda.
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Thanks weninwi for that information. I think I finally understand it. I also appreciate you sharing your experiences. I am glad to hear that you are finding Xeloda tolerable and that a dose reduction has helped with your Hand Foot symptoms. I am holding my breath about that since I already have some issues with my feet. I hope that the Xeloda continues to work for you
I hope it is the right drug for me too! I am happy that there is a place like BCO forums where I can ask my questions and get intelligent answers and advice from other like you. Thank you again 0 -
I saw my provider today - actually the NP. This is my week off of the 21 day cycle 14on/7off at the lower dose of 2500mg/day. My labs were good. Hand/foot side effects: the numbness in my fingers has gotten less, but still present and the numbness in my feet is a bit less, but the redness pretty significant especially at the end of each day, with some pain, but no peeling. I call it "angry red". I've decided to do the next dose drop to the 28 day cycle at 3000mg/day 7on/7off. I may also delay restarting by a day or two to give my feet a bit longer to recover. On this new schedule I get next labs and see the provider in 4 weeks, instead of 3 weeks. Scans will be in mid May. I'm encouraged about the drug's tolerability, and hopeful it is effective for at least the median PFS of 6-9 months.
On another thread rk2020 mentioned hearing that some pharmacies were reporting a shortage of capecitabine. I asked Accredo Specialty Pharmacy about this. The pharmacist I talked with did confirm that some pharmacies were reporting a shortage, but not Accredo. She explained there are many suppliers of capecitabine and she was not aware that all were reporting a shortage. I asked if capecitabine was made in the USA or elsewhere and she did not know. She thought the issue was increased demand.
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