All about Xeloda
Comments
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FYI-When I was taking Xeloda I questioned the importance of having it within 30 min. of food since I sometimes forgot. I consulted my niece, a scientist, to help me understand the information that came with the drug. She wrote this:
You are correct in your understanding that food delays absorption of Xeloda - however the blurb you included does not provide any information about whether that is good or bad. I looked into this and found an answer for you though that I think is correct.
When the initial clinical trials for capecitabine were conducted, the people who designed the trials were worried that the drug would be degraded by the highly acidic environment of the stomach. Eating food makes the stomach less acidic, and so the first patients who took this drug were asked to take it after eating so that it would be less likely to degrade. The clinical trial was successful (cancer patients had better outcomes on the drug) and eventually they conducted other studies to specifically investigate whether taking the medication before or after food made any difference to how the drug is processed by the body (this is called pharmacokinetics). The results of this study were opposite to what was expected - in patients who hadn't eaten, instead of having less measurable drug in the body, they actually found more - so the idea that the acidic stomach was going to degrade the drug proved to be incorrect. However at this point all of the evidence for how safe and effective the drug was had come from trials where people had taken the drug with food, and since drugs have to be prescribed following the procedures used in clinical trials as closely as possible to ensure that patients have the expected clinical experience, the recommendation continued to be for patients to take capecitabine with food.
I've attached a paper from 1998 that is relevant to this issue, and highlighted a few sections that you might find interesting. They conclude that the effect of food on capecitabine pharmacokinetics is probably not clinically significant, but they don't know whether changing the dosing to have patients take the drug without food would pose any additional safety risks. So, the authors recommend "to continue to take capecitabine after food (within 30 minutes) because all clinical studies thus far followed this recommendation."
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ninaca,
Thank you for sharing that very thorough explanation of when to take capecitabine. Patients want to "get it right" for the best possible outcome and understanding the rationale behind instructions helps. How long did you take Xeloda? Were you on 14/7 or 7/7?
Wendy
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ninaca. That was very thorough. So helpful.
For me it's day 2 of Xeloda. I tend to be sensitive to meds so I was freaked I might have symptoms already.
My husband and I have been at home for 3 years now. Today we started booking a trip to asheville nc. Very scary since what tends to happen is I get sick and have to cancel. Knocking on wood we'll make this trip. Be nice to just chill in a non home location
Susan
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Ninaca-that is interesting, but that is what I have been doing for over 5 years of Xeloda.
And I have skipped my dose several times since it really isn't on a timer of sorts. On Monday I had a CT scan and didn't want to take my pills since my stomach was upset from the barium. Then yesterday I had my Herceptin. Now that I have hypoglycemia, I have a reaction after Herceptin so I skipped my pills yesterday too.
But my CT scan wasn't very good. I tried to copy it here, but it isn't working. The previous lung spots are gone, but now I have new ones.
I have wall thickening of my rectum and sigmoid colon.
And a 1.2 cm lucent lesion in my inferior L5
And hepatic steatosis with increased enhancement.
I will see my onc this Friday for an interpretation. Of course I googled the stuff, but he is likely to just wait and see what another CT in 3 months shows. But all of this stuff wasn't apparently present 3 months ago.0 -
denny123,
I had thickening of the lower bowel after about 2 years on Verzenio. I saw a GI specialist at least twice - had upper GI and colonoscopy - all those findings were Within Normal Limits (WNL). When I asked about the bowel wall thickening the GI doctor didn't seem very concerned...said something like "we see that at times". Anyway the bowel wall changes returned to normal on my scans after I stopped Verzenio. I hope your recent scan changes are not too significant. Positive thoughts are with you. Let us know what your MO thinks.
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weninwi-what is WNL? I should know....
Since I have hypoglycemia, I am worried about the prep. I have to eat every 2 1/2 hours or my BP goes up to 185/115. If I have to get one, I will ask if I can get the prep in the hospital. I prefer to be there if I have a stroke.
Thanks so much for giving me a little relief !!!!
Denise
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Denise,
I usually spell out acronyms....next time I'll be more careful....WNL = Within Normal Limits. Hope your scan goes OK...getting the prep at the hospital sounds like a good plan.
Wendy
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Wendy- thanks! I thought that I knew all of them! But your post made me feel much better!
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well, after just one week, my onc is dropping my Xeloda dose by 1000 mg. Thank God. I tend to be very sensitive to meds and within a few days my neuropathy was worsening and day 6 I was getting some nasty nausea and diarrhea. I learned the hard way that I need to docs about SEs quickly. Thank goodness this doc listened. I think I'm in love with her.
BTW, another woman I know on Xeloda developed pulmonary embolism from clots in the legs (DVT). Turns if you have tendency to this, Xeloda can kick it off. She's OK now but scary. Sigh. Side effects
Susan
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Denny 123, Do you have lobular BC? I had thickening of the walls 12/2019 in small intestine and had a resection of the ilium where they found Lobular tumors around the outside of the intestine that was squeezing it so food was not going through properly. Whew, it was a close one for me. I had problems for a year, GI was unable to find anything, until the resection. It also had gone to a rectal node which they biopsied and found lobular BC. Xeloda cleared it up until it didn't and I went on Taxol for 14 months. I am now on Enhertu, since within 3 months of a clear PET they found "active uptake" in colon and small intestine, inside and out. Since it is a PET they don't look at "walls" only uptake. It's nice to hear that Wendy's walls stopped being thick once she stopped Verzenio. Different reasons for thickening.
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nina...thanks, but I really don't know. I do have metaplastic BC which is rare and aggressive. I think my left was ductal and my right was tubular. So long ago, and I will have to dig up my papers.
Thanks so much for writing since it makes me feel better. Sorry thta you had to go through all of that, though!
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gonegirl....how much of a dose are/were you taking? Some doctors start really high, which doesn't make sense. My onc won't prescribe more than 3,000 to anyone, no matter what their weight is.
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denny, she started me at 3000 and is now moving me to 2000. I hope that dose cuts these side effects. Mouth sores, neuropathy, nausea and diarrhea all so quickly. Goldang it.
Denny good idea about going to hospital for this stuff. Extra eyes and help if you need it
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After 3 cycles of Xeloda (3000mg), my scans Feb 5 showed the previous new lesions in liver are either stable or have shrunk and no new progression in the bones. Due to hand/foot symptoms that were worse during my 2nd week on, my MO gave me the choice of either a dose change (2500mg) with same 14on/7off schedule or same dose (3000mg) and change the schedule. I opted for the same dose with schedule change, so now I'm on 7 days on/7 days off. I hope the medication remains effective. One reason I choose the schedule change is because my second opinion MO from Mayo told me she usually orders the 7on/7 off schedule because patients have fewer side effects. I do have increased fatigue and finger and foot numbness, but in general I'm feeling pretty good. I'm thankful.
In January I developed four new red, itchy skin lesions. I thought they were due to dry, winter skin, but became alarmed after reading about skin mets, which I had not heard about before. I saw a dermatologist (who I've seen before and like) and he diagnosed 3 spots as inflamed seborrhea keratosis (benign) and 1 spot as actinic keratosis (precancer). He froze them all with liquid nitrogen. He thought they cropped up because my immune system has been affected by the meds. Liquid nitrogen is an easy and effective treatment and I'm so relieved it not skin mets. I mentioned the new skin lesions to my Mayo MO and she said breast cancer skin mets usually show up on the chest, but they can show up on other areas.
I really appreciate all that everyone shares on this thread.
Wendy
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Weninwi- I'm sure that the 7/7 schedule will help, next step lower the dose! once it is known to work a dose reduction usually doesn't change that. so glad the skin was a simple fix.
after my initial chemo AC-T- many actinic keratosis showed up on my scalp in my hair part- I never liked hats and the sun damage got revealed with the chemo.
Happy about your scans!
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Hello all of you on Xeloda - I have a question: I have noticed that many of you taking Xeloda are ER+. My understanding from the studies has been that Xeloda offers a lot of benefit to those who are triple negative, but not so much to those who are ER+. I also read on these boards about some women who are ER+ (not stage 4) asking their doctors for Xeloda, but the doctors decline, due to just that fact, i.e. it doesn't help ER+ much at all. These women said that they just wanted to throw everything at their cancer, even if it was just 2-4% benefit or something. On the other hand, I've seen where some ER+ patients do take it, and their doctors prescribe it, even given the minimal benefit to ER+.
My doctor had wanted me to take Xeloda when I got proton radiation. I declined based on the low benefit for ER+ that I'd read about, and also because I heard that radiation side effects could be much worse if you took chemo at the same time. I told her I would take it in a heartbeat if I were triple negative, and that I would still be open to taking it before or after radiation, even though it was my understanding it wouldn't help much, if at all, for ER+. She pulled up the study and said that yes, the benefit for ER+ was minimal, and then she never discussed it again.
My question is then why are so many who are stage 4 and ER+ here getting Xeloda? Is it because even a 2-4% benefit might help and is worth it, given the dire situation, or is there something different about stage 4 ER+ where Xeloda works better than it does for the lower stages? From what I know I just can't see why so many ER+'s are on Xeloda, given what I understand to be a very minimal benefit.
Would love to hear about your thoughts and experiences with this.
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threetree, that's a very good question. Back in August of '21 I had worsening of my stomach issues due to my cancer. I was on Ibrance and Letrozole and felt it was not working because all of the symptoms started to get worse again. It had been two years. I started losing a lot of weight and was not able to eat again. I chose to switch meds. I told doc I wanted Xeloda. She said let's give Faslodex with it. After one month, my tumor markers shot down and are now at 109. They'll never be normal, as it's in all my bone and bone marrow and still one place in my stomach.
Fast forward 15 months, and I've moved. I am still with the same center but not the same doctor. I moved three hours farther, and they have this doc an hour from me.
The first time she saw me, she said she couldn't understand why I was on this combo because it's not standard protocol. She took my case to the tumor board, and they unanimously said that I should just be on Faslodex. The doc said she didn't think Xeloda was doing anything and that the Faslodex was doing all the work. I came off the Xeloda on January 29th. Now we'll have to see how my bloodwork looks just on Faslodex.
I will still stay in this group, but for now, I am no longer on Xeloda. My hands and feet are still having a few issues, but it's getting better. And I don't have to nap every day anymore.
I'll think of all of you.
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Kbl - Thanks so very much for your comments. Your story is very interesting, and given the awful side effects that I'm hearing Xeloda has, I can't believe so many who are ER+ are taking it and putting up with the side effects, if indeed what I understand about the minimal effects for ER+ are correct. When my doctor wanted me to take it, she suggested that the side effects were mild, and that it was great that I could take a pill at home, etc., but boy, from what I read on here, she was not telling the full story. All this tiredness, needing to nap, the hand/foot thing was never discussed with me. I was led to believe that if I took the Xeloda it would be far less troublesome than my original AC+T chemo. From what I read here, I think I was given a snow job.
Kbl, I sure hope that just the Faslodex continues to work for you, and that you have far fewer side effects to deal with without the Xeloda. Please do come back here to let everyone know how you fare after Xeloda. I'm not taking it now and never did, but I read this board more frequently than many others, because I see that it is a frequently used stage 4 drug for ER+ - a big part of the whole new world I am entering since my new progression to stage 4. Thanks and best of luck!
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Threetree, I’m not sure if you’ve heard of Ann Loeser’s book, but here is the link to the free PDF version. It’s got lots of great information.
https://www.insidersguidembc.com/_files/ugd/541049_82f0fb09aec947c59fa6a98d406002ba.pdf
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Kbl - No, I had never heard of Anne Loeser or her book. Really appreciate the link to it. It looks super comprehensive and pretty current. I think I'll probably order a copy from Amazon. I don't know if I've ever downloaded anything with that many pages before (234). It'd probably be easier to read in paperback form anyway. I read so much on the internet now, but sometimes it's just nice to do it the old fashioned way. Thanks so much for the info and link. Very helpful.
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Threetree, so glad I could help. She is well-known here. Her book is awesome.
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I already ordered it, and still might download the PDF, if I get the nerve and don't think my computer will crash. It'd be nice to have online just as a reference sometimes. Thanks again.
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Kbl. Thank you, thank you, thank you for Anne Loeser book. Incredible info. She has a page linking to buying it and a link to download a copy that she updates,
https://www.insidersguidembc.com/about
I wish I'd had some of this info before but so grateful to have it now.
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Yay. I’m glad you both are going to benefit from her book. It’s an amazing guide, and she does continually update it.
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gonegirl...that sounds good. Good luck!
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threetree-I am 21+ plus years at Stage 4 MBC de novo and am ER+. I have been on Xeloda for over 5 years along with Herceptin. Considering my BC history, Xeloda is definitely doing a great job for me. I also have metaplastic BC which is rare and very aggressive.
If Faslodex doesn't work, I would urge you to try Xeloda. Since I am watching my Folic Acid foods, I only have dryness. Faslodex didn't help me at all when I had it with Kadcyla.
Wendy and NKB....I used to have a red spot on the top of my head too. But it was caused by Folic Acid foods. Once I cut back on those foods, the spot went away.
I had previously mentioned my iffy CT scan and saw my onc today. He isn't worried about any of the "significantly abnormal" results, as written on the scan report.
We just have to watch the spots that seem to come and go. Whew!
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Denny123, great news on your scan. I hate those scares.
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Wow, Denny123, you are an inspiration indeed! 21 years! Thanks very much for your Xeloda and Faslodex comments. Good info for me to file away in the old brain.
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Denny. That is wonderful to hear about your scan
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I asked my Mayo second opinion MO about the effectiveness of Xeloda for ER positive tumors. She responded: "Xeloda is a very good chemotherapy option for ER positive recurrent breast cancer. Response rates even for those who had prior intravenous chemotherapy can be 25-30%". I take that to mean 25-30% of women will respond to the treatment. My Mayo MO previously told me the median PFS time is 6-9 months, however she said she has one patient who as been on it 3 years. I'd ask my local MO the same question, but hesitate as she dislikes questions especially questions that imply a challenge to her decisions. I have the ESR1 mutation and the new drug Elacestrant (ORSERDU) was not yet approved by the FDA when Everolimus and Fulvestrant failed, so I'm grateful Xeloda was a treatment option for me, and doubly grateful that I have responded.
I did find this article re the benefit of Xeloda for ER positive vs ER negative: https://www.cochrane.org/CD011220/BREASTCA_benefit...
Key messages
In the setting of advanced disease, there was a modest increase in time to cancer progression (how long cancer growth is stopped) with the addition of capecitabine in hormone receptor-positive but not in hormone receptor-negative breast cancer, although no survival benefit was seen in either group. However, when broken down by how capecitabine was added to the regimen, the addition of capecitabine to other chemotherapy was most effective, demonstrating both longer time to progression in both groups and improved survival in hormone receptor-positive cancers.
Like threetree I've noticed many women on BCO who have been on Xeloda, and some women more than once.
Wendy
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