Yesterday I got a phone call from a specialty pharmacist who will be sending my first round of Xeloda out on Monday. She had questions for me and told me I will be on a 3 week schedule, 2 weeks taking Xeloda twice a day and then 1 week off. They will phone me to see how I am doing and then send me a second round of the meds. She mentioned nausea and mouth sores as most likely side effects. And suggested I call my onc Monday to get a prescription for an anti-nausea drug and mouth wash recommendations. Are these the side effects you have had with Xeloda? how long til these showed up? effective measures to control those?
I'm more anxious than I've been in a long time! E+ cancer recently mutated to triple negative mbc, so no more "easy" treatment but on to actual chemo-therapy in the nearly 19 years I've had this stupid lousy cancer!
My digestion continues to be an issue, going in and coming out! I'm able to eat only a little at a time and am still losing weight. (something I've wanted for years, though not this way) I have hemmeroids and that complicates bowel movements! The surgical procedure I had in Oct. when hospitalized for a blocked intestine, removed part of the section of intestine right outta the stomach, so food doesn't get digested in my stomach as much as it used to. I have to wear an adult diaper at night and pads during the day. Sigh!
It just occurred to me that perhaps digestive problems will impact the metabolizing the Xeloda--one more thing to worry about, lol. I'm not getting the Taxol my onc initially suggested as I', allergic to trees, and its derived from tree bark. I'll shut up now!
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PJBinMI
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Here is a saying I heard for the first time this week “You must be a David because God put a Goliath in your path”. Certainly applies to MBC. I always gather strength and hope from your posts. Praying Xeloda will work for you and the side effects will be minimal with good results.
I PROMISE Xeloda isn't "that bad". You keep your hair, for one. The hand and foot thing is a bore, but if you moisturize...a lot... it helps. I find if it gets really bad, the occasional Advil at bedtime helps. My Dr. said it calms the inflammation.
The digestive thing might be a bore. I have had on and off digestive issues, exacerbated by my India trip . Hopefully your doctor will have ideas for that. The main thing is Xeloda works for many women. It all sucks, but as drugs with side effects go, this one is pretty do-able, at least for me. I am hoping to stay on it for a long time.
I agree Xeloda/capecitabine is not that bad! Hand foot 🦶 syndrome is gross but tolerable if you stay moisturized. My feet are much darker now but I don’t care because I feel so much better on this chemotherapy! Hang in there
I have been on Xeloda for five months and have been pleasantly surprised at how effective this chemotherapy has been. It is the first time I have had shrinkage of all lesions in over two years.
The side effects have not been that bad. I do get days where I experience nausea, usually not long after each dose. I definitely had peeling on the bottom of my feet and hands in the beginning but it has calmed down and is not really a problem (I use lotion and salve on my feet daily).
I hope you will experience success with this line of treatment. 😊
I was on Xeloda for almost 2 years. Side effects were not bad at all. In fact I believe I didn’t have any. I don’t know if my low metronomic dosage was the reason. But it worked for me and I was devastated when I had to eventually change meds. The digestion issues you mention are what I am experiencing now on Afinitor. I also have pimples on my face and scalp. But no mouth sores so I am grateful for that. It’s just not normal to see a 64 year old with pimples😂
Hi there! I hope you do really well on Xeloda! I just started it last week. My doctor thought metronomic dosing would be best for me. I am on 7 days on, then 7 days off, and so on….. I started at 3000 mg per day split in twice a day. I just finished my first week. After the third day, I was super nauseated and took Zofran for the nausea, which in turn caused severe constipation, which aggravated the nausea, ugh!! I called my doctor and she prescribed Compazine instead for the nausea and lowered the Xeloda dose to 2000 mg per day split in twice a day. The lower dose took care of everything and I made it through the rest of the week ok with no nausea. Fatigue was the only other side effect I noticed. This is my week off and I immediately felt great…. My doctor told me to watch for hand and foot and her pharmacy sent me a big jug of Udder cream to use a few times a day on my feet and hands. So far that has not affected me. The only other side effect I was warned about was diarrhea, but so far that was not a problem for me either. I hear this is a pretty tolerable medication, I’m hoping that is true! I had no side effects from Ibrance/Letrozole/Verzenio/Faslodex/ or Anastrozole, so I was surprised at how nauseated I got from the higher Xeloda dose. I wish you all the best, and hope you do really well on this new path! Take good care!
I am now on my 3rd cycle of Xeloda, just beginning this trip....advised some side effects will dissapear, others won't show up for several months, if they do. My dosing is 3000mg/day, 3tabs a.m., 3 tabs p.m. 2 wks on/ 1wk off. Will be monitoring blood work and side effects for 3 cycles, then discuss lowering dosage. Integrative Onc Mark Rosenberg in Boca Raton FL has a triad of xeloda with 2 other offlabel drugs that he's had great success with. You may want to consult with him........... My experience so far: first cycle of 2wks: no side effects at all other than one MONSTER fatigue spell for about 2hrs...went away, never to return...no SE rest of cycle, felt great. 2nd cycle: first day fine, days 2-4 reddish, bleary/teary eyes, eye irritation, TIRED eyes, body didn't feel tired, but eye thing made me feel sleepy. Gone by midday of day 4. rest of cycle minor occasional tired/drowsiness, lasting only short while, not all day....HFS kicked in 2nd week of 2nd cycle, no breakdown in skin integrity, but swollen, puffy, tender feet, felt like walking with sand packed in socks if doing socks/shoes. kept up with foot creams 4x/day....after 2.5 days of that, started doing epsom salt foot soak at night (1/3c in plastic dishpan thing just big enough for feet, also used essential oils in it...feet good after 2 nights of that...massage therapist addressed on first day of off week, pain free after that!!! Look for foot creams with high (40%) urea....integrative onc from MAYO/JAX rx'd Topical Heparin Gel out of North Beaches Pharmacy (compounded item)...just started using it this 3rd cycle. so far so good. keeps feet a bit drier than creams, but sensory is o.k., and skin integrity still good. I want to try it without additional creams to test it....will keep you all updated. (see post to BettyBuckets for additional info on Topical Heparin Gel,,,,we had a thread of info on it there). Cycle 3: same deal with eyes, SE gone by midday of day 4.
Other than minor foot inconvenience, this has been good for me...feeling much better than hormone block treatments.....hair growing back!! Better energy, clarity overall. My cancer was de novo, so no surgical removal of tumor....but primary breast tumor has DEFINITELY shrunk by half in this short 3cycles..hoping mets are responding likewise.
No mouth sores, advised to use 1tsp salt or baking soda w/8oz water recipe to rinse after meals...don't need whole 8oz after each meal, just mix it in that ratio, then use just a bit to rinse mouth....will last a short while...I keep in an 8oz ball jar near sink and use after meals. Also, FYI, foods high in Vit.B6 will help with that. Have not had nausea or diarrhea....felt great on off week, on weeks just occasional tiredness here and there.
just some clarification on Topical Heparin Gel....this is a TOPICAL application.....it is NOT SYSTEMIC, ingested/metabolized. Pharmacist advises no adverse events observed with this in clinical trial...pubmed.ncbi.nlm.nih.gov/353.... Integrative onc at MAYO indicated she had patients with skin breakdown use this and heal well enough to return to running, soccer, tennis, etc....
Today is the last day of my first two-weeks of taking capecitabine (Xeloda). I am on the same schedule as you. So far, so good! 🤞 I was previously on Ibrance and this has turned out to be “easier”. I know everyone’s responses are different.
Because of all that I’ve read, I started moisturizing my feet and hands the very first day. I do it multiple times a day. I bought some little cotton booties and gloves so that I won’t be smearing everything with lotion, but I remove them as soon as the lotion has been absorbed. My feet and hands are really red and hurt a bit— nothing nearly bad enough to take even Tylenol—and if I’ve used them a lot they are kind of purplish… but no cracks, blisters, or bleeding. I walk enough to get my steps in but break it up into smaller chunks.
But, I am not as fatigued as I was on Ibrance and the “background” faint-but-constant nausea is gone. My appetite is better. No mouth sores.
I have liver mets so I often wonder how the processing of my meds is going. My hands and feet tell me things must be going as expected. I see my oncologist in a week for blood tests to see if I can keep going on this med.
I was so upset to say goodbye to Cape, it was the best treatment so far for me. I did get some foot issues that I blame myself for, but it didn’t stop me from being mobile.
Keep everything moisturised- especially at night. Wear cotton soaks and lather up on cream before bed as soon as you feel a change in your feet. Hands easier to monitor,
I looked up the pharmacokinetics of the drug and if it was part of your intestine that was removed and not your stomach the metabolism of the drug should not be affected. If part of the stomach is removed absorption and concentration of the drug is expected to be faster and higher. It seems that many people start on the highest dose then get it lowered because of side effects. If l were starting the med l would probably ask my doc about starting on a lower dose. I had been on lbrance and was on the lowest dose most of the 5 years that the drug did work for me.I wish you the very best. I can certainly understand and appreciate your anxiety. 🌺
Thank you to all who responded! Delivery of Xeloda supposed to happen this morning, then I'm to phone my onc's nurse. Had baseline blood work done yesterday. Will have that done again and see onc's NP in 3 weeks, my off week. Also have Rx anti-nausea meds to pick up at local pharmacy. Will be glad to start this, and hoping S/E will be mild if I have them at all. Will keep you posted!
PJBinMI, By now you may have started Xeloda, which I've read much about (including from those with metastatic TNBC) and have heard it to be a very effective drug for many people! I hope you will do very well on it for a very long time!
It appears as though we share many of the same issues. I too have GI problems (gastroparesis, cancer on large bowel and elsewhere) and recently learned the cancer is lobular as opposed to ductal, which it was written up as years ago. Since lobular breast cancer seems to have an affinity for the GI tract and peritoneal area, a good part of my GI discomfort and weight loss is also caused by the cancer.
Something to consider about Xeloda is that its label was recently changed and now states, "XELODA dosage may need to be individualized to optimize patient management." Lower dose of Xeloda has also been shown to be as effective as the recommended starting dose. Feel free to read the document called "Dosage Related Studies" here: therightdose.org/resources
I could have written your posting myself as I have almost an identical story.
20 years fighting, mutation to triple negative, digestive issues, weight loss (25lbs), even the hemmeroids!
I have been on Xeloda going on 6 months, the 4th line of treatment. My last Pet/Ct showed less activity and the last three Ca27/29 tumor marker tests have been in normal range. But... the hand foot syndrome is a nightmare for me even with a lowered dose from 3000mg to 2000. I am in constant pain, can hardly use my hands or feet. I must have food in my stomach to take the medication or severe digestive issues. Ironically this occurs more on my off week. thankfully no mouth sores like I had with Piqray but much fatigue. I will continue on this medication as long as I can but if anyone has relief suggestions for the HFS, I would greatly appreciate it. Good luck PJBinMI, our journey continues!
PJB I think of you often and keep you in my nightly remembrances.I am ever so thankful for the encouragingsupport and advice you have given me ,and others,in the past.I am wishing the best for you on this new drug.
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