All about Xeloda
Comments
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Sandi, I started Xeloda 16 mo ago at 3000/da. (1500 am + pm) 7 on/7 off as directed by Rachel Sanford, breast cancer onc at Sloan Kettering in NYC. I am an active 74-yrs old, 5'6" and 136 lbs. I have, so far, bone mets only. I had been on Ibrance/Faslodex for 21 mo until it quit working, and I developed hypercalcemia.
The HNF was bad, but not apparently, as bad as yours, which sounds truly horrible. I had some difficulty walking at 3000/da, as my feet were burning and very painful, and both hands and feet were red and peeling. My Richmond onc dropped me to 2500, which ultimately proved to be still too high a dosage.
I have been at 2000/da (1000 am + 1000 pm) for the past 6 mo or so. Hands still hurt, if I don't wear gloves, but feet are mostly okay. I've been stable throughout the 16 mo. I'm NEAD for now and ever since I went on Xeloda.
I wear the gel-lined socks at night when I get in the bed. I wear nitrile exam gloves 24/7. At first I used cream/Aquaphor first, but I don't see a difference with or without cream. However, if I take off the gloves, my hands get red and painful quickly. I think it must be the natural moisture which my hands retain with the gloves on, but I don't know. I just know that my hands do NOT hurt with the gloves, and they are dry, red, and painful within an hour of taking the gloves off.
I just peeled off a glove and took this photo: mildly red but not painful. Certainly, we have proven among us that everyone reacts to dosages a bit differently, but your dose sounds too high to me. I surely understand that you need to squash those liver mets, which I haven't experienced yet. Good luck with whatever decision you and your onc make.
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Thank you Denny123 and JoynerL. I just got back from IV fluids. This is day 5 on the OFF cycle and actually feel better, like, not wanting to be in bed!
My feet feel so bruised, that I borrowed a wheelchair to get to the infusion room. My MO will be reducing..will be interesting to hear what she thinks when I restart cycle 2.
JoynerL..no hand redness..yet. Sorry you have to wear gloves 24/7. I ordered those blue mermaid toe gel socks. They are great. I also ordered 90% white cotton diabetic socks. I wear Skechers, classic fit, air cooled, memory foam slip ons, very comfortable.
Will keep you guys posted.
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Been there, done that. Sandi, if your onc had said no dose reduction I would have personally showed up (me and Vinnie and Tony) to tell her she betta treat my friend Sandi right. I know you are afraid that a dose reduction might hurt your chances, but I really don’t think it will. And consider this: You need your whole body to be as healthy as possible. You need to be able to eat well, get some exercise, live your life, and stay out of the hospital. I have found that often it is only after something like this happens and I am feeling better that I step back and see how bad off I was, that those extreme side effects were gonna take me down. I’m glad the fluids perked you up.
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Has anyone ever discussed with their doctors why the dosage of Xeloda is not adjusted according to a person's weight? I am only a little over 100 pounds and I am on 3000 mg per day, 2 weeks on and 1 off. My feet and hands are so bad I can do little more than lie on the couch all day. Gets depressing as I know how important it is to get exercise and get outside. It just seems that not everyone should be prescribed the same dosage regardless of how much they weigh. Also, I am literally covered in a red rash that itches. I have a call in to my doctor regarding reducing the dosage.
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Hi Charlotte..couch partner.
My MO said it was based on weight and height and a standard starting recommended dose. It must be from some published drug guide.
But she did tell me everyone's SEs are different and would monitor me for dose reduction. Where the original data came from? I have no idea.
Shetlandpony..the room would be illegally crowded..full of my masked, gloved relatives. And they scare me. ha. too funny, Vinnie and Tony plus Shetland..funny.
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Even funnier if you saw me. But as Shakepeare’s Helena says of Hermia, “Though she be but little she is fierce”. I like your scary relatives, they sound great.
Charlotte, if you are reduced to lying on the couch all day, you really do need a dose reduction. I know that sometimes we cancer patients have to go through hard things, but Xeloda is supposed to be a drug that enables you to live in both senses of the word. The dose has to be sustainable.
I will look for the pages of this thread where one of the gentlemen posted details about dosage. I was not kidding earlier when I said dosing is usually determined by what won’t quite kill a person. The typical phase I trial looks for the highest tolerated dose, not the lowest effective dose. I think our oncs sometimes start with that “standard” dose, following the rules to CYA, knowing full well they will reduce when the patient reports bad side effects. My onc is in charge of patient safety for clinical trials at my cancer center, so I have picked up some ideas from her.
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From this thread March 2018 by Husband11:
”This article is a couple of years old, but it discusses various dosing regimins and the success of 1000mg 2x daily.”
http://www.gotoper.com/publications/ajho/2015/2015...
Another post March 2018 by Husband11:
”From what I have read, different dosing regimens may help some patients (ie, 7 on 7 off vs 3 weeks on 1 week off). Its unclear whether higher doses benefit some patients. It's clear that higher doses are not tolerable in some patients. University of Southern California runs at least two hospitals and they routinely prescribe xeloda at a flat rate dosing of 1000mg twice a day. That is a very low dose compared to that routinely prescribed. Some of you are doing 5000 / day. They do this regardless of the patients height and weight, which is how standard dosing is calculated. They report that they get results as good as any higher dosing. Clearly then, there are some women for which a lower dosage is effective. The big question is whether any women benefit from higher dosages. Based on the USC reports, the answer would be no. USC believes the lower dose facilitates higher adherence to the three weeks on and that is the reason for its success.
I've also read that some Oncs believe that women who get high HFS (hand foot syndrome) tend to be higher responders to the drug. My thought is that perhaps that correlates to a more efficient metabolism of the drug to its effective end product. The drug is through several steps metabolized into 5-FU. In Europe, where the drug was initially tested, the dosing was even higher than we use in North America. It is speculated that the reason is different folate levels between Europeans and North Americans. In North America, food is fortified with folates. In Europe, it isn't. Folates play a role in metabolism of xeloda to 5-FU.
My wife, over time, lowered her dosage of xeloda and it continued to be effective. But, individuals clearly differ.”
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And this one by Husband 11 March 2018:
“The theoretical work around the 7/7 cycle is based on computerized simulations of cancer cell division cycles. The theory is that 7/7 with a higher dose will work better and give less side effects. That has not yet been tested in a clinical trial. My wife did 7/7 but instead with a fairly low dose, 1250 mg 2x daily and still got good results. She did however still suffer from significant side effects, and for that reason she switched to ibrance and letrozole.
There is good evidence that different women metabolize xeloda very differently, and that what amount is effective or toxic, is very individual. Some oncologists believe that the more efficiently you metabolize it into its active form, the more side effects will show up, and the effective dosage can be lowered. It varies with genetics and quite possibly with folate intake levels.
https://www.medscape.com/viewarticle/583704_3
In Europe, they don't mandate the addition of folates to flour and cereals. The European women can tolerate higher levels of xeloda. The initial work on setting dosage was done in Europe, and has since been officially revised and lowered for North Americans. The theory is that it is dietary differences, primarily folate intake. More folates = higher levels of the active metabolite of the drug, consequently equal effectiveness at lower dosages, and higher adverse side effects at the European dosage.
There is also speculation that basing the dosage off body surface area, based on weight and height, while being the approved method of calculating dosage, is incorrect in practice.
My wife's experience is that you need to lower the dosage if you are getting too many adverse side effects. If you are getting a lot of adverse side effects, you probably have more than enough to give this drug a proper chance to work, if its the right drug for your cancer. And more than enough probably does more harm than good.”
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I guess it helped that I was NED before going onto 2,000 a day at 14 on, 7 off at first. With the first sign of HFS, I was changed to 7 on, and 7 off.
But since I have been on chemo for 18 years, my onc knew that I am a bit fragile. And my previous bout with a clinical trial of Poziotinib (talk about a near-death dosage), messed up my blood levels.
But since I have been NED for over 2 years, this stuff is working well enough with me. On the days when my feet are on fire, I just sit here at my computer with my feet on ice packs.
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My onc in Richmond (and he was head of a cancer institute) told me that the standard of care with chemo is to start with the highest dose recommended for the drug and work down according to what the patient can tolerate. For me personally, after my visit to Sloan Kettering and just before starting Xeloda, and that onc's recommendation on starting dosage for Xeloda, when I told my Richmond onc what the S-K doc had recommended, his response was, "Oh, good....I would have started you on a higher dosage and 14/7". He was delighted that she essentially gave him justification for starting me at a lower dose. He was relieved not to have to start at the highest possible dosage.
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Hi. I thought to give some advice and encouragement to Xeloda newcomers.
Advice:
I finished my first cycle (14 on/7 off). My last dose was stopped due to red swollen firey feet on day 13. I had 7 days to recover. My firey red feet eventually became a little red with no fire pain...but quickly turned into inflammation on day 5 of the 7 day off cycle. How did I know? Could not put any weight on feet..felt like foot bones were shattered and had to borrow wheelchair. With ice and naproxen, now much better. But not good enough to start next cycle.
MO said at FIRST sign of red feet, I should have called her to stop pills..not have waited untip firey red and swollen. I potentially caused more harm. This could have caused my entire sole to slough off and then taken up to 2 months to heal without Xeloda. Very dangerous. Thank goodness it was day 13 and not sooner as I would not have called early on, just trudged on. I wanted to kill cancer.
So now, extending my off time 4 more days until seen again. If my feet have healed, then dose reduced...the dosage to be discussed then.
Bottom line..don't mess with your feet..get help
Encouragement:
After 1 cycle, my Ca15.3 decreased, my SGOT now normal and SGPT decreased. It is working folks.
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Sandi-good advice. My chemo nurse called me after about a week to see how I was doing and I told her about my sore feet. She had me go in to see my onc, and they gave me a 2 week break and then told me to do 7 on and 7 off. And I was only on 2,000.
So early intervention helps and I wish they had called to check up on you!
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Or at the least, when I called re fatigue and diarrhea with a little heel redness..to have a texted photo sent to them. To be honest, I didn't know at what stage of redness to call.
I am learning.
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Just tuned in. Hooray for Snooky! I had been wondering how you were doing. Congrats on stability!
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Denny, agreed. My onc has been much more proactive than I about reducing dosage. As soon as she identified what she said was Grade II HNF, down went the dosage. At last two meetings, she has agreed that my hands were "better" bit still Grade II, and she was ready to reduce again. I'm not ready for that, as I'm managing reasonably well. She noted that I could suffer irreversible effects if I stayed at too high a dosage, but I figure that progression is a scary thought, too. I'm for sticking where I am for now. My rambling and rather incoherent point is, Sandi, I'm glad you did what you did! Just be vigilant and figure out what works for you. Good luck!
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Thank you for all of your responses and information, My doctor has told me to take another week off and when I start back to eliminate one pill in the morning which will put me at 2500 mg instead of 3000 mg. Not sure this little bit of reduction will help but am praying it does. I agree they start you off with the highest dose possible just to see if you can tolerate it. I feel seven on, seven off would be so much better tolerated as it seems that it is that second week when all side effects get worse. I have scans scheduled for May 13th so will see if the Xeloda is working.
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Charlotte-that sounds good. I started at 2,000 at 14 on, 7 off. I was given a 2 week break, and then went to 7 on and 7 off, and still on 2,000.
And that has worked well for over 2 years.
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Husband, Yes stability is GOOD. First time I've had it in last two years. Thanks for your concern
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I'm done with Madame X, but was on it for 5 years. Never did my MO tell me to stop due to HFS. I just dealt with it for 5 years. No it was NOT fun. I have photos back on page 303, I think.
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Regarding wondering when to call about side effects, it is never wrong to call and communicate. I know sometimes we are afraid of being a pest, or we think there is nothing to be done and we must endure something. But it is better to speak up sooner rather than later. When I was struggling with terrible diarrhea and vomiting at the start of neratinib, I did not realize how significant it was until I did this research, and how I should not have waited for the trial nurse to call me. Here is some info for patients who want to delve into details.
Common Terminology Criteria for Adverse Events (CTCAE) provides standard descriptions of all sorts of drug side effects, and categorizes them by Grades 1-4. See Ctep.cancer.gov Dosage reduction is often linked to these grades, as the pharmaceutical company will advise breaks and dose or schedule changes according to the grade and how many days the patient has experienced the side effect at a particular grade. You can read this on the full package insert or online drug reference.
For hand-foot syndrome the CTCAE version 5, November 2017, definitions are as follows, and the semicolon indicates “or”: Palmar-plantar erythrodysesthesia syndrome Grade 1 Minimal skin changes or dermatitis (e.g. erythema, edema, or hyperkeratosis) without pain. Grade 2 Skin changes (e.g. peeling, blisters, bleeding, fissures, edema, or hyperkeratosis) with pain; limiting instrumental ADL Grade 3 Severe skin changes (e.g. peeling, blisters, bleeding, fissures, edema, or hyperkeratosis) with pain; limiting self-care ADL
So then, we look up any medical terms as needed, in an online medical dictionary. Instrumental ADL means activities of daily living necessary for maintaining a person's immediate environment, like cooking, housecleaning, phone use etc. Self-care activities of daily living are things like feeding, bathing, dressing, toileting. Erythema is redness. Edema is swelling. Hyperkeratosis is skin thickening.
Now, moving on to Xeloda (this is from drugs dot com):
“Hand-and-foot syndrome: May cause hand-and-foot syndrome (palmar-plantar erythrodysesthesia or chemotherapy-induced acral erythema); characterized by numbness, dysesthesia/paresthesia, tingling, painless or painful swelling, erythema, desquamation, blistering, and severe pain. The median onset is 79 days (range: 11 to 360 days). Persistent hand-and-foot syndrome (grade 2 and higher) could eventually lead to fingerprint loss. If grade 2 or 3 hand-and-foot syndrome occurs, interrupt administration of capecitabine until the event resolves or decreases in intensity to grade 1. Following grade 3 hand-and-foot syndrome, decrease subsequent doses of therapy.“
I'm sorry, I can't help it. If digging deep like this is helpful to you, as it is to me, have at it. If not, please don't think you need to. Our main job is to tell the doctor or nurse how we are doing.
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Shetland, thank you. I have copied and pasted this info. My MO was admonishing me for not calling sooner. My heels were red, swollen, painful and very painful to walk on. That is when I called..day 13 of my very first cycle.
But what she was saying, I should have called with earlier symptoms..grade 1 according to your notes. I did call..about fatigue, diarrhea and slight feet redness. The RN asked if I had blisters, I did not. So I continued on the drug. Apparently, I should have temporarily stopped. My MO was livid. She is now sharing the photo of my heels to educate at next staff mtg what grade 3 looks like..not just blisters and peeling.
So thank you for your thoughtful education on CTCAE and definition of grading. When I return for next appt, I will suggest that info needs to go home with all patients starting Xeloda..would have helped me to take it more seriously.
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BRAVO, Shetland! Great, succinct information with explanations of all abbreviations! I typically struggle over trying to sort out what those medical terms and abbreviations mean. This is enormously helpful. Thank you.
Sandi, it’s interesting that your onc and his or her nurse were not on the same page. You were wise to provide the information to the practice for future use with patients newly going on Xeloda. I wish I had had it, too.
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I am on day 11 of my3rd cycle. 2500. My feet are red and it hurts to walk. The last 2 doses I tried ice for 45 minutes after I took the pills- might have helped just due to the ice, vs decreased chemo circulation to my feet. No scaliness or blisters - is this level ll because of the pain?
Hands have some neuropathy at fingertips, but otherwise ok.
I guess I should let my MO know and see if she wants to decrease dose- TMs are way down, but, haven’t had a PET yet.
I am slowly pulling out of severe hemolytic anemia- went 12 days without a blood transfusion- another sign that Xeloda is clearing my bone marrow. Not sure If dosage matters that much if it is working?
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Shetlandpony just recently posted the criteria of HF stages. My MO said to call asap when I develop redness as she would stop Xeloda before HF got worse. She said it would take longer to recover if didn't stop drug at first signs.
We are all different, but I have fast growing liver mets and I would rather take 2 weeks off rather than 2 months.
I know this is a weekend, but I would call the MO on call and inquire if you need to stop that next dose.
Keep us posted..we all learn from each other.
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YES! Call! Even when you stop the pills, they are designed to keep working since they stay in the system. So it isn't like you will suddenly be without any Xeloda in your body.
What has always been explained to me-----when you get an IV every 3 weeks of a chemo, it will work for that whole 3 weeks. But it tapers off near the end of the 3 weeks.
With the Xeloda pills, that is why we usually are worse on our "off" week...because the pills are in our system with an accumulation.
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Can Xeloda/capecitabine pills be cut in half?
Every resource I looked at said do not crush or cut (eg. Rxlist)
Actually Mayo clinic site says if it must be, have it done by a pharmacist.
Thoughts?
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lark, I don’t have an answer for you on the splitting of the pills.
Ladies, I’m just checking in to check in. I started Xeloda in the middle of March and just finished the 4th week of taking the pills with one week off in between each week, so 7 on - 7 off is my schedule. Side effects are minimal at this time. I only hope that this oral chemo is shrinking the mets.
How often do you get bloodwork done? I was instructed to go every two weeks when I began. One reason I think they request it so often is I was coming off of Verzenio and had severe anemia and dehydration. Those issues are resolved. My bloodwork has been pretty good, so I’d like to maybe go less often say once a month.. (My onc does not do the tumor marker testing.)
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Divine, my MO wanted me to do labs every 4 weeks. I refused and said I would do them every 6. Told him I wasn't going to live my life 4 wks at a time. You could go 2 wks now, then switch to 4, due to the anemia. My MO always does TM's, but they are reliable for me, otherwise I wouldn't know what was going on, as I feel great!
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I will start 2nd cycle at lowered dose 2800 and to stop and call if I develop red feet/hands or diarrhea.
Labs, MO followup in 3 weeks. MRI after 3rd cycle.
Anyone else have symptoms similar to IBS (irritable bowel syndrome) when first starting? For example, sudden abdomen distendion/ hard and gradually eased off?
My MO thinks between emotional stress and chemo caused it..never had it before. It is better now.
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I don't know if you can split pills.
I don't have any IBS symptoms or diarrhea. I think emotional distress contributes to it in people who are susceptible.
I do monthly labs for the follow up of Xeloda including TMs which are have been very predictive for me. I have had lots of CBCs recently due to my hemolytic anemia.
My hand/foot is better with the ice during the first half hour after I take the meds. I also decreased the dose myself since my MO was out of town, today she told me to decrease the dose, so will be 2 pills in the morning and 2 at night. she also sent an MSK document on treatment of hand foot which was urea and other types of creams. since I have no scaliness or blisters, not sure it will help. I do use Weleda original ultra rich skin food on hands at night.
HOKA 1 shoes have been a good cushion for walking.
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