All about Xeloda
Comments
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lanne, I’ve been on Xeloda a couple years and did not notice any immediate change in how food tasted. But my tastes have changed somewhat over time although I’m not sure I can attribute that to Xeloda but it sure could be possible. These days, I seem to like food that has a bit more zing, for example, sharp cheddar cheese rather than mozzarella. I like to try new foods to see if there’s something that excites my taste buds. Some food I used to tolerate but don’t care for as much now like scrambled eggs.
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Kelly,
Are you on the 14 days on /7 days off schedule or the other commonly prescribed 7/7 schedule?
I'm not happy that my MO does not test for tumor markers, so I won't know if the drug is working until next scans in 3 months....but I'm hopeful as many women who have been on this treatment have gotten a good response of various durations.
Wendy
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Wendy, I'm on 14/7. Hadn't heard of 7/7 regimen until I read it here. If side effects continue like this, I'm going to ask if it's a good option for me. Also saw your comment about mouthwash. My MO recommended Prevention and advised me not to take the dexamethasone mouthwash that I had leftover from Affinitor. I didn't tolerate Affinitor very well and was only on it a short time, so have almost a full bottle left. I see an oncologist in my community and one down at Northwestern in Chicago. The bigger hospitals tend not to follow tumor markers. I guess the end result is a PET scan regardless. Take care, Kelly
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weninwi....multi vitamins have folic acid so I had to stop taking them. And I have always been told not to take E, hi-dose C, or zinc.
Lanne-For my 5 years of Kadcyla, coffee tasted bad and now I can only drink dark-roast. And that has continued with Xeloda.
Same thing for artificial flavorings, like apple-cinnamon. And coconut, which I have always loved. They now taste yucky.
Otherwise, everything else is okay.
I am in PA and it is now a balmy 0 degrees with a wind-chill of -25!
Happy Holidays everyone!
Denise
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denny,
What do you know about Vit B6 pyridoxine to help reduce hand-foot syndrome side effects? I just learned about this from the pharmacist at Accredo, the specialty pharmacy that provides my Xeloda.
Wendy
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weninwi-I have been taking B6 for my 5 years of Xeloda. But I don't know if it helps at all. Foods high in folic acid caused all of my problems.
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hi All,
I need to talk about poop. I’ve had diarrhea now for 11 days - it hits in the evening/most of the night after a full meal. I’m ok during the day so keep thinking it’s over and then it strikes again. Imodium doesn’t help. Went in today for blood work but I didn’t see anything too different from other tests. The Dr is perplexed that it started during my off week and has continued while I’ve been off Xeloda. She said I might have an infection or a bug, or something about pancreases not working correctly - which scares me since I had pancreatitis in February (0/10 do not recommend). I have to take in stool samples tomorrow - so much fun.
Has anyone else had diarrhea go on this long?
Lanne
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denny,
Here's the answer I got from the oncology pharmacist, who works with my MO, regarding Vit B6 for H/F syndrome symptoms:
- Data out there can be confusing, but a reputable journal (confirmed in 2017 trial) JAMA concluded: Pyridoxine did NOT significantly prevent or delay the onset of grade 2 or higher HFS. Serum and red blood cell folate levels are independent predictors of HFS. So, we therefore do not recommend this for treatment or prevention of HFS routinely.
That info, coupled with your personal experience with Vit B6, convinces me not to start a B6 supplement. I also give weight to your experience of avoiding foods that are high in folate or folic acid, so will do the same. So far, near the end of my first cycle, I've not yet had significant HFS symptoms.
lanne,
I'm near the end of my first cycle 14/7 and my stools are definitely softer and more frequent, but no outright diarrhea. However, my MO did mention to me that diarrhea might occur.
The written information I got from Accredo, who supplies my drug says this: "Diarrhea may occur and could be severe. Stop taking capecitabine and tell your doctor right away if the number of bowel movements you usually have per day increases by 4 or more, or if you have bowel movements at night."
If it were me I'd be asking my MO what the recommended action is for severe diarrhea due to Xeloda. I think these drugs usually have recommended actions based on severity of side effects i.e. grade 1, 2, 3, 4. Actions like hold dose or reduce dose or ?? until resolved.
I'm not really sure to what extent other interventions like Imodium (anti-motility) or Konsyl (my preferred bulk fiber) are also encouraged to mitigate this side effect.
Hope you and your doctor get this figured out soon.
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lanne,
I found this statement on the Memorial Sloan Kettering website on their Capecitabine fact sheet, which addresses treating the diarrhea that may result:
- Diarrhea is common with this drug and can be severe. Call your doctor to find out what to do if you have diarrhea or stomach cramps. You will need to take care not to become dehydrated. Do not try to treat diarrhea without first checking with your doctor.
There are other Xeloda fact sheets on the internet, including a very complete one on the Genentech website:
https://www.gene.com/patients/medicines/xeloda
I'd encourage you to check back in with your doctor, given that severe diarrhea is a known side effect for Xeloda.
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To All,
I very recently learned that the FDA has updated the prescribing information for Xeloda.
Source: https://www.empr.com/home/news/xeloda-labeling-upd...
"Additional revisions to the Xeloda prescribing information include:"
- "Updates to several dosage regimens, including an option for a lower starting dose for patients with metastatic breast cancer."
From the new label:
"Recommended Dosage for Breast Cancer Advanced or Metastatic Breast Cancer Single Agent"
"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.
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Wendy - thanks for info on new Xeloda dosing. I'm on 2500 mg twice a day so a reduction to half that sounds wonderful to me. My PA said initially that dosing was (also?) based on weight but I haven't seen that mentioned.
As for my diarrhea fiasco (things letting up a bit), tests show no intestinal bugs but very elevated lipase levels which likely indicates inflammation in my pancreas. My routine CT scan is scheduled for Feb - the radiologist also watches my pancreas, since my pancreatitis attack on Feb of this year.
Lanne
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lanne,
I've only recently learned that Xeloda dosing is based on body surface area. Math is not my strong suit, but this is what I found.
Height and weight are put into a formula to calculate a person's body surface area. This is the one I used: https://www.calculator.net/body-surface-area-calcu...
You put in your height and weight and it will calculate your body surface area which is a "number m2". There are several different formulas that can be used - you'll see the list. My cancer facility uses the Mosteller formula so my result is 1.62 m2. Whatever your m2 number is, that's the number that gets multiplied by Xeloda's dosing guidelines......1250mg/m2 or 1000mg/m2.
If my doctor had followed the 1250mg/m2 dose I would be taking 2000mg twice a day. If she had followed the 1000mg/m2 dose I would be taking 1600mg twice a day. But I'm taking 1500mg twice a day, which seems to be an under dose.
I have trust issues with my doctor, and have a hard time asking questions without her getting put off.
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lanne,
Glad to hear your diarrhea symptoms have calmed down.
I've only recently learned that Xeloda dosing is based on body surface area. Math is not my strong suit, but this is what I found.
Height and weight are put into a formula to calculate a person's BSA body surface area. This is the calculator I used: https://www.calculator.net/body-surface-area-calcu...
You put in your height and weight and it will calculate your body surface area which is a "number m2". There are several different formulas that can be used - you'll see the list. My cancer facility uses the Mosteller formula. Whatever your m2 number is, that's the number that gets multiplied by Xeloda's dosing guidelines......1250mg/m2 or 1000mg/m2.
At least this is my grasp of it, although my understanding should be double checked.
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weninwwi...thanks for that. My onc started me on 2,000 daily at 14/7 until my feet got red (right away). He never prescribes over 3,000 a day for anyone, no matter the weight.
His criteria for me was that I had been on chemo for so long.
When I presented with a liver spot I begged to go up to 2,500 a day at 7/7.
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denny,
I was somewhat concerned that I might be a little under-dosed at 3000mg/day, so it's reassuring to learn that your MO never prescribes more than 3000 mg/day regardless of ht & wt.
I got no benefit out of Everolimus + Faslodex and had significant liver and bone progression, so I'm hoping Xeloda works for me.
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weninwi....I really hated Faslodex and had it with Kadcyla. When I started to get lower back spasms, I asked to quit the Faslodex. But the spasms have continued.
3,000 is a lot, I think. I cna't believe that some ladies have to get 5,000.
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I recently started the generic form of Xeloda, Capecitabine. Does anyone know of a copay assistance for the generic?
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kglee, I use Good Rx for my Xeloda/capcetabine prescription. With my Medicare Advantage plan, it would cost hundreds of dollars each month, so I use a Good Rx coupon *in place of* insurance and only pay about $46 for 56 pills. You can check out their website. I find it pretty easy to use. I called a local pharmacy beforehand to ask if they took Good Rx coupons and they said yes, and I’ve been getting my prescription filled there for several years. They just kept the one coupon information on file so I don’t have to show up with a new coupon each month. Here’s the website link:
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DivineMrsM, I also have a Medicare Advantage, and Cape is covered under Part B because it's considered chemo. I pay $15 and change for 84 pills. I just wanted to let you know.
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Thanks for the info. I do not have Medicare yet. I have Cigna. It's funny we are allowed to use Good RX on everything but speciality drugs. I have a $6800 deductible. On other rx, like Ibrance, I was able to use the copay assistance program and it would apply to my deductible. Not finding anything on capecetibine and my cost with Cigna is $2100. I am trying to weigh the cost of not going through insureance and use Good Rx. So if no assistance with drugs, looks like there is no way around it. With all the scans and doctor appointments, I am sure I'll meet my ductible by February.
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kglee- I am on Medicaid and my chemo center submitted a "coupon" to the company. So I get it for free. I would ask about that coupon since other ladies that I know who don't get Medicaid, also got it for free.
I have been on Xeloda for 5 years and for the first 3 years, my toenails got badly infected. Turns out that most of us have to eat foods that have moderate or low folic acid. Since I learned what not to eat, my hands and feet are so much better. Just an FYI.
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kbl and others taking Xeloda,
I have finished my second cycle of Xeloda. I take 1500mg 2x/day on a 14 days on/7 days off schedule. My blood work after the first cycle was OK. But my blood work after this second cycle shows an elevation in Red Blood Cell morphology i.e. RDW CV and RDW SD. I'm not familiar with this indicator of wellness/problems as my values have always been WNL. What I read is that elevated RDW may indicate anemia and deficiency of iron, Vit B12 and folate. I developed low Vit B12 while on Verzenio, so this possibility concerns me. I see the PA, who works with my MO, tomorrow so I will definitely ask questions.
My main side effects so far are fatigue and increase in my neuropathy, which had been very mild, but now I feel like I'm walking on blocks of wood.
kbl, I remember you mentioning that you would remain off Xeloda for an extra week to allow your blood work to recover and that your doctor eventually switched your schedule to 7 days on/7 days off. Was it your Red Blood Cell morphology that was affected by Xeloda? Did going to 7 on/ 7 off help reduce the negative effect?
I'd welcome any comments by others on Xeloda.
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weninwi, I've not been off Xeloda at all in 15 months and have always been on the 7/7 regimen. I've had anemia since way before my cancer diagnosis, not having anything to do with iron levels, but my RDW has been in range. I believe it's because the cancer is in my bone marrow. Lately, my RBC has risen but is still below normal. You're saying that your red blood cell numbers are above normal? I'm not sure what that could be.
I would definitely ask if that can be a side effect of the Xeloda and what to do about it.
I'm sorry, I'm not much help on your question. I do have other numbers in my CBC bloodwork that have always been elevated on any treatment I'm on, but they are not concerned.
Please keep me posted on what you find out.
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I had an appt last week with a cardiologist’s nurse practitioner due to high blood pressure (and elevated heart rate) which runs in my family. She put me on BP medicine and today I went for what’s called a pharmacological stress test. I had to fast for 12 hours, then they injected a medicine to make my heart feel like I had been exercising. After it was injected, my BP tanked. It was very unpleasant. I almost passed out. They had to give me a couple bags of saline thru the iv and I came around. Geeze. I am both glad to be getting my heart checked out since four of my siblings have had heart issues, and I’m also nervous to learn what the tests show. In my mind I’m young and healthy! I cannot believe now I’m seeing a cardiologist along with an oncologist.
Weninwi, my RDW CV always runs high, even on other treatments. Currently, my other bloodwork results are normal. I started out over two years ago on the 1500 mg twice a day, 7 days on/7 days off (never did the 14/7 day schedule). After nine months, my hands really hurt and my feet were sore. It was interfering with my quality of life so I was cut back to 1000 mg twice a day, 7/7 which I am still on.
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divinemrsm,
Thank you for the update on your Xeloda dose and schedule. I saw the PA today who said elevated RDW values can indicate Vit B 12 and folate deficiencies. I've had low B12 in the past, so my PCP has ordered B12 and folate levels. The PA was concerned about the increase in my neuropathy symptoms and said the MO might lower the Xeloda dose slightly or change the schedule. But low B12 can also result in neuropathy symptoms, so not sure what the outcome will be yet.
Boy, your pharmacological stress test sounds very stressful. Hope the findings are not serious and can be managed.
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wen, so interesting to hear of the B12 and folate. I am going to get a low dose supplement and see if it has any affect on my blood cells and anything else!
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Anyone heard from Joyner1? (Lynne ). she was on Xeloda for about 3 years and gave lot of helpful advice- switched to Afinitor and not logged on in months. I get worried when people disappear.
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My B12 and folate levels came back within normal limits, in fact both are at the high end of normal, so I'm absorbing B12 and folate from my food. My MO followed up with a MyChart message and said since B12 and folate are WNL, then the RDW CV and RDW SD elevations are probably due to the Xeloda. She wants me to stay on the initial dose & schedule of Xeloda until my next scans on Feb 6 and depending on the outcome she may make adjustments then. I'm OK with this. I hope Xeloda is working. I really appreciate having others on Xeloda to share with and compare notes.
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devine-check with your pharmacist before taking a folic acid supplement. B12 would be okay, if your levels are low. The literature with my Xeloda pills said not to take a folic acid supplement. B12 should be sublingual for better absorption.
Although i am watching my foods with folic acid, my folic levels are still normal.
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nkb - I think about Lynn often as she and my wife Liz started Xeloda about the same time. I also worry when people disappear from discussions.
I reached out to Lynn and I hope to get a response.
Grant.
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