All about Xeloda
Comments
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Thanks so much for the info! Has anyone been on taxol? My doc is giving me the choice between xeloda and taxol - oral just seems easier to me but open to any feedback anyone might have!
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KelQ, I haven’t been on taxol, but even with hand and foot syndrome, Xeloda hasn’t been too bad. I have nausea, but I have since symptoms started in my stomach in 2018, so I can’t totally blame Xeloda.
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kelq - My wife was given the exact same choice as you. She chose Xeloda for her first line of treatment and did Taxol for her third line of treatment. She tolerated both pretty well but Taxol was a bit more difficult. This could also be because it was her third line of treatment. The most significant difference by far was the fact that she didn't have to travel to the hospital for treatments for Taxol where Xeloda was just taken orally at home.
I just want to give a BIG YEAH!! to all those that have gotten good reports lately. I'm not posting but still following how everyone is doing. Keeping you all my prayers.
Grant.
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kelq-I have been on Xeloda for almost 5 years. For the first 3 years I had constantly infected toenails and deep cracks in my feet. I finally realized that the fact that I was eating foods high in folic acid, was the reason.
I had eaten big spinach and avocado sales for over a week for lunch and my feet were horrible. My onc wanted to take me off Xeloda completely. But since I had already figured out the folic problem, I changed my diet and was able to go back on Xeloda after 7 weeks.
About 75% of women have reactions to food high in folic acid. I would advise you to google to find the 15 foods highest in folic acid and folate and eat those in moderation.
I had to stop taking my daily vitamins since they have folic acid. And we can not take extra folic supplements or eat blood oranges.
Now that I know what to eat, my hands and feet are tons better. I am still getting enough folic since my levels are normal.
Urea killed my feet and I use Aquaphor at night on my hands and feet, Aquaphor on my feet during the day, and Profoot heel rescue cream on my hands during the day.
I used to use silicone socks at night, but now that my feet are better, I am back to cotton socks. I use food service gloves on my hands at night.
I am constipated and have to take Miralax and 2 stool softeners every evening.
Good luck !
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KELQ- I was on xeloda for 14 months -I chose pills during Covid so I wouldn't have to come into the hospital very often. I have now been on Taxol for 12 months. Both treatments were tolerable-you just have to get the right dosage and schedule for Xeloda that works for you. While Taxol has given me neuropathy in my feet, they feel better than when I was on Xeloda since I can't feel them now! I got a port and the infusion of Taxol only takes an hour plus setting up time. I graduated to 2 weeks on and one week off which helps with overall side effects. You do spend more time in the clinic/hospital with Taxol.
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Thanks to those of you who replied to my inquiry. After weighing the options and seeing the big university hospital MO, I'm choosing xeloda over taxol. I had colon surgery a few years back and have some diarrhea at baseline, so I hope I can keep it under control. Worried about HFS, but will follow all of your tips! University MO says after the big conference in December, some new drugs will roll out. I will be a good candidate for Elacestrant when it gets here so hopefully Xeloda will serve me well (enough!) and then I will have that available if/when it fails. Possibly enhertu down the line as well since I'm low HER+. Hope you all had a Happy Halloween & are enjoying a beautiful fall day if you live in the north!
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Finally got my first bottle of xeloda. I didn't realize it was going to be 8 gigantic pills a day, 4 in the AM and 4 in the PM. Any tips for getting those down?
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kelq, imo, the pills go down pretty easily, altho my dosage is 2 in the am, 2 in the pm. So maybe take two at a time. Just have a tall glass or bottle of water when you toss those pills to the back of your throat.
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My husband takes anything large with milk. He has a tough time swallowing medication. I just toss the three Xeloda pills in and take a sip of water and down the hatch. I’ve not really had trouble taking any big pills. Maybe you could try the milk idea. I can’t even watch him if he’s taking something. It messes with him.
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Thanks Divine & kbl - I was struggling with it mentally, but I survived my first 2 doses! Now my mental space is taken over by snow in Chicago :-)
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kelq, glad the pills are going down okay. Yikes to the snow!
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kelq-glad that the pills went down okay. I never have a problem taking them with a glass of water. I have constipation, so no diarrhea here. I have been on Xeloda for almsot 5 years.
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Hi.
I don’t post here often but lurk a lot and know there are a lot of great brains here So hope you don’t mind my butting in with a question I may cross post on liver Mets thread too Hope that’s ok
I just received my scan results. The first Pet/CT since 10/21 (I had am MRI in February after liver Mets appeared after 2.5 years of bone only on Ibranxe + Faslodex) my marker numbers have been going down so my doctor didn't seem to see a need for a scan (maybe that was a bad idea??)
I won't speak to my doctor until Monday. So would love to gather some of your thoughts so I can formulate questions before then Especially from ladies living with liver and bone Mets for awhile.
I have had a good year on Xeloda and am living a normal life. Before this scan, My doctor said if the results were mixed we might try zapping the liver and any new bone spots and stay on Xeloda. But not sure that really works? If new spots are showing up does that mean treatment isn't working? Or does the fact that other areas are decreasing mean I can eek more mileage out of current treatments?
I so don't want IV chemo (not that anyone does…hope that’s not whining). So maybe a trial? Or maybe stay on Xeloda a bit longer? Does upping the dose help? I am on a low dose right now compared to some—1000 2x day. .
Anyway here is what the summary of the report says. Maybe some of you longer-timers can give perspective and questions I can ask…or share your experiences? Has anyone tried radiation on rogue spots when other places are resolving and stayed on current treatment?
"Compared to 10/20/2021, decreased hypermetabolism of previously described right hepatic dome metastases and known osseous metastases (ie. manubrium, right sacrum, left iliac, and right humerus). However, new and increased extent of hypermetabolic osseous (ie. sternum and left humerus) and hepatic metastases (as indexed above)".
Thanks so much!
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pbsoup...glad to see you post! I don't have bone mets, but had extensive liver mets in 2004. A decrease in liver mets is great, and maybe increase your Xeloda dose a little for the bone mets?
I am one month away from my 21st year of Stage 4 MBC de novo, and have been on IV chemo and treatment the whole time. So chemo doesn't bother me.
I have been on Xeloda for almost 5 years and it has kept me stable. I have found that my HFS is greatly reduced by avoiding foods high in folic acid and folate.
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I received the results of my latest CT scan yesterday, of my chest area. My onc was worried about my heart function so was concentrating on that area, and did not scan my liver. (darn it).
Anyway, all areas look good. I do have some spots in my lungs that are not considered to be mets (hopefully).
Still fighting to figure out my hypoglycemia and orthostatic hypotension, and unsure what the heck to eat anymore. Tons of tests have turned out to be fairly good.
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Denny
Thanks for your response And am glad your tests are not showing progression!! Never a dull moment!
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Pbsoup- I don't have liver mets - so I would not comment on that progression- sounds like you may need a second opinion re the liver and Susan 's info re local treatment of it is well researched.
I did have a few isolated bone mets that progressed on Xeloda and had them zapped and was able to stay on Xeloda longer. My TMs went back down etc and PETs showed they were no longer active. I was on 1000 twice a day also. My MO said if the medicine works for you usually upping the dose doesn't help with a progression. I started getting anemia and pain and TMs starting rising quickly- PET was still pretty quiet- I changed to Enhertu- which is IV ( I resisted it mightily) and bone marrow and pain and TMs all improving.
Let us know what MO says.
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thanks NKB. I too am curious what MO will say. And take Susaninsf seriously as she has done her research. how is enhertu going v with side effects? I am HER2 low so it’s a possibility but my MO wasn’t as convinced. And some women find it rough. That said often those who post about side effects are just those who have problems. The ones who tolerate something well don’t bother to mention it.
Will let you know what MO says. I’m supposed to travel to India for work next Sunday for 10 days so the timing to sort this throughwith holidays etc. couldn’t be worse. Pity cancer doesn’t use Outlook or even Google calendar!
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PBsoup- they need to write those important travel details into their code for google and Outlook!.
I have very few issues with enhertu. I know if you read the Facebook page- all sorts of people are suffering terribly on it. I get pre- meds, take the zofran twice per day for 2 more days and then use ginger if nauseated. first month had GI issues and they are either gone or I have changed a few habits to avoid them (reflux ) definitely have constipation which is not unusual for me- I think the transit time is slowed down- which would explain the fullness feeling people get. I sleep well the first week, may even need a nap, then some insomnia. I exercise daily. Hair is thinning even with the cold caps- about 30% I think. I do feel some new growth. I have heard-no hair loss, totally bald, shedded for 2-3 months then started to grow back- So not sure how that will play out as more people take the drug.
My TMs went up after first infusion and my hemoglobin went way down, but, all reversed after cycle 2 and 3- ANC is not robust, but, enough to continue. low WBCs.
The data for Her2 low is quite good in Destiny 04- the numbers were small and more will be known as it gets used widely.
I hope that your trip is wonderful!!
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I’m experiencing HFS from xeloda and itseems many of you have had success when you’ve reduced your folic acid intake. I’m curious what foods you generally eat. The list of high folic acid food are what I think of as “healthy” foods so I don’t know what to eat instead.
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NKB--Just wanted to loop back on what MO recommended for the record. Will x-post in liver thread too.
Because of my travel, to tide me over I will up the dose of Xeloda by 500mg (already did, HFS has gotten worse...what fun) until I get back and can have a liver biopsy. Once we do that, I will either stay on the higher dose to see if I can eek some more time out of Xeloda, maybe do an ablation or Y=90 to the liver, while we look at next treatments.
Very possibly Enhertu. I will also ask about Aromasin/Afintor. Not sure how super effective those are, but want to see if I can avoid infusion a bit longer. I worry about Enhertu side effects but it sounds like yours aren't too bad. I am pretty robust and active so wonder if that makes a difference in how hard hit I would be?
We also discussed going to Stanford or UCLA for second opinion and to see what trials I qualify for. I have family in Oregon so OSHU is another thought.
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PBsoup- sounds good- except the feet. I like to eke whatever time I can before switching. I really hate that it is an infusion and the hair loss- other than than it is pretty easy. I go to the lab less than with Xeloda-
getting a second opinion is a comfort if there is more than one option- I have gotten a few at UCSF, but, not from Hope- I was told the wait would be very long.
Have a great trip!
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lginnyc....this is what I devised through a ton of research... We can eat beef, pork, chicken, fish (not mollusks) , pasta, potatoes, green & yellow beans, peppers, tomatoes, peeled cucumbers, onions, carrots, squash, iceberg & red lettuce, apples, pears, peaches, watermelon, plums, dairy, yogurt, tortilla chips, pudding, ice cream, V8, Junk food.
And I just added nuts to my list since I need those for my hypoglycemia. The nuts that are the lowest are...macadamias, pistachios, pecans and almonds.
My lunch is always a big salad of iceberg lettuce with radishes, cukes, onions, tomatoes, peppers, cheese and chicken or roast beef lunchmeat. I pretend that the iceberg is my former dark leafy greens....sigh.
And when my feet are really bad, I use Aquaphor with silicone socks at night. Then I put cotton socks over the silicone to keep them on.
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kbl and denny123 and divinemrsm and anyone else who would like to comment,
I developed progression in my liver and spine after 8 weeks on Everolimus and Fulvestrant, so I will be starting Xeloda in a few days.
My Dose will be 1500mg 2x/day. My starting Schedule will be 14 days on then 7 days off (when blood tests will be done).
What Dose and Schedule did you start on? (I realize dose may vary as it is based on a wt/ht calculation).
Have you had your Dose reduced due to side effects? If reduced, to what Dose?
Have you had your Schedule changed due to side effects? Apparently a typical cycle is 14 days on/ 7 days off, but an alternative is 7 days on/ 7 days off.
I've compiled a list of lotions/ointments that have been recommended on this site. I'm going to start with Udder balm, Aquaphor, and Weleda. I'm considering silicone socks and I've also found moisturizing gel socks on Amazon for at night. I need a good walking shoe so I can keep up my daily walks, and have been looking at HOKA 1 shoes and notice that Brooks has a glycerine shoe.
My oncology pharmacist mentioned that mouth sores are a possibility. Have any of you had this side effect? I still have a supply of dexamethasone mouth swish solution from being on Everolimus and wonder if continuing to swish once a day might be useful.
As recommended by denny123 I plan to evaluate my diet for high folate or folic acid foods. I recently had a Vit B12 and folate bood test. My B12 level is with-in normal limits, but my folate blood level is high and I don't really know why as I don't take it as a supplement.
Thank you
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weninwi, I am on a 7/7 schedule and take 1500 am and 1500 pm. I’ve been on the same dose and schedule for the whole 14 months. My hand and foot is there but not severe.
As far as mouth sores, I got plenty of them when I was on Ibrance but none from Xeloda.
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wen, I was started on and remain on the 7 days on, 7 days off schedule. I have a reminder on my phone that goes off at 8:30 am and 8 pm to take the medicine, otherwise I would forget to take it way too often. I started taking three pills in the morning, three in the evening, i believe that was 3000 mg a day, and did that nine months. Hfs increased over that time, became a problem. and the dose was reduced to two pills in the morning, two in the evening. I have remained on that dose since then. All told, I’ve been on X for over 2 1/2 years. I’ve never had mouth sores on any treatment, including X.
I honestly don’t monitor what I eat to a large extent. My issue is more with high cholesterol and blood pressure, so I try to be mindful of salt and dairy intake. I’ve never been much of a drinker but will have an occasional margarita or celebrate New Year’s with a glass of champaign.
I’ve used a variety of creams and lotions. I found the urea to exacerbate the hfs. What’s worked best for my feet is first applying a thick lotion, like Eucerine, then over that, vaseline, before putting on socks. During winter, my hands especially are much drier so I keep lotion handy and apply often.
Overall, X has been a tolerable treatment for me, and I hope the same for you, too!
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weninwi....I started out at 2,000 a day at 14/7, but when my feet and hands got bad after a few weeks, I was changed to 7/7. But now I know that it was caused by my high-folic diet. Since I ate a lot of the high-folic foods, I am sure that my folic level was very high. Now that I am watching what I eat, my folic level is normal.
I am now on 2,500 a day since I developed a spot on my liver when my onc took me off Xeloda for 7 weeks since my feet were so bad. But the higher dose is tolerable since I watch my diet. The spot has been stable for a year and I have some spots in my right lung that are indeterminate.
I also found that anything with urea made my feet worse, since urea is an exfoliant.
I don't have mouth sores, but my gums are sensitive and bleed often.
The moisturizing gel socks from Amazon worked okay for a while but they got very stinky, even though I washed them every morning.
Now that I possibly have hypoglycemia and orthostatic hypotension, my diet is supposed to include the high-folic foods, so that has been a problem that I really don't need right now! I will see an endocrinologist in a month.
I have been on Xeloda for 5 years.
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weninwi, please keep us posted.
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When do you take your Xeloda?
The instructions that come with the drug say in effect to "take w/i 30 minutes after a meal with water".
This instruction was repeated to me by the oncology pharmacist at the specialty pharmacy that will provide the drug to me.
However, the oncology pharmacist at my cancer center said she doesn't understand why the instruction is written this way. She said just take the medication twice a day with a meal - 10 to 12 hours apart - like at breakfast and then supper.
When do you take your Xeloda in relation to a meal?
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weninwi, I can never seem to take mine 12 hours apart. I eat breakfast between 7 and 8 and dinner between 5 and 6. I do take a half hour after.
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