I know there’s been posts recently about Xeloda but I can’t find the ones I’m looking for
I’m just on my second cycle of Xeloda and was doing fairly well with regard to side effects until the last few days
My feet are so red and sore...just walking a few steps hurts..I have been using the udder cream with urea and have ordered some gel inserts for my shoes...I’ve also messaged my oncologist to report....she’s told me to stop treatment for a week....good job I didn’t continue!!!
Thought I’d share!
Barb xx
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Barbteeth
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Sorry to hear you are suffering with sore feet on Xeloda.
I’m just starting my 2nd week of my 1st cycle - so far I’m ok. I’m a little anxious about getting sore feet and hands as I do already suffer from pompholyx eczema that affects the feet and hands from time to time ....
It was my close friend, Anna’s funeral today in Cheltenham. It was a beautiful service.
So sorry you are experiencing another challenge. It seems as if there have been a lot of messages in the past about the issue with xeloda and painful feet. Maybe after your break with your treatment you can restart at a lower dose. It seems to me that I remember that being suggested at some point or other.
I am so glad to see you on the board. I always look for your posts. I'm just sorry that it's about something painful. I hope Bugsy is doing well and that you still get to see him from time to time.
Hi Barb, so pleased to see you on the board even though it is to report painful feet with xeloda, it seems to be a common side effect. Will you manage to see your daughters over Christmas or are you all in high risk areas? We shall see our 2 groups here but for a distanced lunch on the 27th only. Watch this space! Weird times aren't they. Thinking of you, Fayx
Hi FayYes my girls and husbands are coming to me for Christmas...as you say it’s all wierd this year but I’m thinking this could be my last Christmas ( being realistic but morbid) so I want us together...I’ve never missed one without them...upsets me but it’s only a day after all
Hi Barb. I know exactly what you mean. I try to do things that help me forget my situation, eg reading, Montalbano, Strictly, chat to friends etc. All so difficult especially with Covid. Enjoy your family, they are so special and lift us up don't they? Fayx
So glad to see you back posting Barb !! Hope you can find something to work on alleviating the side effects of Xeloda . Did you go for your ride on Bugsy ? The last post I saw from you , you where planning on going for a ride.
My hand foot syndrome is finally clearing up after a few weeks. Mine got really bad during the 2nd cycle, too. Hard to walk, and couldn't even turn doorknobs. It also spread to my forehead, nose, and left cheek. Doc put me on hydrocortisone ointment 1% for the hands & feet, and Vaseline for my face. They're helping. I was temporarily taken off xeloda, and will resume at a lower dose this Monday.
Sounds similar to my reaction...I had been for a swim but doubt that triggered anything...nice to have a break for a week and doubt that will mess up the treatment I’ve ordered more underlying cream with a higher % of urea...never thought of Vaseline!!...cheaper as well
I’m on the 6 a day dose, one week on, one week off...on my 4th round now and haven’t yet had the hand/foot problem....and the drug seems to be working!! Maybe a lower dose IS the key! I hope you all find the dosage and frequency that fits...side effects can be so demoralizing. I’m going to be thinking of you all, and using more lotion!
Sorry to hear about your side effects , hopefully they will lower your dosage and it will be effective for you . I don’t understand why they start high and then lower ( there must be logic to it , they are Specialist ) I always think start low and if it is tolerated well then slowly increase to an effective , tolerable level?? ? But I am a florist lol not a dr.
I asked my oncologist why she starts me at the highest dose. First Ibrance, Everolimus, and now Xeloda (3000mg/day). Her answer was because she wants me on the dosage that was used during the trials and subsequently approved. When I get bad aide effects, then she would reduce the dosage.
My doctor did the same but was not at all reluctant to reduce dosage. Because the trials are partly about testing for toxicity (safety), the trials naturally try the max. But there’s no evidence that lower doses are less efficacious. I was on ibrance 100 for way past the average PFS. I wonder, and have seen others wonder why they don’t start us on lower doses and work up to the higher. I started Piqray on Oct 23 and was really bent out of shape for two weeks...lost 13 pounds. I feel better now, but still!
Barb, So good to see you here. We have missed you. You are an integral part of this group.
Sorry you are experiencing these side effects, but I think most women on Xeloda have experienced those side effects with cream being helpful. Maybe you can ask your onc to lower the dosage.
I hope you find relief as you have had a difficult go of it.
I get the same foot problem. It feels like I’m walking on rocks with bare feet. I have been using Udder Smooth on my feet morning and evening..I sleep in socks at night after putting it on and it seems to be helping. But I mostly get it for the last three days of the 14 day cycle and then it goes away. I just try to stay off my feet during that time. My feet always look red now. Elaine
Hi Barb. I was on Xeloda for 5 months. I was on 8 pills a day - 4 in the am and 4 in the pm and quickly reduced to 3 in the am and 4 in the pm by my second cycle. I had walked 14 days into my cycle (first month on Xeloda) not realizing that my sneakers which never caused blisters before did have some friction - enough to create horrible blisters all over the bottom of my feet by the time I got in from my walk. My feet were on fire and for 4 days I sat with ice cubes under my feet. That being said, I never wore those sneakers again and moved onto a looser fitting pair. How I manage Xeloda was by making sure I had a yogurt each morning before taking the am pills. I drank huge amounts of water thru the day. When I moisturized my feet at night - I wrapped my feet in plastic wrap prior to putting socks on to prevent my socks from absorbing the cream. This makes a huge difference with retaining the moisture. I used Udderly Smooth moisturizer - recommended by my onc and sometimes I topped it with plain old vaseline prior to my plastic wrapping. As for my hands - I sometimes would moisturize them and put soft cotton hand gloves purchased from amazon on prior to bed. Stay out of the sun on xeloda and keep heat (hot water) off feet and hands - so careful washing dishes.
Sorry you are going thru this. Sorry we are all going thru this.
I didn't show any improvement with Xeloda for 4 cycles. By 5th Cycle TM's shot up - scan was done and progression was shown. Now I am on my 5th treatment in 3 years which is DOXIL - IV chemo every 3 weeks. It has been alot easier then Xeloda and God willing will remain this way. I will know this month if it is working for me. Fingers crossed and prayers please that it is.
Hi Barb, I know how painful the hand foot syndrome is. In addition to the good suggestions already mentioned I found wearing cushioned socks really helped. I would wear them with cushioned inside running shoed.All the best.
Barb, so sorry to hear you're dealing with Hand-Foot Syndrome from Xeloda (capecitabine). I was wondering whether you may have considered speaking with your doctor about reducing the dosage? Below are some studies indicating that a reduced dose of Xeloda is as effective as the standard dose while precipitating less severe side effects.
Hope you feel better soon!
An analysis of dose modification and outcomes from four Phase II capecitabine monotherapy trials, one Phase III capecitabine/docetaxel combination trial, and an analysis of consecutive MBC patients who received capecitabine outside of a clinical trial concluded that reduced capecitabine doses were associated with a lower incidence of treatment-related adverse events, specifically hand-foot syndrome, diarrhea, and stomatitis. Furthermore, time to disease progression and overall survival were similar, or even slightly longer, among patients who received lower vs. full-dose capecitabine in all of the studies reviewed. Together, these data support the practice of dose-reducing capecitabine, including the possibility of starting at a lower dose (<1250 mg/m 2 twice daily), to reduce the incidence of adverse events without compromising efficacy. clinical-breast-cancer.com/...
At the University of Southern California (USC) hospitals, capecitabine is routinely prescribed at dosages as low as 600 mg/m2 twice daily, with a majority of MBC patients receiving a flat dosage (not adjusted for BSA) of 1000 mg twice daily. In a review of 84 patients who received a median capecitabine dosage of 565 mg/m2 twice daily, the median PFS among the 62 patients with measurable disease was 4.1 months), which was similar to the median PFS values (4.4 months; 4.2 months) for single agent capecitabine reported in the two major trials with similar eligibility criteria. Furthermore, only 2 patients (2.4%) discontinued capecitabine due to toxicity, supporting our hypothesis that starting treatment at low dosages minimizes side effects while preserving efficacy. gotoper.com/publications/aj...
Hi thereI sent my oncologist a photo of my feet and she stopped my meds for a week...trying the one week off/on regime to see how I fare...the feet were normal the day after I stopped
So sorry to hear of your painful side effects. You are very brave and so strong trying everything to help you. Keep safe and stay positive. Enjoy your Christmas. Xx
I’m not brave or strong...for the length of extra time you may get on a drug is it worth putting up with horrid side effects? I’m starting to feel like I want to refuse treatments...really had enough...and who benefits?... not me!Sorry but this is how I feel today
Oh Barb, I know it’s hard, and many days we feel like giving up but deep down we still hope and cling onto life. You are brave because you are still searching and trying to find something to help you. Don’t be hard on yourself. Thinking of you and sending positive thoughts. Xx
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