Xeloda -- foot care

Chantellep

Hi Xeloda users! 
This might not be news, but it was news to me so I thought I'd post it. I've been taking Xeloda for nearly five years, so have tried many potions and pastes on my feet to keep them walkable. For the last couple of months I've been using emulsifying ointment PB (paraffin wax with no flavours, colours or smells) with success; there has been less swelling and redness, no cracking and bleeding, and less peeling. I've been able to walk kilometres instead of just metres, so I'm really pleased! I was so confident that I tried some sexy boots but that was a setback after a night out, so it's back to the soft lace-ups, but my feet are still so much better. Hope it helps others too.

SoldierCrab

@Chantellep
 thanks for sharing this will be good information for those on Xeloda

Afraser

I'm not on Xeloda but hot (well, warm)  parrafin wax treatments on my neuropathied feet are terrific. 

wendy_h67

I was on xeloda a couple of years ago, and have heard since how well it wotks.  Wish I knew at the time as my feet became cracked and bleeding.  It was one of the reasons I had to come off Xeloda.  I have let others know since I have heard of its success. Good for you being on it for so long. 

wendy55

Hi thanks for the tip, I have been on xeloda for 20 months and it has been a VERY challenging time,so very happy to hear from someone who has been on this drug for 5 years, good on you!! I have tried various creams and potions but have finally found one that is a one stop treatment, its called DERMAVEEN bath and shower oil with colloidal oatmeal and is the best thing for me, I put about 20ml into a running bath and then just soak in it,like you I have trouble with what type of shoe I can wear due to friction, so anything fashionable is out the window, my hands have actually caused me the most angst, I have to wear white cotton gloves to drive and I have a cleaner once a fortnight to do the vacuuming and washing the floors, gardening also is out, however all is not lost, the drug is doing its job and my tumour markers remain low and 4 of the 6 tumours in my liver have "disappeared", so I will keep on xeloda until things change, but again so very very happy to hear from a 5 year user of this drug, you are the first person I have had the opportunity to "chat" to, perhaps you could let me know about your diagnosis,

wendy55 

Chantellep

Hi Wendy55. Glad you've found something that works for your feet too. Yes, I have problems with my hands too, but I've coped, like you. I have cleaners, and a dishwasher. I do gardening, but only in two pairs of gloves -- cotton ones inside industrial ones -- and not too often. Indeed, I avoid most things with my hands so I can have them working to do some handicrafts. And even then I have to be conservative as my finger tips and nail beds get very tender; some cracking but not as bad as my feet. I had liver spots too but mine have all cleared with Xeloda, which is fantastic. (I'd had an initial breast lump -- surgery, radio and chemo -- then a local recurrence and mastectomy, then lung -- more chemo -- then liver and Xeloda. It has been almost twenty years!) I find Xeloda tiring -- some days I don't do anything at all -- and unpredictable in that I don't know when I will feel well or will have a 'bed' day. But while ever it works to keep my cancer at bay I'm a fan! How do you find the day-to-day? 

wendy55

On a day to day basis, yes its challenging, so long as I get a good nights sleep I can manage reasonably well,but you have put into words exactly how it is for me as well,its the fatigue which is hard to deal with on any given day, and like you its only when I wake up then I know if its going to be a pyjama day or a down but not out day, but the xeloda is doing its job and I will keep on perservering, it was extremely hard at first, initially I was on 3 tablets morning and night but after 11 days found myself in an ambulance off to emergency and 8 days in hospital on a drip, the next 7 days were cruel I may as well have put a mattress in the toilet my poor body just did not know what hit it, so now I am on 2 tablets morning and night I am on a 12 days on 9 days off after the hospital episode,in the beginning both my hands and feet split cracked and I was shedding skin so bad that every morning my bed and the floor was covered in skin bits, that has settled down a bit and now I just have to deal with very tight stretched skin on my hands and limited movement, things like opening cans and tops off containers is very hard, I have to wear gloves to peel vegetables, BUT you do get "used" to it, like you any given day can see me laying on my beautiful electric remote controlled bed, its where I am most comfortable, like you I have a dishwasher and a a partner who is my rock, he has had to deal with the fallout for the last 4 and a half years, my initial diagnosis was stage 4 advanced breast cancer, with tumours in my spine and 6 in my liver, after hitting me hard with chemo I have been on femara, affinitor aromisin and had a very short 6 week spell on tamoxifen, I have been online and found a support group in the UK they call themselves the Cape Crusaders, because of xelodas proper name, its a drug that seems to have had a resurgence and is a popular choice for oncologists with our type of cancer, however as you would know its not for everyone,some ladies have lasted only a few days or weeks, because of the horrible side effects, however its something that my partner and I have chosen to live with and as long the xeloda continues to work I will stay on it, I see my oncologist every 6 weeks, I have a xgeva injection every 6 weeks and my bloods are done every 21 days, its a 5 hour round trip to my oncologist as we live in country south australia,however its worth the trip, I love where I live and I have every faith in my oncologist,it gives my partner and I a lot of hope to find someone who has been doing this for so long, where abouts are you in this big country of ours.If you go to the bcna metastatic personal stories section you will see a series of videos that were done in late Aug this year and I was lucky enough to be asked to participate.
So, thank you for sharing with me, I am a very determined person and I am sure that this is what has kept me going, or you could call it bloodymindedness!! I will not give in, and as long as I have my partner behind me I too am a fan of xeloda,
Wendy 

iserbrown

@wendy55
Here's to bloodymindedness!  I'd say let's raise a glass and drink to that but I don't drink!  Wishing you many many more good days and hey there's nothing wrong with a pyjama day - they are good for the soul as well as! 
Take care from Christine x

wendy55

thanks Christine, love the sign, first time I have seen anything like that, I don't drink much now either a glass of bubbles a couple of times a year, one of which will be with the family at Christmas,wendyxx

Chantellep

Hi again Wendy. I'll never complain about my 45 minute trip to hospital again! I don't even know where Copper Triangle is. I live in a Sydney suburb so my six-weekly check-up is nothing compared with your marathon. It must be a very tiring day, and you do it so often. If Xeloda keeps doing its good work, hopefully your schedule will relax. You sound very determined and strong, a great encouragement. Keep gazing at your beautiful locale; our big sky can be very peaceful.

primek

Hey @wendy55 Is your treatment at the RAH? Perhaps one day we will meet up at the Cancer Council Lodge if you stay there. (If we haven't already and not realised ) I only come down for breast surgeon appointments now. 

wendy55

Hi Primek,
My treatment is at the Lyell McEwin, although I have had palliative radiation at the RAH, we have also stayed at the cancer council lodge on several occasions,you have so much further to travel than I do,have you ever thought of angel flight? although like us when you come for appointments its a time to catch up and do a bit of shopping if you feel like it, my next appointment is for a whole of body bone scan and ct scan of my abdomen, to check and see whats happening on "the inside", that will be at the Lyell Mac on Dec.28th then back again on January 8th to get the results, I had to go to the new Dental Hospital on Monday, I was supposed to have an extraction and of course being on Xeloda and Xgeva poses a problem so had a fasting blood test to check my levels and then off to the hospital, after a lengthy conversation, we came home, with my tooth intact, it was considered too high risk,because there was not a high enough blood count to show that the bone would regrow, and after explaining to me the worst case scenario, I said I will keep the tooth as long as possible, they were really nice about it, I was a a bit pissed about the fact of going all that way, but I didnt fancy a whole in my gum if the bone did not regrow properly, anyway the upshot is no more xgeva until at least January and they will review but I think under the circumstances I will leave the tooth where it is, its only loose and not infected, I can live with that, everyone has really looked after me, my dentist here at Wallaroo said it was a procedure that needed expert attention.I love where we live at North Beach, its so quiet and I wake up to the birds singing, no traffic noise, the down side of course living in a small community is that most of the big services are in Adelaide, but I can live with that, we have a public hospital only 4 kilometers away,with the adjacent Dental Hospital, the community nurses come out to give me my injections and I have a cleaning lady once a fortnight, from the community health centre,and my McGrath nurse works out of the community health centre as well.
It would be great to see you in person, I did go to the forum at Hahndorf a year ago and if anything else comes up will try and get there as well,  
wendy55

primek

@wendy55 I'll let you know whenever I go down in case it coincides. One never knows. I haven't got my January appointment sent out yet since the RAH moved. I've checked I'm on the list. They forget not everyone lives in Adelaide and some people need to coordinate work. It woukd be great to meet sometime. Maybe at the bcna forum one time. Kath x

ElaineG

Hi ladies
love reading the experiences on Xeloda
I started feb 8 - 1500mg (3 tabs) BD - quite gruelling.... 2 wks on 1wk off, now just started third cycle....
BUT had a blood transfusion towards end of Cycle 2 - and still felt like 'death warmed up'
And then just to cap it all off - lovely as in not 'red' sunburnt feet towards end of cylce 2, so stopped half a day earlier for rest wk.  Just started again on Thurs so 3rd day today.  Had a lovely lunch out yesterday, but today utterly whacked
Oh the joys of ongoing treatment.  But like you have heard it's relatively successful in some women so fingers crossed.
I was Dx in Feb 2016 de novo.
Regards, Elaine

MoiraC

Hi Elaine - I was diagnosed July 2017 also de novo and just finished 2nd round Xeloda and same regime as you. I have found it so much better than previous IV chemo but my feet are sore. I developed neuropathy after Paklitakel and am still numb in my feet but no peeling or cracks yet. Have you found any particular creams for your feet that help? So far I am using Aveeda and Moo cream. I find I have to rest each afternoon for about an hour -sometimes reading and sometimes sleep for half hour. Otherwise my pain meds for bone and liver mets dont seem to hold and I too feel whacked. My fingers and numb toes are crossed for you and us all that we will get the good results other women have had with Xeloda. Sending you good wishes -for every crap day there is another good one on the way I am sure

Chantellep

Hi Moira. I had neuropathy after IV chemo but it did gradually improve. And while Xeloda hands and feet are a pain, for me I've found that I've got used to it and know what I can and can't do. Yes, there's a sort of background burn that is there all the time but if I'm careful it stays just that, background. Absolutely no friction on skin allowed and plenty of grease! I've also found getting enough rest makes it all fairly bearable. I've been doing cross-stitch tonight and had a long slow careful walk in the beautiful weather today. Xeloda is still working and I'm still a fan! Hope all goes well, and also for you Elaine.