Hi All
Got my Xeloda reduced from 2150mg x2 to 1650mg x 2 so hopefully side effects will improve.
Love
Sue x
Hi Sue and others
I have recently discovered this forum and have found it very helpful to tap into other Xeloda takers.
Sue… I started off on a high dose of Cap and have reduced from 1500mg per day to 1000mg daily. I have also reduced to one week on and one week off as SEs were becoming intolerable.( started CAP in March 2011)I have had a good response to the CAP and things are stable at the moment.
Side effects are manageable, as at one point I thought I would burst! with all the medication pumping into my feet and hands. I am getting used to intermittent tingling and numbness in my fingers plus out of the blue cuts, sores, blisters ,redness, sensitivity on my feet. Afternoon naps give me a pick up and 40 winks turns into 40 mins of deep slumber!
On the plus side I cycle,swim, remain active, and have no pain.
Sue , good luck with the reduction and lets hope for reduced SEs !!
Hi Its Esha again
Oops…
Just checked my Xeloda dose…Its higher than I said…
I am on 1500mg twice daily so a total of 3000mg each day. At the start in April 2011 I was 2000mg twice daily.
I am sure your body will take kindly to less Xeloda. It took a while for me to notice the reduced SEs.
By the way has anyone had redness on their bum with skin blistering and itching?( Whatever next I mutter to myself!)
Esha
Hi Esha - in eight years of being on Xeloda, I don’t think I’ve ever experienced “red-bum syndrome”, but that doesn’t mean it’s NOT a Xeloda side effect. From time to time, I do get mysterious itchy rashes here and there (trunk, legs, armpits) that take a while to disappear - who knows where they come from . . .
Sue, glad you’ve had a dose reduction, and hope that sorts the side effects for you! xx
hi girls, - esha, nice to see you on this thread!
OK, off to holiday on Monday, just a quickie - there is always something to worry about, isn’t there?
My WBC has recovered miraculously without any intervention - now right in the middle of the normal range!! So that’s great.
But almost all blood test related to the liver has gone up a lot!! ALT and AST has gone way above the upper limit. GGT and Bilirubin has shot up as well, although they’re still in normal range - just. I know Xeloda can affect liver functions, just wondering anyone has actually had any problems in this regard? As my chemo nurse told me today, if this is a one off, then it’s fine. But if continues next cycle, then she’ll need to consult my onc about whether I can continue Xeloda. I do have liver mets (hopefully still stable), so either way, this is not good.
OK. Will forget all about that during my holiday and worry about it when I come back.
Have a nice weekend. xxx
P.S. My feet are turning black:-(
Hi m1yu
Sorry to hear that you have more to worry about! It appears to be never-ending doesn’t it? My bloods all improved without intervention too, so let’s hope the liver function ones do the same.
My feet are darkening too! - it is very strange and I have a few brown patches, like large freckles/moles on my hands and my feet(my hands have remained Ok though. My feet are no longer peeling (perhaps all the skin has gone!) but they are quite sore. We have underfloor heating in our bathroom and we have only just put the heating on, this morning I walked across the hot tiled floor…and it really hurt!! and carried on feeling weird for a while.
I hope you have a fantastic holiday and have some success with the herbalists.
Sue - Sorry to hear that you are suffering! hope things improve quickly.
Love to all the other xeloda princesses! h ave a great weekend xx
Sorry to hear this m1yu…hope your next results are better and this is a blip. I do know the liver can be sluggish to get rid of Xeloda (because it’s tablet chemo perhaps?) and when I’ve had tumour markers taken very close to finishing a cycle they have occasionally given false readings.
Skin!! Yes I have dark soles, lots of freckles on face and neck now, always had a few, I look very cute 
Lots of darker moles and brown spots on torso, arms and my underarms are very dark…Onc said I had typical long term Xeloda skin. 
Have a good weekend all…x
Hi m1yu
I hope you have a lovely time in China and that things settle down medically for you. I do remember when I started on CAP it took a while for my tumour marker to come down and for my blood test results to settle.
I wish so much that all your results are just a blip and that as the CAP kicks in that you will hear better news.
Happy hols to you.
Esha
Hi all
Belinda that is interesting about increased freckles! I have been aware that my skin is still quite brown and is covered in tiny freckles and now quite large liver spots like my Grandad had! I am only 45 and my skin is really looking old! unfortunately I don’t look cute, more grubby as if I need a wash! I even have developed a large brown mole on my eyelid since starting xeloda!
Yes and my feet are quite dark too! I have a few brown spots on my palms, but so far my hands are OK! My week off begins Tomorrow and I am hoping this one is symptom free too, as we go to Sorrento on Wednesday!
m1yu - have a fantastic time in China, hope you catch up with everybody you want to and have some success with the herbalists!
marilyn and Esha - don’t like the sound of ‘red bum syndrome!’ hope I manage to avoid that one!!
That’s all I need on top of numerous scars from the nodular vasculitis last year! Brown spots??? Must order a bucketfull of concealer. NIcky, you still looked as lovely as ever last week.
Sue xx
Hello everyone,
I’m back from my break in sunny Oman, and enjoying the last couple of days of my extra week off. Its been lovely to feel the sun on my bones and spend time with all the family together, and I think the extra week between cycles has done me lots of good - although my feet have still continued to peel.
Lovely to read all your updates - hope your break is going well m1yu and that your markers settle soon. Re the liver spots Nicky, I’m of the age where I am naturally developing liver spots, but my other chemo, Abraxane, has made them disappear! Will be interesting to see what happens when I finish that course in December, especially as I think I shall be carrying on with Xeloda. I sympathise with the sensitive feet on the hot floors too - I haven;t experienced that, but my palms definitely feel the heat more, e.g. in washing up water, and holding a mug of hot coffee.
It suddenly hit me yesterday how much cancer and its treatment has affected almost every part of my body, what with mastectomy and reconstruction, leg pinning, swollen leg following DVT, scars, tattoos, hair loss and other chemo side effects too numerous to mention. I think my ears are about the only visible part of me that haven’t been affected yet. We speak about Breast Cancer, but the impact on the breast is only the start of it: before this happened, and despite knowing people with BC, I truly had no idea. It is so good to be able to post here and be in touch with others who do understand.
Much love to you all,
Julie x
Hi Gee Wizz
I agree with you totally about how the treatment for our cancer has impacted on our body, plus the ongoing emotional roller coaster rides we are on plus the effect this has on our partners, children and friends plus change/loss of job, plus low energy levels plus rattling with tablets etc etc etc but what a gift that we are being treated.
Esha
Hi fellow xeloda royalty
I hope everyone is OK and coping well, managing any side effects OK.
I am now having another extra week off, in fact this is the third time my treatment has been deferred! My bloods are so bad that I was booked in for a blood transfusion Tomorrow. But I feel so well, that I protested and they will review next week when I see the oncologist, however the nurse did say that as my bloods get worse each time, be prepared to definitely be made to have one next week!
I am confused as to why they keep dropping as I feel so well! Not overly tired, I walked miles in the last week and have kept the skin on my feet, they are a little sore and tingly but are not stopping me enjoying myself and my tummy/toileting has been fine! Although more brown spots are appearing on the palms of my hands!
So now I look forward to a bonus week off, no tablets and I will be able to stomach all the wine and limoncella we brought back with us…so I suppose every cloud has a silver lining!
Take care all xx
Hi,
I’m back (late Friday night)!! My coach arrived 30 min late. Then I saw the news about the crash the the next day, so that’s probably why.
Anyway, had a fantastic time in China. It’s strange how the fatigue can just disappear when I was enjoying myself - even had energy to climb some distance on the Great Wall!! The Olympic Village was awesome. The herbalist prescribed some herbs, so I’m sure that’s helping with my energy levels.
There wasn’t a single rain drop when I was in China, so it was very dry. I’m sure that has some impact on my hands and feet. I’m feeling great, so hoping that’s a good sign.
It’s also very nice to come back to my flat that has been given a good make over by my friends while I was away. Just need to finish unpacking everything and put it in the right place now.
Have read all your posts, but don’t have time to reply individually. Wish you are enjoying the weekend.
M xxx
Hi
So pleased that you enjoyed your holiday M.I think adrenaline plays a part, I know when I have something planned I seem to be able to do it.
How fantastic to come home to a makeover!
Nicky, I hope your bloods get sorted and you can make it to the Trafford Centre as it would be lovely to see you in the flesh again.
I start my 4th cycle on Wed, my best week seems to be the 1st week of chemo, I suppose the chemos at its lowest level then.
Feet are ok but fingers are splitting and really sore. Tummy much better and not as tired.
I’m having a horse riding lesson on Tues, not been on a horse for 6 years (the day before I was diagnosed with the primary) I’ve got a horse riding machine so I’ve been on that this afternoon. Foumd my riding boots (they got 6 year old mud on them!)
Love to all
Sue x
Hello all and welcome back to England M1yu. I am pleased that you feel well and lets hope that CAP is having its way!
Apologies all for not tapping in recently .
I like to see entries so I thought it about time I contributed.
We are all in the same boat with this medication. The side effects that we live with are not too obvious to others but they are certainly what we all know about!!
.At present I am on day 5 of my weekly cycle and have developed cuts in the cracks of my feet. They come up out of the blue and are sore. I find the best thing to do is pad them with a dressing and then put socks on followed by flat comfy boots or shoes. Have recently been to Clarks and bought very comfortable (yet fashionable boots that make a difference. The shop assistant that served me looked highly releived when I finally left the shop after trying on so so many. They had to be comfortable!
Does anyone else have these sore cuts on their feet.? All side effects come and go and there is no pattern to them at all. My tingling/numb fingers are part of me now. Fine doing dry things with hands but I find I have to wear rubber gloves for alot of kitchen things. My husband has happily launched in with cooking meals which is a real plus .
I also have a streaming nose and watery eyes when I go outside, always have to have a hanky at hand. Anyone else have this ?
As for scans the hopeful news is that the Consultant is not doing another scan until the new year …( Shifting from 4 monthly PET scans to 6 monthly)as he is hopeful that things are stable at present. I feel well (although do get tired and need my afternoon kips) and have no pain, tumour marker is down to 29 so fingers crossed that this CAP and Exemastine, and Bondranat are working.
I get fab support from the Penny Brohn Cancer Care centre in Bristol, a comfy, soft approach and support to compliment all treatment. Would be good to hear from any of you.
Esha
Hi Esha
Are you getting exemestane as well as Xeloda? I was on that when my secondaries were diagnosed and I was changed to Femara. I know Marilyn also has a hormone alongside chemo. I just wondered as I am ER + 60%, but all hormonals have failed, I have wondered if they were working to some extent, but not at a strong enough dose! I guess I will have to wait and see if the xeloda is working before discussing treatment changes!
I haven’t had cuts on my feet, but have had blisters, but they seem to appear in well moisturised areas, it’s as if the blistering is coming from within -n well I guess it is. In the middle of the last cycle they were a very strange purply-brown colour underneath that ran around under my toe nails! weird!
I don’t have problems with dryness on my hands - but I do keep dropping things - 3 glasses and 1 plate smashed so far, it’s as if I don’t get a proper grip on things! I don’t have watery eyes and nose, but my eyes can get very sore, as if I have been swimming underwater!
m1yu - glad you have had a good break, you certainly seem to have come back positive! - lets us know how the herbs etc go!
Love to everyone else - off Tomorrow to see if my bloods have improved!
Hi
I am on my 2nd cycle of xeloda and due to start my week off on thurs day so very interested in comments. My first cycle was disastrous and ended up in hosp but dose was reduced and very happy to say no real problems so far. That is not in the sickness, and diarrhea department thatnk goodness. However I have been excessively tired and weak - never felt had so little energy before. Just have to rest when I need to and not stress about it. So far I have mild skin rash on face, tum and bum. Skin and mouth very dry. No problems with indigestion. I have a good appetite as still on steroids.
Am hoping week off will be ok as off to Edinburgh with hubby at weekend.
By the way, good tip from the support group I go to re cream for dry skin - its called Udderly Smooth and is available from Amazon for £8.95. Well worth it though as lovely and light not greasy at aa.
Good luck all with future cycles
Hi all
Esha, yes I have also had skin cracks (hand & feet) with the Xeloda, mainly quite frequent heel cracks; also neuropathy (numbness), redness, pain, peeling, lifting toenails, blisters & rashes on feet - lovely (!). I use Flexitol, Udderly Smooth “extra care cream” with 10% urea, and a wonderful organic Skin Rescue Balm from Herbfarmacy in Wales: herbfarmacy.co.uk, trying to use each a few times, then change over to another. Slather them on twice a day - all very gooey! I think if I wasn’t using these my feet would be in much worse condition. Certainly there’s a marked improvement on my week off Xeloda - much less pain. And I’m very interested to hear that you’re having a hormonal + chemo like me, as it’s very rare for oncs to offer that combo - my onc wouldn’t do it now, but we’ve decided not to stop either the exemestane or the Xeloda, in case we pick the “wrong” one.
Sue & Nicky, looking forward to seeing you both next week for Manchester Cupcake Girls’ Winter Get-Together - I promise not to show you my feet . . .
Twinmummy, glad you seem to be tolerating the treatment a bit better now after a dose reduction, and hope it works well for you.
Marilyn xx (XQ)
So So good to hear from Nicky65,Twin mummy, and Marif and picked up some useful info.Thanks so much and its good to share these details with one another. Will get some skin rescue balm as an extra.
By the way I use udderly Smooth cream too and get it on prescription from the hospital. Twin Mummy,it may be worth asking to have it on prescription?
Nicky 65, re hormone treatment and CAP.
I am ER+.I started on Letrazole after being diagnosed with bone mets in Jan 2010 and after 10 months in Oct 2010 I switched to Examastine as the letrazole was no longer holding things( developed a new enlarged lympha node).
Examastine showed a very good response in my bones but in Feb 2011 there was “new activity” in my hip. At that point I was started on CAP.
Rather like you Marif, as I was having a good response in my bones from Examastine it was decided to keep me on the Examastine as well as adding in the CAP. I had a second opinion they said they dont routinely give the two but didnt want to rock the boat by taking me off the examastine.
Twin Tummy I do sympathise with all of your side effects. However I do remember at the beginning also being unbeleivably tired and just could not get myself to budge once I was lying in a horizontal position!! Sometimes those 40 winks shift into 2hours and 40 mins! Side effects for me still vary so hopefully yours will settle down too.
Keep the postings going…, giving and receiving snippets of advice and sharing similar things is hugely helpful.Esha