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Xeloda / Capecitabine - Your Top Tips, please?

GrannyScouse
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello ladies

Marilf, hope your anaemia is easing up and you're getting some strength back. If you let me know what time you're at clinic next week, I'll get there an hour earlier and we can have a cuppa. Mind you, I'll have to confirm on the day as, if history repeats itself, I'll either be on the loo or in bed with fatigue.

I was at clinic yesterday. Blood count is still low but within normal range. Liver and kidneys doing well so they gave me more tabs. At 2500 x 2 daily I was really hoping they might reduce it but no, I'm stuck on this dosage for awhile.

I could really do with some help on diet here. I'm not eating much, can't face meat of any sort, but eating a lot of fish. Friend suggested I cut out dairy for awhile as I've had the big D most days. The only time I took the anti-D tablets I was up half the night with stomach cramps, the only time I've had them. I could do with food to boost the red and white blood cells. Hands and feet are doing well and I'm lucky in that I've had no other side effects.

Good luck to us all xx

Steris
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Sadie,

Well to the Xeldoa/Cap club - great thread with lots of great info ans support here so your in good company. I wish you well on cap and hope you respond well to the drug. Its worked well for me baring the hand/foot, neuropathy which is getting worse since I stopped taking it nearly two weeks ago and after 9 cycle fatigue it a problem for me but I do tend to over do it when I feel well!

Val thanks for your good wishes. I when for my pre assessment on Wednesday had a few shakey moment when I thought about back tracking. Nurses description of op put me off especially when she said they are quite brutally ;-( but have decided to bite the bullet and go for it. I also found out they are going to remove my tubes still and I asked if they would biopsy everything when it was removed and she said that they would. So another waiting and nails aren't look to special I've covered them up with red nail vanish.

To echo Sadie - I had trouble getting on here Tuesday and I've tried to post on some threads only to be disconnected half way through. Changing threads seems to take forever is there any update/progress on the gremblins still on the BCC site. Thanks

Chris xxx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi ladies - I hope to join you soon! I was going to a while ago but I went for a trial at the Marsden. Sadly this did not work so back to chemo number 4! At the moment I'm recovering from two severe infections nd building up strength to join you. So off to order udderly smooth cream amazon.
Sadie Xx Xx
Ps glad to have found you. This site is a nightmare, nd no one is listening - are you bcc??
scottishlass
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Steris, glad youy are having a chemno break but sorry that you are filling the break with an operation. Hugs V

Steris
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi ladies,

I haven't post one because I can't get on the web site and I've lost a few post so given up!

Gail the only way I can manage taking the Cap is to have two anti sickness tablets before each dose. I've tried to cut it down without any success. I spoke to my chemo nurse and she said if that works for you just carry on.

Val - for the last couple of cycles I am really tired and have good days but suffer for them and I'm fed up being so tired. My fingers have a similar syptoms to y ours. I can't work my phone as it has a touch screen its really strange. I've woke up not being able to feel my hand, I just rub it quick to try and revive it.

Things are a little better as I'm having my 6 week break then having my ovaries removed at the end of the month before restarting chemo/. I'm going to ask my oncologist for another reduction. My poor feet/hands are peeling dispite using udderly, flexitol, E45 & Aveeno.

I putting lots of bran and fibre into my diet which is easing my constipation - I think not only is it the chemo but also all the painkillering drugs I'm on.

I feel awful moaning when others are having a worse time than me so sorry ladies. Hope to chat later if I can get on.

Take care love from moaning Mytle xxxx

scottishlass
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Coming towards of cycle 7 of cappecitabine and fingers now sore and wearing unsighly micropore on thumbs! Been sleeping a lot today. Got up late after lying in bed reading or listening tot he radio. Had a relaxing afternoon then later I went upstairs with the laundry and the bed looked so inviting and thought sod it I am going back to bed.....and although I started to read a new book I was soon fast asleep. Hope all Cap Chemo ladies are okay this weekend and hanging in there. Love Val
Marif, Don't think they can specially give me women's blood next time! But a bit more energy would be good!

Janice
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all
I have just started cycle 14. usually feel fine first week not so good second,mainly tired. Mentioned at hospital appointment on Tuesday that my chest felt tight and was sent off for ECG but all was well, having another CT scan at end of August to make sure its still working, I sometimes have my doubts, none of the hormone thrapies worked, I use to be really positive but after 4 reccurences find it harder to be now.
I think some sunshine would be a good tonic, wheres it gone?

Jan

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Mildred,glad things are going well on the capecitabine. I am in the middle of cycle 7. MRI of spine shows mets stable this week so I am very pleased! Just wanted to say re trip to States maybe you could get cover for everything except breast cancer....to protect you should you get run over by car or loose luggage.....sorry to be so cheerful! Pamx
Mildred1602
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Dear all

Here's to a restful weekend. A close work colleague was married today 6 months after completing treatment for a rare vaginal cancer. It's wonderful to hear of people getting on with their lives.

I'm now on day 5 of cycle 2 of cap & feeling 110% better than cycle 1 now that my dose has been reduced to 2000mg x 2

Despite feeling well, pain free & living a normal life all insurance companies have written me off. Onc says risk of any issues is low so I'm tempted to listen to this & have my holiday just been cautious - no bungee jumps!

Ix
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Val - "must have been a man's blood" - Ha-ha-ha . . . fabulous. Hope your strength is returning in leaps & bounds! xx
scottishlass
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Great news Gail. So pleaed for you. Hope your husband's operation goes well and his recovery swift so that he can look after you. I too still have troube finding threads that I have been reading. I keep getting posts that are not there. How newbies manage I do not know. At least we know WHAT we are lookinf for, just do not know WHERE to locate it! It is so hard as there are different ways to find things. Glad I am not the ony one struggling with the site.
Hello to everone else. Marif, Granny Scouse. Fowy Geewhiz, Steris, Laurie and al. Please keep posting to keep this thread near the top. .......just need to know which section it is hiding in!
I had my blood transfusion. Toiok 7 and a half hours in the ward.....far far too long a time. The ward should be ashamed. Been busy with Solicitors sorting out Dad' and Mum's money and Isa's. Now having a restful afternoon doing NOTHING at all as worn out despite the new bloods.....must have been a man's blood! Wishing you all a pleasant weekend. But don't forget to post. Love Val

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Finally have some good news. CT scan was clear so just seem to have primary BC and skin mets to deal with just now.
Of course it doesn't stop me thinking the pressure I've had in my head is brain mets when I know rationally it's probably just stress related and thinking the niggle I had in my hip yesterday was bone mets, but at this stage I'll take what I can get.
Too early to tell if chemo is doing much good so will have to wait another 5 weeks for next onc review.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi All
Too knackered to post anything meaningful (!) however just wanted to say Val that I have been banging my head against the techy wall for about 6 months now that there are way too many sections in the secondary forum but no-one wants to acknowledge this or listen. It is way tooo difficult to negotiate, especially with a chemo brain. ! secondary section would be fine with some sticky threads at the top with maybe a meet up section as well.
I despair and will continue to chat to folk on the FB group and the US site which are much more user friendly.
Lx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks for the tip Laurie. I had picked up that I had to take the pills within 30 minutes of eating, but wasn't too sure why. One less question for my onc when I see her on Friday. I was looking forward to my week off next week until I read the other thread and realised I might feel worse now.

Marilf, hope your kidneys are recovering and they get to the bottom of it.

Scottishlass, hope you got your blood transfusion sorted out. I've also found Im struggling to eat now I'm in the 2nd week of 1st cycle.

I get results back from my baseline CT scan on Friday, so now starting to go into the usual mini-panic beforehand. I have to go without OH this time as he's having a hernia operation on the same day. Really was tempted to get him to delay it but he could have had to wait months for another date and we want to get one thing off our plates now.
scottishlass
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi everyone, I lost this thread like many others on the new site but glad I have located it again. Why do we have to have so many sub sections for secondary breast cancer. Am I missing something? I think it would be easier just to have the main heading so that I could locate all the threads that cover secondaries. Anyway good to find you all again.
I had 6 cycles of Capecitabine and saw my Oncologist on Monday and we have decided to carry on with another 6 cycles at this reduced dose I started on. 2 big 1 small in morning and 2 of each at night. I find the having to eat something more of a struggle towards the end of the 2nd week. I too have odd bouts of Big D but now I am also experiencing the opposite and can get quite constipated. My finger tips are always affected and they seem to be worse on the tablets....a numbness that I have almost got used to. So sensitive that sometimes I cannot use the touch pad as my fingerprints/fingerpads are not always responsive. I was back in the ward on Tuesday and had my Zolidrinate infusion and picked up the round 7 chemo pills. I had my bloods done on the Friday before I saw the Consutant on Monday and my HB was 9.5. There was some discussion on the ward about this blood test being too far back for me to have my treatment so they took another blood test but did eventually agree that I could have my infusion and chemo pills. But on Wednesday they phoned me to say my HB was now 8.5 and that I needed another blood transfusion. I called them on Thursday as the nurse had said they woud try to arrange it for this week. But no it cannot be done until next week as ward is so busy. I stil do not know what day they can fir me in (it takes 4 hours and I realise that they need the staff to watch me while having the transfusion. But now I am feeling the effects of a low Hb and am toiling a bit....everything a bit of an effort. I realise some of you have may already read all this ( that is the problem of having threads in different sections). So awaing a day and time when they can see me. I have to continue with the chemo though.
Another problem...I over did it last week when I was out with my daughter and husband. I walked too far and I had a sore leg the following day. I mentioned it to my Consultant but told her my walking had improved a great deal before I overdid it that weekend. But it is not getting any better and it still hurts when I walk (ok when I rest). She said I may need an xray. As it is still a problem I may need to contact her to arrange an xray if it doesn't get better over this wekend. I feel like it is 2 steps forward and one back at times. Yet my mood is still good and I don't feel down. Odd considering my Mum died 2 weeks ago. perhaps I am on too much morphone that it keeps me this way! Love to you all, Val (sorry for rambling on a bit). X

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hey Granny S. - I always look around for you when I'm at Christie's - next there to see our onc on the 31st of July, so if you are too, let me know (post here?) and we can have a cup of tea together. I've been blessed with quick-in-and-out appointments recently, as I'm having a chemo-break, and so don't have to wait for hours for the pharmacy to dispense the Xeloda. Not sure if I'll be re-starting Xeloda at any point soon - my kidneys are becoming less & less functional, resulting in galloping anaemia, so onc has taken me off chemo & bisphosphonate (worried their long-term use might be part of the problem), and referred me to renal consultant at my local hospital. Feeling pretty much OK, though.

Just been in touch with Sue about arranging a Manchester Cupcake Girls get-together - maybe see you there? xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Gail, the advice is to take within 30 minutes of food as this slows the breakdown of the tablets. I generally have some tea and toast around 7.30 and take just before 8. So far I haven't felt sick which is amazing as if anyone is going to get sick, it's usually me!

My biggest problem is bloating and wind as the days goes on. I start the day off with a waist and look pregnant come 8pm! Fortunately I have 2 dogs to blame the wind on if we have visitors!

Lx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Looking for some advice on how to take the tablets with or after food. On Day 6 of first cycle and only real issue so far was almost being sick about an hour after morning dose on Day 4 and 5. First time put it down to experimenting with not taking the Domperidone for a couple of days and it settled as soon as I took one with some water. Think it must have been more to do with the water as too soon for meds to work. Second time had taken the Domperidone and it settled with a glass of water and an extra tablet so not sure if it's due to how I'm taking the chemo. I've been taking them a few minutes after I finish breakfast but wondering if it's better to have something to eat after the dose as well. This morning I had an extra glass of water about 1/2 hour after the chemo and it seems to have worked OK.
Have a bit of peripheral neuropathy too, but as I still had this from Tax not sure if it's getting worse or I'm just imagining it.
GrannyScouse
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Marilf

It seems we have the same onc. And we were both at the same clinic at the same time! I was seen in the same room as you were about an hour later than you!!

Only just found out how to post on this new setup. I simply have to login!!!

Will post again about how my treatment is going. Now on cycle 3 and no real side effects, except that my blood count is low but not low enough to curtail treatment.

Good luck to us all xx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Foxy - I spent years being a bit constipated on Xeloda, sometimes interspersed with the big D, but we all have an individual reaction to our cancer and treatments. Good that your Mum will speak to her nurse this week, and hope she gets some good suggestions. xx
Foxy
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi ladies
Foxy here posting on behalf of Mum - 87 with lung mets. She's on her week off following her first cycle and is seeing her oncology nurse on Thursday to get the next cycle. Her main problem is not the big D, but the complete opposite. She's drinking lots of fluid, eating plenty of fruit, and taking Fybogel but she's in real discomfort and doesn't want to eat much. Dulcolax seems to work but she's frightened to take it if she has to go out anywhere in case she can't get to a loo in time. She also has pain in her back but otherwise so far so good. She'll mention it to her nurse on Thursday, but since this doesn't seem to be listed as a common side effect I was wondering if anyone else had experienced this and what you did.

Many thanks
Foxyxxxxx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Flexitol is great, and I do get it on prescription (in a huge white tube, not like the ones you buy) - also the Scholl one for cracked heels, but unless my feet split I go with loads of udderly smooth.

My only other tip would be to try to avoid the temptation to pull off any loose skn - in my experience it always ends up creating sore areas.

Jx
Steris
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

opps hit the button twice!

Steris
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Laura,

I don't know what cream your on but when my feet were really bad I brought Flexitol the balm not the moisturise. it looks like vaseline and really did the trick. I can't fet it on prescription but I heard you can in some areas,

Good luck and I hope you get something to stop the awful peeling.

Love
Chris xx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi girls my feet are peeling like mad apart from bucket loads of cream any tips pls Laura
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Re: gel insoles. They go cold but not hard. Put the soft sides as opposed to the gel together in a bag or the plastic they came in. If you put the gel bits together they tend to stick!
belinda
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Just added a message on the bone mets thread before I came here so will duplicate here.
Hi again L, just my experience but I didn't try Faslodex as I wanted something to kick in quite quickly to, hopefully, stop any progression. This is my first chemo, was diagnosed stage 4 from the beginning, so was lucky not to have to have the usual protocol of chemo at my hospital. I'd had 18 months of Tamoxifen, approx 3 and a half years of Arimidex and Exemestane didn't work at all, came off it at 3 months. I know and meet Marilyn as often as possible..we live quite a distance apart but knew what success she'd had with Capecitabine so I really wanted to give it a go. I'm on 2x2000mgs a day.
Lemongrove
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Marif, Mildred/Belinda, thank you for your answer. Marif, maybe your Onc has hit on something? I think it's probably fair to say that most cancers would have become endocrine resistant after eight years, but maybe the addition of chemo has prevented your cancer from making the cellular changes/mutations that would enable it to circumvent endocrine therapy? Hope the anaemia resolves soon.

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lemongrove (and everyone) - I'm a real anomaly in terms of treatment: started an AI (Arimidex, then exemestane) and capecitabine (and tablet bisphosphonate) in 2003, when I was dx with bone & liver mets. Over the years, oncs in the UK (mine included) have changed their views about prescribing both an AI and a chemo at the same time, but my onc didn't want me to stop either one or the other, in case it was the "wrong" one. So, I'm probably the only person here on both; of course, this means no one knows which (if any) of the two might be keeping me going so long.

After all those years of being the Xeloda Queen here, my onc took me off the capecitabine & bisphosphonate a few weeks ago - I've become anaemic, and he wondered if my long-term use of these treatments was having a detrimental impact on my kidneys, which don't seem to be doing what they should to trigger my bone marrow into producing red blood cells. The main cause of my kidney disease/failure is Type 2 diabetes (I also have retinopaty & a bit of neuropathy now too), but onc is now concerned that there might be something else going on there; had a GFR (kidney function) blood test this week, closely followed by a call from onc's secretary to tell me he's ordered a kidney ultra-sound scan. So . . . more to worry about.

As for quality of life on capecitabine, I worked full-time for many years (managing sections of a large regeneration programme) after my mets dx. You keep your hair, but you might have some digestive problems . . . the main impact is probably hand/foot syndrome, which seems to affect most people on this treatment. Creams, creams and more creams . . . and crocs with socks (Belinda's great solution) and more creams - have a look at the posts on this thread for loads of other suggestions.

Laurie - rushing out to get gel soles for the freezer (doesn't that make them rock-hard??) as they sound wonderful. Have to remember not to eat them . . .

xxx
Mildred1602
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Anne - you moan away - we all understand what you're going through. Tomorrow morning though you must look at yourself in the mirror & think about what you have achieved. I'm only on day 10 of cycle 1 & hope I get the same great news as you in 3 months. But I know what you mean about all the nagging doubts that don't go away. It's an old cliche but the seize the day.

Lemongrove - what I've learnt this first cycle is they don't necessarily get the dose right first time for an individual as it's a crude calculation based on height & weight. But our bodies (enzymes) respond differently. Be prepared for the main symptoms (tiredness, nausea etc). Then review with onc if impacting quality of life. I'm feeling slightly better on day 10 as my body seems to be handling drug better but I've been forced to give up work. By day 5 I was able to do short trip to shops & fingers crossed I'll make it to Top Hat at the theatre on Saturday thanks to a girlfriend prepared to drive me into Central London.

Hope that helps girls. Enjoying a pleasant evening in east London sat in the garden with my boys (OH & stepson)

Ingrid
Lemongrove
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi, hope others don't mind me barging in here, to pick a few brains.
The reason I'm posting is that I've just been put on Fulvestrant as a last ditch go at endocrine therapy - but frankly, it looks like I might be heading for Capecitabine very soon. I was on Letrozole for two and a half years with no progression at all, but after a bit of recent progression to the spine (at C2 vertebrae), was switched me to Exemestane two months ago - but unfortunately the Exemestane doesn't appear to have worked because there has been more progression to nodes in chest and neck I should add in case this seems rather bleak that there has been some good news, because it seems that what they thought was a lung met, is more lilely to be an enlarged para-aortic node -if you can call that good news- and there is no further progression in the bones.
I guess the questions I would like to ask are, has anyone had success with Fulvestrant following the failure of Letrozole and Exemestane?
Do the SE's of Capecitibine get in the way of normal day to day stuff - e.g, shopping, looking after grandaughter etc?
Marif, had your endocrine therapy failed when you started Capecitibine? If so why did they keep you on it at the same time as Capecitibine?

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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi
Havent posted for a couple of months although have a look in regularly. Finished my first set of 3 cycles last week and had the results of my first post diagnosis scan on Tuesday and hooray!!, the tumours on my liver, lungs and axilla have reduced so I am all keyed up for the next cycles. I am on cap and lapatanib, but after my 2nd cycle I had a weekend away with my oh and after doing too much walking, hot weather, I had a lovely selection of awful blisters on my feet. So for the 3 rd cycle my onc reduced me to half dose and an extra week off to help them recover. They have got a lot better, so after the good results from my scan my onc has left me on half dose of 950mg x 2 per day and she said this dose will have no detrimental affect on my tumours and will protect my feet from the blisters.
I know this has been great news and after a very stressful week, a fantastic relief, but I cant seem to get my head in sync with my boday and ive been having terrible muscle pains around my midriff and sides all week. I think the stress has been worse than I first thought, although I was told after my blood tests that my potassium levels have dropped ( probably not eating properly), and I am on supplements and I will have another test tomorrow when I go for my chemo tabs.
This stuff really messes with my head sometimes, and even though the news was brilliant, I cant seem to pick myself up as well as I should be.
Oh well, moan over,
Alesta, dont lance that blister as I was told that it could increase infection, although mine broke when I took the plaster off it!
Anne xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi
Havent posted for a couple of months although have a look in regularly. Finished my first set of 3 cycles last week and had the results of my first post diagnosis scan on Tuesday and hooray!!, the tumours on my liver, lungs and axilla have reduced so I am all keyed up for the next cycles. I am on cap and lapatanib, but after my 2nd cycle I had a weekend away with my oh and after doing too much walking, hot weather, I had a lovely selection of awful blisters on my feet. So for the 3 rd cycle my onc reduced me to half dose and an extra week off to help them recover. They have got a lot better, so after the good results from my scan my onc has left me on half dose of 950mg x 2 per day and she said this dose will have no detrimental affect on my tumours and will protect my feet from the blisters.
I know this has been great news and after a very stressful week, a fantastic relief, but I cant seem to get my head in sync with my boday and ive been having terrible muscle pains around my midriff and sides all week. I think the stress has been worse than I first thought, although I was told after my blood tests that my potassium levels have dropped ( probably not eating properly), and I am on supplements and I will have another test tomorrow when I go for my chemo tabs.
This stuff really messes with my head sometimes, and even though the news was brilliant, I cant seem to pick myself up as well as I should be.
Oh well, moan over,
Alesta, dont lance that blister as I was told that it could increase infection, although mine broke when I took the plaster off it!
Anne xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Today's top tip from SBCN. Gel insoles - pop them in the freezer until they are nice and cold then pop them in your shoes. Asda have got some for around a fiver.
Laurie
PS: they're also good for migraines although you look a bit weird with a shoe liner on your forehead LOL!
Mildred1602
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Well it's 9pm & I haven't crashed out yet.....that's my positive for the day!

Rachel - I love the image of you with fully creamed feet & plastic bags.....made me smile

Ingrid
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi everyone!
hope you are all getting along ok,
Half way through second cycle and about to start rads on spine tomorrow.
Been feeling very tearful today, I will be better tomorrow just a down day today.
Its my daughters prom tomorrow, I suppose I am just hoping I will be around for my son's prom in 3 years.....
Cap hasnt been too bad. Feet a bit sore but I have been creaming them twice daily. At night I pop my feet in little plastic bags after creaming them pop my sock over the top, it seems to be stopping them from drying out and cracking.
I have encountered the big D a couple of times but managable se's really.
take care all
Rachel x
Steris
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Oops pressed wrong button! x

Steris
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Gail,

Wow you seem to be on a high dose to me. I was on 2300 twice a day and had a 25% reduction as side effect were just to much that was on the second cycle.. I also had a chemo break to go to New York with my children and never had any problems when they came to scan me.

I now on a maintenance dose which is 1650 twice a day but if the fatigue get any worse I think I'll have to ask for another reduction which my oncologist has already said would be fine. I've leart to be as honest as I can and if I'm not coping then I can always phone them up.

Glad you're feeling better and have a superb holiday in August which isn't that far off.

Take care
Love
Chris xx

Good luck Gail fior Friday hope it all goes well. x

Mildred1602
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Sorry Gail - forgot to add good luck for Friday & everything crossed for your scans.

Ingrid
Mildred1602
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Gail

Thanks for your response.

My Macmillan nurse came to see me today. Really good chat about all positives etc. I realised part of tiredness is depression (the C, new treatment, giving up work etc). She advised me to talk to my onc as my main torment is not being able to go on family holiday to Canada on 1st Aug, meant to be last big trip with kids while they still want to travel with dad & stepmum, they're 20 & 17. Onc phoned me back within 5 mins & said no problem delaying a cycle & they'd review my dose in clinic on 9th July.

So all in all feeling much better than yesterday. Plus I am now 6lbs lighter so every cloud.......

Ingrid
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Ingrid, I can't speak from experience yet as my first chemo appt isn't until Friday, but you seem to be on a fairly high dose there so could be some room to reduce it. My onc said it can take a bit of tweaking to get the right dose for you, so let your unit know if you're struggling.
Mildred1602
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello everyone
I'm now on day 7 of cycle 1 & I'm so tired. Do things get easier? I'm on 2 weeks on 1 week off taking 2500 am & pm. Does anyone have any tips? You all seem to be coping so well. Trying to find a routine so I can get little jobs done but not sure what to do for best. Was hoping to keep working but that all ended on day 3. So fed up with this bloody disease!
Ingrid
celiab
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello again
Am halfway through second cycle now and touch wood no real probs. Really really hope that this chemo is working ...
Thanks Marilyn for the info about the AI - it's interesting to know.
Belinda hope that your marker results are just some kind of blip and your next scan is ok.
Alesta hope that the blister disappears soon
Gail - good luck
Cx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

I breezed through cycle 1 with only a bit of the big D. On day 8 of cycle 2 and am feeling a bit tired and have a blister on the ball of my foot which is breaking down a bit. One of the women on the US site said that soaking feet in epsom (or is it epson?) salts worked for her so going to give it a go!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

I'm currently waiting for a date to start this one. I was diagnosed with BC September 2011 but developed skin mets after going through chemo and rads to shrink my tumours before mx, so haven't made it to surgery in time to prevent secondaries. I'm still catching up with the posts, but you have given me some reassurance that this one might be worth a try. I'm still thinking about whether to go back to work as I'm still 47 and need the money, but sounds like this might be a practical option.
belinda
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Can finally post on the new forums, haven't been able to for weeks! Just posting to hopefully help any new Xeloda/Capecitabine ladies. I've been on continuous 3 weekly cycles of Capecitabine since April 2008. 2x 2000mgs daily. Have the occasional heel cracks but not much else. All this time my cancer has remained stable. My last CT, a couple of weeks ago, still shows all is stable although my tumour markers are just now beginning to slowly rise so I (may) have to change chemo in a few months time...but good luck to all, hope Capecitabine works well for you.
Mildred1602
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Marilf
Thanks for your response. You give me hope that I can keep working. At 48 I'm a little too young to retire & I need the money to tick somethings off my bucket list.
Ingrid
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hey Chris - STABLE! Just felt the need to shout it on your behalf - so glad to hear the peachy pills seem to be working well for you, and hope the annoying side effects calm down soon. I still get "surprise digestive challenges", even after more than 8 years on capecitabine, but it's not a constant problem. Only very occasional, thank goodness. xx
Steris
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Ladies,

Had my results from scan last Thursday and everything remains stable yeah what great news. I was worried as I have a few period of pain and the tiredness have been a ugger. But my husband keeps telling to slow down. I'm full of admiration for you Alesta29 I don't think I could cope with working fulltime now although i really missed my work colleague and the job itself. I decided to hang by boots up last year as it became to much for me a very personal decision as we all are so different.

Well after a bit of debate about further treatment I was given the choice of going onto my last hormone treatment as everything else has failed so it was Faslodex or to stay onn the peachy pills. I didn't hesitate and decided not to use my last hormone treatment and if the peachy pills are work then bring it on!!!!

I spoke to soon about not having diarrhea I felt awful yesterday after a great day with my sister and friends. Fell asleep all evening, becoming a bit of a habitat I'm afraid. I work up this morning with horrendous stomach cramps and had two awful bouts of diarrhea. My head feels like its about to explode, I'm drinking plenty of fluids and hoping I don't have a return later on today.
Never mind I know its a side effect of the Xeloda but the main thing its that it working and I'll get over the it. I hope you all have a great weekend.

Love
Chris xxx

Foxy
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

I can't begin to thank you enough for all the useful advice and support. The Hospice advice is particularly useful. She has been a supporter of Marie Curie for many years (once went to Buck Palace for a volunteers' reception nominated by them) and I think she has followed how their services have developed. Her GP practice has a Marie Curie nurse so I'll follow it up with her and also ask about podiatry. My Mum is quite a sociable lady but lives in a small village so has to drive places, but she also has a deteriorating eye condition and I'm concerned they will take her licence away soon. This will inevitably limit her options further, although the roads of West Yorkshire may be safer as a result. She had a surreal conversation with the oncology nurse about going to her "luncheon club", the nurse clearly thought she meant at a day centre while I knew she meant the Conservative Ladies' Association monthly ladies-who-lunch do. So you are right, we do need to think about ensuring she has the company of people who understand and can help support her. I'm looking into Attendance Allowance under the special rules, the oncologist muttered something about her CT scan showing up small nodules in her lungs as well as the lymph nodes in her collar bone, but I peeked at her notes and it clearly said metastasised recurrent breast cancer so I'm hoping there will be no problem, then she can blow the whole lot on taxis if she wants just so long as she can keep getting out and about.
Incidentally, the oncologist said if Cap worked for her she could stay on it indefinitely. She is also being offered herceptin but they have to check her heart first and again they said that could be indefinite.
Thanks once again, this site is so good and I wish I'd found it sooner. When I was first DX I was scared to google anything in case I panicked myself and just concentrated on the BCC booklets I was given, I only found it when I googled about letrozole side effects six months down the line and I've learned so much, as well as being inspired by so many of the stories which people share so willingly and openly.
I've no doubt I'll be back soon for more advice.

Foxy
xxxxx