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Xeloda / Capecitabine - Your Top Tips, please?

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

Good luck today Racer xxx

 

my this thread is getting hard to find now....!

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

Thank you everyone. We will keep positive vibes going. A bit of retail therapy enjoy George. I will just try not to stress too much tomorrow . I had a better day today a local charity visited to me and are arranging a voluntary buddy who can do some ironing or minimal cleaning, or take me out for a coffee and help with hospital visits . So I am going to give it a try and see if it helps . Think it will take some stress off the family and perhaps get me moving again.
Take care everyone and hugs xxxx

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

Well done, George! A woman after my own heart! An excellent excuse for new clothes.

 

Hugs. Barton.x

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

Hi Barton

As a result of coffee spill, treated myself to a new jumper. Got to make a positive out of a negative😉Felt I deserved a treat after all that breathing in and holding my breath!
Thanks for good wishes

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

Just a very short message for racer, George and anyone else facing scans, results, etc. Good luck to all of you! Glad your scans are over, George, but sorry about the coffee spill! Racer, good luck with the next lot of pills!

 

Hugs to all. Barton.x

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

Forgot to say, hope review goes well tomorrow, racer. Cyber positive vibes coming your way x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks for good wishes, Racer/ Carolyn. All done now, just enjoying a Costa coffee which I have managed to spill all over me. Lid wasn't on properly(Duh). Scans fine, but had trouble locating veins which became a little stressful as did nurses constantly asking me if I had thin blood. Don't need another thing to worry about😉
You are right to focus on a positive thing a day, racer, however small it might be. At the risk of sounding very sad, I light a candle every night and look back on all the nice things that have happened- hug from niece, walk in Park, etc. I also try to go for a short walk every day which does lift my mood.
Right off to train station, to get train to Stratford upon Avon and some normality.

Enjoy rest of week

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

Hi everyone think we need a group hug and thoughts with everyone. Thinking about you George and hope you have a nice time at Stratford.

I know what you mean about people especially if you look ok but feeling rubbish. That is what helps with the forum that we can support each other.
I am doing what was suggested trying to do something positive a day . Even if it just hoovering . My life is exciting lol. I said to my Hubby that I think because I am at home all the time I am not feeling motivated. We had lunch out yesterday which made me feel a better .
I am just hungry at mo which I think is the steroids which I am coming off hopefully. Just having slight blurred vision when I look into the distance especially writing. I wonder if I need a blood transfusion . Review tomorrow with Oncologist . Hopefully no cape next week and then restart for another week.
Hugs and love to everyone xxx

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

Hi George
All the best for your scans ..gosh that's a very exciting day !!
Holding cyber hands for good results .
Carolyn xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Scan day for me today, ladies. 2 in one day. Yikes. CT first then MRI. Honestly, the fun never stops. On the plus side, off to Stratford upon Avon after hospital visit to join hubby who is working there for a few days. Detailed results will be 17th Feb, but I have asked if I can phone for a general picture next week. Yikes again.

Hope SEs are starting to settle for everyone. (Can't comment as on second week off chemo)

George x

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

Oh and im in the 'Ratty club' too..I find the third week( week off my chemo) is worse...anything that my oh does which normally might irritate...well it really bugs me...poor chap. Im also more sensitive about things and more likely to just' come out with it'

 

anyway, I do hope you manage to get some adjustmentxx

 

Moijanxx

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

Yes, Bousy, was very pleased to see you, wondered how you were!

 

Barton has said it all really, ...cant add much..you might be better on a reduced dose..and or alternate weeks. Cape seems to work very well for people...Have some hope it does the trick for you...I do hope the pain is less and may even go away...horrid stuff pain....its bad enough being ill without that too! Xx

 

i had heard that rads do help with pain from bone mets.....maybe the benefits will increase with time.xx

 

hugs, Moijanxx

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

Hello Bousy, that is the dose I was started on. I think I did about 7 cycles (I think) at that dose, then was reduced to 1800mg twice a day. It helped a lot. It is worth asking your Onc if you could have a slightly reduced dose.

 

Sorry you have no appetite, and are feeling ratty. I hope you get good news when you get your Tm results on the 9th.

 

Hugs. Barton.x

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

Hello Moijan, I could see your original post, but as you say, it now seems to have diappeared and I can only see your attached copy! Weird! I don't think trousers can be a banned word - perhaps they meant to delete,mine where I said sh*T, but they usually just edit!

 

Hugs. Barton.x

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

Hi everyone,

I know how you feel. I'm on my fifth cycle of cape and haven't felt too good all the way through it. I'm on the max dose of 2000mg twice a day. I was fine on first 4 cycles. As I have secondary in my spine, I've had a lot of pain. After radio before Christmas, this has eased so onc said to try and wean myself off morphine tablets. I've cut out morning one and now the evening one. Trying ibuprofen again. I had a CT scan last week and TM blood test. Get results on 9th to see if it's working. Last time TM was so high they wouldn't tell me results.  I'm just worried it won't work. Also have had no appetite and I get ratty. Lost quite a bit of weight.

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

Hi Barton, im getting a little paranoid! The post below...I posted it and then edited it, checked and saw it wasnt anywhere on the thread! Fortunately, I was able to 'go back' on my ipad and found the copy...but thats really weird...do you think maybe we arent allowed to say words like 'trousers' on the forum? 

 

Oh, its gone again...well ill jolly well paste it here----!! On this post....have we a ghost?

 

.............................................................

 

Yes Angela, Barton is right....I spoke to someone i hadnt seen for years and when I told her, she said 'well, youre still here arent you? ' as if that made everything better...!

Yes, people can be a right pain in the 'trousers' frankly.

re. Your cape dose, forgive me if Barton has already mentioned this...,

it sounds exactly the very high dose I was put on initially...they made me fill out a journal and after id had diarrhoea whilst in the library, and a session of uncontrollable vomiting.....I wrote 'life isnt worth living'!

And The onc hurried to reduce the dose AND made it one week on and one weekoff...It was so much better after that and worked well for two years..!

the other thing is, Cape was wonderful, because it was a tablet...all under my own controll and what I didnt realise at the time was that there are very few tablet chemos. that are taken by mouth...I was free to travel and do lots of stuff I cant do at present......so hopefully your onc will be able to sort a suitable dose...they always start with the largest dose to see if you can tolerate it....

lovely Barton and I have had DVTs so its really important to. Drink gallons if you can and be as mobile as you are able.

that said...they tell me excercise makes us feel better..and it does...now im having to inject myself every day with blood thinners...ive got a bit lazy again!

i really wish you well on Cape, I miss it madly xxx
Moijan💜💙💚

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

When your in the middle of Cape and the side effects set in that's when I'm at my lowest and trying to explain how I'm feeling when sometimes I don't really feel like talking is so hard..it's as if I don't have right to be moody or have off days.have my first review tomorrow and then start cape again. Went off food because if taste, did like ice cream and drank bottles of lucozade. Thursday will start cycle again really hope I don't get too moody can't be doing with it but we'll see I suppose. Hugs and thanks everyone x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Yes Angela, Barton is right....I spoke to someone i hadnt seen for years and when I told her, she said 'well, youre still here arent you? ' as if that made everything better...! 

 

Yes, people can be a right pain in the 'trousers' frankly.

 

re. Your cape dose,  forgive me if Barton has already mentioned this...,

 

it sounds exactly the very high dose I was put on initially...they made me fill out a journal and after id had diarrhoea whilst in the library,  and a session of uncontrollable vomiting.....I wrote 'life isnt worth living'!

 

And The onc hurried to reduce the dose AND made it one week on and one weekoff...It was so much better after that and worked well for two years..!

 

the other thing is, Cape was wonderful, because it was a tablet...all under my own controll and what I didnt realise at the time was that there are very few tablet  chemos. that are taken by mouth...I was free to travel and do lots of stuff I cant do at present......so hopefully your onc will be able to sort a suitable dose...they always start with the largest dose to see if you can tolerate it....

 

lovely Barton and I have had DVTs so its  really important to. Drink gallons if you can and be as mobile as you are able.

 

that said...they tell me excercise makes us feel better..and it does...now im having to inject myself every day with blood thinners...ive got a bit lazy again!

 

i really wish you well on Cape, I miss it madly xxx

Moijan💜💙💚

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

I know, Angela - I have a very good friend at work who has helped me immensely at times, but even she says very tactless things sometimes (one of the worst was when I first knew I had to have chemo. I said I was distressed about losing my hair and she said "I don't know why, you never did much with it anyway"!). She has witnessed all my previous treatments and how upset I get, and she still has no idea how absolutely soul destroying it is sometimes. I find one of the worst things is when people ask how I am, and I have to say I'm fine (even though I feel like sh*T) otherwise I end up crying!

 

Try to be kind to yourself.

 

Hugs. Barton.x

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

Hi Barton your so right, it's all those feelings sometimes all in one day!! I'm not on any other tablets except cape and anti sickness.it doesn't sink in with some people how frustrated and low I get.dealing with breast cancer since September 2015 as it's spread to chest wall it's niw inoperable that's why I'm in Cape. It's the near constant worry) thought of it spreading that's hard to deal with.sime people don't understand how I feel mentally and physically.they say they do till a silly thoughtless remark shows they don't
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Angela, sorry you are feeling so tired and angry. I told racer the other day (who said she was being moody and also wondered if it was the Cape) that I hadn't been moody, and wasn't sure if it was the Cape or "just" stress. However, I was just thinking on the way home from work today, that racer said she was on steroids (I think). I know they can affect your mood. Are you also on steroids?

 

The other reason could be that you are still trying to accept your new situation (I have had 2.5 years now to get somewhat used to the idea)- it is incredibly stressful, and no-one should punish you for feeling moody/angry/distressed/worried/sad, etc, etc, etc (you get my drift I expect). I am lucky, all my friends and relatives who know about my Secondaries have been as understanding as someone can be who hasn't been in the same situation, but I think, although it would upset me too, it is their problem, not yours. Keep telling yourself that, and hopefully you will gradually accept that you are not in the wrong, and have a perfectly good "excuse" for being angry.

 

Sorry to ramble, and I hope I have made sense!

 

Hugs and best wishes, and to all Cape Crusaders. Barton.x

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

My angry burst was out of frustraton! The person I was angry with just didn't understand at all couldn't even be bothered to come and see how I was.chemi affects everybody differently nit all side effects are obvious.havent eaten much this week either due to loss of taste.simetimes it's lime banging my head against a brick wall explaining how I feel, good days and bad. I'm not supposed to let things get to me ( they say) think positive ( they say) . Sorry to moan on but dealing with everything is hard
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Angela

Unfortunately you will meet many people who are so insensitive and say all the wrong things. I find even friends who have recovered from treatment for a primary BC still unwittingly say things that I thought they, at least, would understand and therefore not say them!

If you do wnt to repair the bridges with your relative maybe do it when you feel able to do so and possibly by email?  I gave up telling friends and relatives over and over again the same details so I tend to communicate anything to do with my treatment or current state of health via email and keep the actual conversations for more normal things. You could tell them exactly how you felt at the time, that way they may get some understanding about how tired you are and although you probably look OK that you are not feeling OK. Only if you feel up to it.  Also after I started on Cape in 2013 my OH and I decided to take lots of short mini breaks in Europe, places I was comfrtable with their health care system and knowing I could get back from relatively easily.  It's also easier to get travel insurance for Europe than further afield.  Whwn I was first diagnosed I told my husband that I felt too much pressure in planning things too far ahead and for too long so we started with the one night away in the UK and progressed to trips further afield as and when I felt better.  I found out by accident that if you book any flights on BA using part or full airmiles you can cancel them with only a small administration fee to pay.  This has helped us plan ahead but we both understand we may have to cancel nearer the time but then have a backup plan of something else in the UK.  I have only been able to do this due to my spending at a certain supermarket who give you vouchers which you can exchange for airmiles!  Also we always book a hotel either in the UK or abroad that is last minute cancellation - again, the pressure is taken off. It may cost a few pounds more than the non cancellable rate but I'd rather that than fret about it or lose lots of money if we had to cancel.  I have also taken my holidays in the 3 month gap between scans as, when they are stable, there is no reason not to.  Obviously its early days for you but hopefully you can gradually adjust to the dose of Cape (or get it reduced if you are struggling) and feel more like getting away from it all.  It has helped both me and my husband escape reality many times as there are no real reminders about hospitals, blood tests, oncology appointments if you are away from home.

Nicky x

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

Hello Angela
Sorry I can't answer your anger question as although I'm posting here ..I actually am not a cape crusader yet !
I know other ladies will reply but I guess as it does hit the brain ..it could affect your mood maybe .
People just don't understand secondary dx ..they think a few pills and we are all ok again .hence why this forum is so helpful as we are real people with the same thing in common ..cancer !!
Carolyn xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Anyone had problems with anger, I feel so guilty because after a very thoughtless comment from a relative I snapped in a big way.sime people dint understand how it all affects you physically and mentally.my first cycle of Cape got fatigue really bad haven't been out in 2 weeks. Just had blood test and see oncologist tomorrow and start my 2 nd cycle of 2 weeks on and 1 week off. 1800mg twice a day unless oncologist reduces my dose.the person I argued with isn't speaking to me now it just doesn't sink in with them I can't help it I get so frustrated xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hiya Angela
Read in paper yesterday that they now say lumpectomy and rads is the better option for many ladies now ..I had lumpectomy too so u would have probably chosen the best option. Either way it's the rogue little cancer cell that escapes the original site that is the culprit ...even after ten/ twenty years !!!
Trouble is until they start causing pain ..we don't know about them !!
Carolyn xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Carolyn it's hard not to look back, I know I do.what if I'd gone to docs sooner, I should have asked for mammogramme,I should have had mastectomy instead of lumpectomy!!! I also find it hard to look forward more than a week or so thinking about when I next start cape again what are my side effects going to be like etc.my husband wants to go away in July for our anniversary but I can't think that far ahead, the what ifs etc. It's flipping hard physically and mentally xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Just following on from moijan posting ..eleven years after my primary ..I got hip pain and as I was busy moving house and working full time etc etc ..I just took painkillers and put it down to old age !! I went doc's ..he said it was arthritus ( in my family) I went chiropractioner and dx with sciatica ..anyway a whole year went by until I got the dx of bone Mets hips, femur and pelvis ...I look back now and feel huge regrets I didn't push for xray/ scan etc but I have to look forward and not back now !!
What is ..is .
Carolyn xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

RE down days...

 

Hi Angela and Racer,

 

 

yes George is right and her advice contains lots of good suggestions.xx

when I read these kinds of thoughts on a thread, it makes me reflect upon wether we go through a kind of bereavement process, when we travel the cancer journey? If we have ever lost someone, we tend to find things we 'should' have done, or should' have said as if we need to beat ourselves up...it seems the same with bc!

 

My own example was having been sent away from the breast unit treated/feeling like id been a hypochondriac...I left it a year until I found a large tumour..before even checking my breast. It is really strange how that became 'my fault' well, that was 17 years ago and im hyper alert now,but always wondered..what if id asked for a needle biopsy?

 

Really, we, none of us are able to control everything and also, we are all doing the very best we can...so It is a bit unfair to beat ourselves up. What we have to try to do, is stand back and see he process for what it is....and as George says, collect good experiences, maybe even note down positive thoughts, like
'well done me, for asking that question' or ' I handled that chemo session well'

 

it is a tough journey, the one in our heads xx

 

hugs, Moijanx

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

Thanks everyone I will behave myself and not google lol. Yes George I have been on a waiting list with Penny Brohn as they do courses in my local area and thought it would help with relaxation etc. I was having some counselling at a Hospice that my son was accessing but that stopped as he is better. So trying to link with Macmillan to see what there is available. It did help me because I felt ai could just pour everything out and stopped me feeling too down .
Feel still tired today and tried to tidy up. Thinking if I can start motivating myself. Things took longer and had to do School run as well. Tea is on so time to just sit for a bit .

I don't know whether I mentioned but cannot get rid of this yucky taste in my mouth. Any suggestions ?

I know what you mean about holidays as you darent plan anything just in case and has to be last minute. I asked my Oncologist for February as kids are off for a week . Told me I can't leave the country but can holiday in U.K. As long as I can get back. He said he could do me a letter if I needed the Hospital. We had to do this with my youngest when he was having Chemo just as a back up. I have said to the Hubby that we will book something for a couple of nights and it is something positive to focus on. Hope you all can have a hol it makes you feel better and being away from Hospital etc .
Hugs to everyone xxx

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

Hi Angela, I know what you mean. Husband wants us to go away for a short holiday at the end of the month and I keep stressing about what happens if I am ill abroad. However, unless consultant says otherwise, going to "feel the fear and do it anyway" - it is only Portugal so not too far away and will give me something to look forward to on these grey January days. Don't beat yourself up with the 'what ifs.' I had a mastectomy and my cancer came back. Sounds simplistic, I know, but surgeon said it was just bad luck. What treatment are you on? Hope SEs are not too bad.

Have a good week.

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

Hi George, know what you mean about down days and thinking "what if ' I do lot of that what if I'd gone to doctor soon what if I'd had had mastectomy instead of lumpectomy, the list goes on. Also all I think about is how I feel, hospital appointments blood test appointments I can't think ahead it all revolves round them.i can't think about going away for a weekend or whatever in case I don't feel well. It's all what if!!!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi racer

Easier said than done, I know, but try to avoid Google. The stats are often out of date and we are all different. I have been tempted to Google many times but have stopped as info is often depressing, not what we want to hear. We all have our down days, but one thing that stuck in my mind from a Penny Brohn course was try to concentrate on the 'what is, not what ifs'. Again, easier said than done. I also create a photo book about every 3 months of good things I have done so when I look back life isn't just about hospital appointments. If nothing else, it always cheers me up.
Glad you had a relaxing afternoon. Hope you can book some more 'me' time on soon

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

Thank you George. Everyone has made me feel more positive. I need to take each day at a time and not let my mind runaway. Trying to . I am coming off steroids at the moment so don't know whether that is not helping.
The youngest has gone to a Birthday Party so a couple of quiet hours. A Mum at the party has offered to drop Him off at home so that has helped.
I will keep posted and info is helpful. I tend to google things and get worked up which I should not.?I can post on here now which will benefit me and everyone.
Enjoy the weekend everyone and hugs to everyone xx

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

Hi racer

 

I am on a break from Cape at the moment as waiting to see if I can have an op. I was started on quite a high dose which was reduced after 6 cycles. I did feel tired at first but side effects did settle and, when on lower dose, I got on very well with Cape. However, considering what we are going through,we are entitled to feel moody at times and, although I like to keep busy, I am a great believer in the odd duvet day (with 3 children, this might not be an option!)

Things that have helped me were, on a practical level, moisturisers- I tried them all- Udderley, Aveena, Vaseline, Flexitol, etc and Loperamide for the dodgy tummy. Also, I had counselling, took advantage of free complementary therapies and used a Headspace app to calm the old nerves/worries. Penny Bhrohn ( not sure of  spelling,) also run some non residential and residential courses which are good. 

It is great that the days are getting longer and brighter. January is not the most cheerful of months. 

Hope all goes well for you. Sure you will feel better once you are further in to your new regime; it is such an anxious time when we change treatments, waiting for results, etc. Keep us posted. 

Have a good week all Cape Crusaders 😊

 

George X 

 

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

Thanks Barton. Think you are right about being under stress at mo. Hubby is working extra shifts to cover the time he has had off with me. So he is grumpy and tired. Weekend home with kids as well and my hip keeps licking so don't want to go anywhere.
Hopefully things will settle down again. Keeping everything crossed.
Hugs to you and everyone xx

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

Hello racer, I'm glad you are feeling more comfortable. Yes, Cape makes me hungry too! Not so much thirsty as I have to drink lots anyway for another problem, but it is a very drying chemo - hence the sore hands and feet. I haven't noticed being moody, though! Could that just be all the severe stress you are under at the moment?

 

Glad you are not needing anymore transfusions - they take so long, don't they? The one time I had to have blood, though, I felt so much better a couple of days afterwards. I hadn't realised quite how exhausted I was all the time until I felt better.

 

I hope the week on, week off regime works for you and that you continue to improve.

 

Hugs. Barton.x

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

Hi everyone especially Barton. Usually post on bone mets thread but started cap . Had a week off as affecting platelets so having one week on and one week off to see what happens. Restarted on Thursday and steroids been reduced one a day. Cap dose is two x twice a day but half strength. Just can't stop eating at monand so thirsty . A bit moody as well that is what my family are telling me lol ! Just feel tired and no motivation which doesn't work with my three active kids.
Go for review on Thursday luckily no transfusions at mo for this week. Any advice /info would be great .
At least it is slowly getting darker later. Just need some sunny nice weather. Think it does not help .
Take care everyone xx

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

Hi there everyone....had to search for this thread! Hope everyone is doing well?

Moijanxx

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

Hi Nicky/Barton

Glad things going well for you both. Good news on your TMS, Barton. Hope you got the answers you wanted at Marsden, Nicky. I live in the Midlands, but know that hospital has an excellent reputation. Have you got liver mets?
Yes, getting ready for scans on Weds. Practising my breathing 😉. I have asked BCN to give me results as I am not seeing liver consultant until 17th Feb. Fingers crossed there is no progression.
Have a good weekend all; it is going to be a cold one

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

Hi george

Ive done a quick update on the Kadcyla thread. Basically I've had a liver biopsy just to confirm receptor status and am currently on Kadcyla. A scan after a couple more cycles should show if it's working or not - fingers crossed it is! In the meantime I have had a second opinion at The Marsden this week to find out what else is available as and when Kadcyla fails me - always one step ahead is my motto!

Thanks for asking

Nicky x

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

Hello George, that is great news. As Nicky says - you have a plan! I hope everything works out as scheduled. I hope the scans go ok next week (breathe in, and hold your breath - I get flashbacks when they do CT scans on "24 Hours in A&E" on Ch.4!).

 

Yes, everything OK with me at the moment, thanks. TM's were down to 50 at my last blood test, even after the 8(?) week break I just had. So very pleased.

 

Let us know how it all goes.

 

Hugs. Barton.x

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

Hi Nicky, yes just a matter of waiting now to see what scans reveal. Fingers crossed all stable and I can go ahead with op. Thanks for cyber grapes idea-sounds good.😊
How are you doing?

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

Hi george

Ive also been wondering how things are going with you. It sounds like you have a solid plan in place and fingers crossed the surgery goes ahead soon. Great news about the TMs, it is a good indicator for many ladies, especially if they have been done from the beginning. Keep us up to date with the op details, we can bring cyber grapes when you are recovering!

Nicky x

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

Hi Barton,

Thanks for thinking of me. Yes, it was such a relief to hear that TMs continue to fall, especially as I had convinced myself that the reduced dose wouldn't be as effective. In this instance, it felt so good to be proved wrong. Oncologist has stopped chemo due to op and I will be on Tamoxifen for a few weeks, starting next week. However, I will have to stop two weeks before op which all depends on next week's scans. 2 in the same day (lots of breathing in and out that day!). Seeing liver consultant 17th Feb to get scan / MDT results and find out if they can still go ahead with op. Fingers crossed. Never a dull moment.
Hope things are still good with you and TMs continue to fall

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

Hello George, glad you posted as I was beginning to wonder if you were OK! Wonderful news re your TM's! So your op is going ahead soon then? Please let us know when it is and how you get on. I think you are probably on a rest from the Cape at the moment to prepare for the op. I hope your hands and feet are feeling the benefit of the rest.

 

Best wishes.

 

Hugs to all Cape Crusaders. Barton.x

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

Hi Angela

Welcome to the Cape thread. I started Cape 6 months ago and have found it to be a very effective chemo so far. Like you, I suffered with fatigue during the first cycle; I remember it well. However, as Barton says everyone is different, this did subside. I was on the full dose for 6 cycles after which my Onc reduced the dose to 2x 1650 which suited me much better as I was suffering with a dodgy tummy and sore hands and feet-these were not debilitating, more irritating as, everywhere I went, my good friend Loperamide came with me. It is always an anxious time when we start a new chemo, waiting to see what the effect will be. I was very anxious this morning as I had an appointment with my oncologist to see if TMs had continued to go down on the reduced dose; they had. Anyway, good luck with this new treatment. I do hope the fatigue subsides for you. Let us know how you get on.

Hi to all the other Cape Crusaders. Hope all going well with everyone.

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

Hello Angela, try and rest as much as possible - not always easy, I know. My sense of taste doesn't suffer too much - not nearly as much as when I did FEC-T in 2011. Only two things tasted normal then - milk and pineapple! So I know what you mean. I haven't lost my hair on Cape, but it has thinned a little.

 

Hugs. Barton.x

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

Hi Barton thank you for your reply. The fatigue is really hard got so low.also taste not good don't enjoy my food. Hands and feet ok at moment as I moisturize a lot. Was on fec chemo in December 2016 for 6 sessions that was worse as I lost all my hair etc was told this time I won't which is good
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Angela60. Welcome, but sorry you have had to join us. Congratulations on completing your first cycle.

 

Unfortunately, the side effects do tend to be cumulative. However, everyone is different and you may find things settle down after a while. I have just started my 26th cycle (with several breaks in between some of the cycles) and my se's have settled down a bit. You are on the same dose as I am now on. I was started on 4000mg per day (2x2000mg), but after several cycles of that, my Onc reduced my dose to the current one because of my side effects. If you find your cureent dose unbearable (please give it a fair trial, though if you can), speak to your Onc. They would much rather keep you on the chemo by reducing the dose than have you give up on it - especially if they scan you and find it is working. You mention you are seeing your Onc next week - please be honest with him/her, and go prepared with some questions and notepaper. If you can, take a friend or relative with you as two heads are better than one at remembering stuff.

 

Let us know how you get on. Please read back through this thread for tips on treating the sore hands and feet, and for answers to any questions. Or post again asking anything - there is always someone who can either help or point you in the right direction. Everyone understands it's a distressing time for you. Changing treatments always is.

 

Hugs and best wishes. Barton.x