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Xeloda / Capecitabine - Your Top Tips, please?

Member

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

Hi I hope you dont mind me joining your thread to find out more about Capecitabine.  I have just been diagnosed with Secondary BC after 9 years and several local recurrences.  Due to start Capecitabine in two weeks so finding the advice very useful. 

Member

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

Hi everyone,

Well I have just completed my first cycle and have to say that on the week off I felt wonderful and was pleased that some of the minor SE Ihad ie feeling wobbly and ligt headed disapperared as I had convinced myself that the cancer had spread.

 

It is amazing how over active the brain becomes in the middle of the night as I lay awake !!

 

The onc is sending me for a bone scan just see if there is any other activity so fingers crossed that comes back clear.

 

I am now trying to get to the point where i feel able to make plans in the future and I spoke with the onc about travel. He dismissed some of my ideas such as a cruise due t high risk of infection but yet said that a trip to South Africa to visit family may be an option. He has advised waiting to see how effective this treatent is but i so hope that I am able to make this trip. 

 

I'm hoping that as  i start my second round that my energy levels don't dip and have some nice activities planned.. I'm heading over to Harrogate today and very much looking forward to it..

 

I think it was Lynne that mentioed a possible meet up in Yorkshire for coffee and if this were to go ahead I would love to meet some of you ladies.

 

Take care everyone

Sarah

 

Member

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

Hi again everyone. Just finishing my third week off and off to pick up my fourth packet of pills tomorrow. This week has been as bad as when I am taking the pills but compared to many my SEs have not been too bad. Hope that doesn’t mean the cape isn’t working - tho I have read that SEs don’t affect results. Hoping to get a TM reading tomorrow which will give me further reassurance- they’re have been on the downward trend so far.

Graceland Girl hope that you’re feeling better and that they reduce your dosage which in turn reduces your se’s

and George so pleased that you are remaining stable after 15 months makes us all very hopeful. I agree about planning as well, I have always been a planner - it is our Golden Wedding on Boxing Day and we are planning a party in March.... when life isn’t so busy and the weather is better...can’t expect people to travel at such a busy time of the year. I have sent out ‘save the day’ invites. The pub we want to have for the party gets booked up very quickly so daren’t leave it too long.

Best wishes Carolyn and and Happy girl.

Just wondering where everyone lives I am in Yorkshire.... close enough to anyone for a coffee somewhere???

Hugs to all

C

Member

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

Thanks for your good wishes, Carolyn and Happygirl. Cape has been good to me so far so I can't really complain about SEs, just deal with them. This is my new 'normal' so got to get on with it. Also, it means i can plan the next 3 months of my life until the next scan. I think this is what non cancer patients don't always get. I can't plan my summer holidays now as I don't know where I will be with my treatment so always have to wait until nearer the time.
Sorry, Carolyn, can't help with your week off. I bought myself an orange squeezer and have a glass of fresh orange juice every day with my breakfast, only a little thing but it keeps me happy. Also, I look forward to enjoying a glass of wine or two during my week off, not advocating this for everyone but it works for me- the simple pleasures. Speaking of which, just enjoying a bacon roll and cup of coffee in a lovely cafe in Birmigham.
Have a good weekend all

George 🤗
Community Champion

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

George I'm so pleased for you as you lead such active lifestyle with the peachy pills.
I wandered whether on the week off the pills. .I should take vitamin c or something to keep my energy going
Obviously I won't take anything heavy with the cocktail of pills I use .any ideas ladies?
We are having a new lady join us ..come on Bon ..say hello xxxd
Member

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

Well done big hugs
Member

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

Hi all

I agree with all the earlier comments. SEs are often at their worst during the week off which is a pain. I had bout of big D on Friday and sore hands/ feet on Saturday. However, after 2 Loperamide and a dioralyte I felt much better. Got to keep soldiering on, especially if peachy pills are working.
I had scan results yesterday which showed everything is stable, no progression. Phew, what a relief as I had convinced myself that after 15 months Cape my 'luck would have run out. TMs have risen slightly, but only by 4 points over 7 weeks so not too bad. Onc continuing with treatment and has agreed to give me an extra week off during the Christmas break ( whoop, whoop).
Hope SEs are easing for you all.
Have a good week

George 🤗
Community Champion

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

I finish my 2 week cycle again Sunday and yes hate that week too ...think it would do us good to rest the peachy pills but it doesn't. .takes a few days back on them to feel better. Think I feel the best on days 8, to 14.
But if they do what they say on the tin. .we must have faith in them and hope they are killing the blighters that have invaded our bodies. .
Member

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

Hello Graceland Girl,

You are not alone with these SE's, I have just finished my 2nd cycle and my breaks seem much the same as yours without the breathlessness. I do take an antisickness pill in the morning even when on a break because it helps with the nausea,  so it might be worth a try. 

Pleased to hear the Doc will review your dose it seems to help some cope better with SE's from what I've read of other Cape ladies on here, so fingers crossed things improve for you soon.

I feel the hardest thing is to continue treatment knowing it makes you ill. But we have to focus on the possible improvements and that's what helps us keep going.

Hugs and keep going

Happygirl

Member

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

Hello All,

 

I'm  on my week off from cap after completing my 3rd cycle ( 2150 x 2 a day ) I definately feel worse when on the break, which I thought would be the time to feel better. I am so tired, breathless get stomach ache together with the big D don't  want to eat and consequently cannot stand drinking all I should on an empty stomach as it makes me feel sick. I went to the Hospital today for my blood test and went to the Emergency Assesment Room where they put me on a drip for 2 hours. The Dr I saw took lots if notes and he said my Onc might reconsider my dosage when I have my review on Friday.

 

In the meantime hope all who read this are feeling well and I look forward to hearing if any other ladies have the same SEs. By the way...do we have any men in this thread as I understand men also can be affected by breast cancer.

Love Carolyn xx

Member

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

Hi again everyone, hope you’re all as you can be.  It’s cold, wet and miserable here today in Yorkshire.

 

like you Carolyn I feel the cold more on Cape, I was on Letrozole for almost five years  - didn’t have hot flushes but never felt really cold.  

 

Hope that the liver biopsy goes well for you Bel. and that you can start your cape and start to feel better.

 

This is my week off on my third cycle - Finished Friday and had a bit of the big D for a couple of days, also really tired and a bit shaky but today I feel much better.  Will be collecting my fourth cycle on Friday after my bloods on Thursday, so fingers crossed for good results.  Had low neutrophils after my first lot but when I asked the nurse if there was any supplements or diet changes which would help she said that there wasn’t. - just one of those things.

 

all the info about doseage are very interesting.. thanks for that everyone 

 

lovey phone call from my son today who says not to Christmas shop for food, him and his partner will shop and arrive on Christmas Eve and he will cook on Christmas Day- so I will just get a few extra treats in.

 

Xx

 

 

Community Champion

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

Hiya bel
I'm sure once you start cape you will feel better and able to do more. .I think I'm better now on it.
Only trouble is taking letrozole for 3 years. .I was always hot now I feel the cold. Maybe it's the cape or the heart pills I take but I'm sat here with a chunky jumper on and the heating ! Not complaining though. Also feel the ugg boots need airing .
Just got a scan appointment for 8th Dec. .think I will ask for results to wait until after Xmas as wouldn't want bad ones to spoil Xmas!
Member

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

Hi all 

good to see so many positives around cape chemo. I have heard this morning that I can’t start cape till I’ve had liver biopsy with is now scheduled for 30th. Cape to start on 10thDec!

thanks for info on biopsy still a bit nervous but just want to get it started.

ive now had 7 weeks where I’ve been shaky, lightheaded and wobbly so not been able to do much without a place to lie down very nearby! I’m hoping that Cape will sort me out and make me able to get out and about more.

In our area we don’t have a SBC Nurse so I do feel very isolated. We so need one but no money! Apparently!! 

Mad when your support so well with primaries then bang once you get secondaries you’re on your own!

Hoping to get some further support from palliative care team at hospice.

Keep well everyone

Bel x

 

Community Champion

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

There was a very interesting article about low dose of cape working really well for years ..it was on my Facebook page. .I will try to load it here for you to read. ..
Member

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

H Kirky

Thanks for the info and link to the calculator tool, really good.

I don't think the dose can  be the same for everyone because we all seem to have different tolerances and some have other health problems. I am managing my SE's 'reasonably' well except the fatigue and I don't like spending day after day in bed unable to function because I feel so unwell most of the time. There seems to be many women who have or are taking reduced doses, so it can't be an exact science. AND holding onto that thought I will be able to move forward with the help of my oncologist and the lovely support of this community.

Keep smiling 

Happygirl 

Member

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

Hi. Re dose. The max dose is 1250mg x BSA. Good calculator https://halls.md/body-surface-area/bsa.htm
I am 5 ft 10 in and 12 stone 6 so large and my max dose was 2500 twice a day. I ended up on 1500 and this kept me stable for 20 months. Good luck xx
Community Champion

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

Hiya
I found on my week off the peachy pills ..tins of rice pudding helped me with the wobbles and tirednes s etc or sweet things ..it's not good medical advice but what works for me ..suits me !
Member

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

Hi Lynnq

Thanks for your response and good luck with on your Golder Wedding Anniversary planning something to look forward to and enjoy.

I don't know how the medics estimate doses, I was told height and weight. I am 5 feet small and weigh 70k like you with gastrointestinal probs which were caused by first line chemo. We just have to trust them when they decide and hope they will adjust if needed. I hope your week off is as good as it can be and the big D goes away soon.

Keep smiling

Happygirl X

Member

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

Hello Happygirl...interesting to see that you are on the same dose as I am.  The Onc told me that he was starting me on a low dose because I have gastrointestinal problem which causes diarrhoea and since it can also be a SE of cape he didn’t want to aggravate it.

I must say that I didn’t think that it was a low dose but I am quite tall (5’8”) and weigh about 72k so perhaps for me it is.

I am just coming to the end of my third cycle, starting my week off.  I am feeling tired and have the big D today so taking it easy.

Thanks for responding Carolyn - I think that I may be the same in feeling worse during my week off... a bit shaky as well today.

 

 I am also trying to get into Christmas mode,   It is our Golden wedding anniversary on Boxing Day and we are  having a family get together, just close family and our children will sort the food.   Hoping to have a bigger celebration in the early spring when people are more able to travel.  Really want to stay well for that...

 

Hugs  to all Cape users

 

xxx

 

Member

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

Hi Caroline,

Good to hear your Cape is not causing too many problems and you have got to your 5th cycle (well done) after horrid previous treatments.

I'm just coming to the end of my second cycle but not sure it's any better only that I am managing the SE's a bit better. Like you I am finding 'Sleeping' all a part of the course but not eating so much as nausea seems to govern that even though I have tablets that help. I'm on the max dose for my hight and weight  2000 x twice a day. So I hope to discuss a reduced amount when I see the oncologist on 26th then the next cycle begins. I am determined to give it a go and apreciate all the sharing that goes on in this forum it really helps. Thank you.

Wishing you well as you continue your journey

Hugs

Happygirl