Member
Posts: 8
Registered: ‎18-10-2018

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

Hello Sarah Senior... hope you are feeling a bit better now. I'm on my 3rd cycle of cap and for me its the feeling of a complete lack of energy thats the worst side effect.. Apart from having intravenous chemotherapy I have been on letrozole and exestamene which didn't work, then tamoxifen for a few months which then stopped working..hence we are now trying cap. As for the tumour markers, I can't actually remember what number they gave me. I think it was around 400 which was a big leap from the previous number. They haven't taken the TM in recent blood tests...the Onc omitted to request them, but they requested them on my latest blood test, and should get the up to date info at my next review in a couple of weeks.

All the best..Carolyn 

Member
Posts: 15
Registered: ‎17-07-2016

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

Hello to all the ladies on here, I of course didn't know Barton but send my condolenses as it is always sad to hear when someone has lost their struggle.

 

I am now joining this thread as having been on letrozole and pabociclib for only two months it appears that it wasnt working for me sadly so fingers crossed that the cap is more effective.

I am only starting my second week and feel out of sorts so hoping that my body adjusts to it.

 

I see that a number of you mention tumour markers and just wondered that for those of you whose are going up what level is normal and how much do they tend to go up.

 

I guess that I am struggling at the moment as all I can think of are the oncs comments in relation to timescales due to the fact that the first traetment didnt work. I am finding it hard at present as well as much as i have a very suportive network of friends both my daugters have gone away in the last couple of months one to go travelling and the other to go to uni and I know that my youngest is struggling with things.

 

Hopefully I can take some comfort and support from this forum and knowing that so many of you are doing well on the treatment.

 

xx

 

 

 

Community Champion
Posts: 8,519
Registered: ‎26-10-2015

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

Oh George. .you do so well on cape ..I'm hoping it's going to work a little bit of magic for me. I start the peachy pills again tomorrow. .feel better on them. The week off i feel tired and twitchy! Weird.
I've had no trouble with the trots or feet yet ..obviously will sometime. Not that impressed with udderly cream that was recommended though. ..find Johnsons baby lotion just as good at £1 a pop !
Member
Posts: 332
Registered: ‎28-01-2016

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

Hi Waffles

I echo your sentiments regarding Barton.
Do PM me if you get a chance as I have been thinking of you.
Member
Posts: 332
Registered: ‎28-01-2016

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

Hi Green Damsel and welcome. Although I am sure you would rather not be here, you will get lots of support and good advice from all the lovely ladies on this thread. This is my fifteenth month on Cape and, I have to say, it has been the 'easiest' chemo I have been on. SEs for me were the big D when I was on the full dose during my week off. Dose lowered now so, with the help of Loperamide, I am able to control dodgy tummy episodes. The other side effect, which I am suffering with at the moment, is sore feet and hands. I moisturize regularly and sleep in socks to try and help feet.
Regarding hair loss, I do not know anyone who has lost their hair on this chemo.
Do let us know if you have any more questions and good luck with your treatment.

George
Member
Posts: 266
Registered: ‎26-07-2015

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

So sad to hear about Barton.........fran. I never met her but of course read her posts on these forums. She was always so welcoming, helpful, and caring. She is safe now of course, but her wonderful sister will miss her down here. So hard to miss loved ones. But heart warming to read all the warm comments. She was loved and so appreciated. Fly high, Fran. 

 

mo

Community Champion
Posts: 8,519
Registered: ‎26-10-2015

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

I'm sure fran is looking down on us and grateful for all the lovely comments from ladies here ..her funeral is 21st November here in Exeter. ..will be a quiet one but I hope to go to show my respects to a lovely lady that was taken so young. (61 )
Rip fran xxxx
Highlighted
Member
Posts: 1,415
Registered: ‎18-11-2015

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

Hi Carolyn,
So sad to hear about Fran. She was a lovely, kind and intelligent woman. My thoughts are with her family and friends. Waffles x
Community Champion
Posts: 4,532
Registered: ‎01-05-2012

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

Hi Carolyn

So sorry to hear about Barton/Fran, another lovely lady lost too soon. Do send my condolences to her family if you are in touch and sending hugs to you. Thank you for letting us all know. 

Nicky xx

Community Champion
Posts: 8,519
Registered: ‎26-10-2015

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

Hello everyone that has joined us on this thread. I just hope theseI little pills keep us all well for a long time. .I'm finding it a easy regime to master ..as far as hair loss is concerned I've not heard anyone loose their hair ..maybe a bit thinning but everyone else is different. I don't color mine these days and avoid hair straighteners too .
Back on peachy pills Sunday. .anyone else find the little ones a nuisance. .because of my dosage I have 2 biggy ones and 4 small ones twice a day!
Community Champion
Posts: 8,519
Registered: ‎26-10-2015

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

Hello George
Its nice to hear from you ....fran really enjoyed your pms and your holiday stories. ..it's good that you keep so well and energetic. ..
Keep popping the peachy pills ! ☺☺☺
Member
Posts: 29
Registered: ‎12-03-2018

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

Hello ladies,

 

hope me you don’t mind me joining in, especially having read the sad news about someone you obviously all cared for. 

I started cap today after EC and Pax chemo, surgery then rads.  Apparently the cap is because I’m triple negative and the chemo while it had shrunk the tumour significantly there were still live cells.  My onc wants me to to this for 6 months (8 cycles) if I can tolerate it.  I had minimal side effects with the other chemo but the daily dosage of this stuff and only a week off in between makes me wonder if I could be in for a rougher time.

 

Any advice on practical tips for being able to stay ‘normal’, I’ve only recently really felt like I was no longer a patient and this feels a bit daunting.  Also am I likely to loose my newly returned hair, the chemo nurses were a bit vague when I asked this and said ‘maybe, maybe not’ which wasn’t the most helpful answer. 

Member
Posts: 332
Registered: ‎28-01-2016

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

Hi Carolyn,

Thanks for letting us know about Barton. Such sad news. Fran sent me a number of private messages which were so supportive; she seemed a very kind, thoughtful and warm person. I think in one she mentioned how you had joined her to celebrate her birthday. Please pass on my condolences to her family.

George
Community Manager
Posts: 1,993
Registered: ‎01-05-2012

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

Thank you Carolyn for letting us know about Barton.  Please pass on our condolences to Bartons family.

 

If any of you would like to talk to someone, our free Helpline is here to offer support. 0808 800 6000.

 

Best wishes
Anna
Digital Community Officer

Community Champion
Posts: 4,307
Registered: ‎01-05-2012

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

Carolyn, I'm so sad for you and Barton. I know you will miss her. Barton wave to us with your beautiful angel wings. You will be missed by many! FF
Member
Posts: 1,598
Registered: ‎01-05-2012

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

I am really sad as I had met Barton a few times over the past two years. She was a lovely, kind and compassionate person. Fly high, free of pain and tiredness Fran.
xx
Member
Posts: 505
Registered: ‎01-05-2012

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

Morning Carolyn

So sorry to read this. She was so welcoming and give me good support when I started cape last October.

RIP Fran
Member
Posts: 321
Registered: ‎30-09-2017

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

Hello Carolyn, I am so very sorry to read this, and for your loss of a lovely friend. I never met Barton but as you know I was very fond of her and I missed her greatly when she stepped back from the forum. Sending you, and her family and friends my condolences. RIP Fran xxx

Member
Posts: 75
Registered: ‎28-06-2013

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

Oh Carolyn, so sorry to hear this sad news about Barton. As you said, she will be at peace now. Please send regards to family and let her sister know we are thinking of her.

xx

Community Champion
Posts: 8,519
Registered: ‎26-10-2015

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

Hello ladies
Well this is a post I am not looking forward to writing but I think this is the better place :

BARTON (fran ) passed away at 10.10 pm last night and I know a lot of you will remember all the help she gave over so many years here. We met regularly for coffee and cheese scones and I am so honoured to have had her kindness and friendship for 2 years . I will miss her so much. Her chemo stopped working May 2018 and she has been living a very quiet private life with her devoted sister Trish giving 24/7 palative care .
Rip lovely lady ....you will be missed. .fly high and pain free 💟💟💟💟💟💟