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: 328
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: 1,977
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: 4,176
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: 1,590
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: 498
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: 311
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: 74
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: 8,341
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 💟💟💟💟💟💟
Member
Posts: 6
Registered: ‎18-10-2018

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

Hi Everyone, after seeing my Onc last Friday she went ahead with my 3rd prescription of Cap as the side effects had cleared up after delaying the 3rd cycle.for a week. I thought she may have reduced the dosage from the max of 2150 mg x 2 a day. But she wanted me to carry on with that dose, I'm feeling ok but only in to the 4th day. The Onc said if I feel bad again to ring the Hospital for advice. She said I should have done that before, but I hadn't because I expected to feel yucky.

My TMs had gone up quite a lot but the last 3 blood tests that were taken didn't register if the TMs had reduced so I had another blood test last Friday and will get the results at my next review.

Lynnq, I'm pleased to know there is another Elvis fan on here. Did you go on the Candlelight Vigil ?I've done that twice, it was very moving. Had to stand in line for hours to get to the Gravesite. It was beautiful and the floral tributes lined all the way up the drive to Graceland.

The skin on my fingers have started to crack and bleed, but I can put up with that. I do feel very uncomfortable after eating a meal, I know I should have smaller portions, but the trouble is I haven't lost my appetite ! Its encouraging to read all your experiences whilst on Cap. I'm pleased that most of you seem to be coping well on it. 

Until the next time.....love Carolyn

  

Member
Posts: 498
Registered: ‎01-05-2012

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

Hi George

Pleased u have been having a good time holidays etc. Regarding CT scan do you get injected with a dye? I do so it is always hunt the vein. Never been given a jug of water to drink.

The hospital I attend only give paclitaxel taxol for short for 18 weeks maximum I asked the nurse last week at the chemo unit. By a year don't think I could cope having it for that long.

Hope it went well today.

I will pop in every now and again to see how the cape crusaders are getting on.

Linda

Member
Posts: 498
Registered: ‎01-05-2012

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

Hi Lynne

I was only on cape for 10 month before it stopped working. Thank you for the explanation regarding UTis. I used to suffer alot of cystitis when I was young. Hope I don't get it again. Will just have to wait and see.

Before cape I was on EE for 3 years 8 months. I was lucky I did not get any problem with mouth ulcers etc.

Good luck with

Linda
Community Champion
Posts: 8,341
Registered: ‎26-10-2015

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

Hello George

Nice to hear from you and what an inspiration you are to us cape crusaders. ..all those holidays ..just keep enjoying them ..
I read somewhere that oncologists strongly believe now that a few months on E and E help the cape work better ..but I wish I had cape rather that waste 5 months on e and e which I think fed my mets rather than helped them!
Hope this great thread becomes a nice daily thread with lots of friendly banter. .I know cape is one of the most popular regimes so ladies stop just reading and join us with a hello at least.
☺☺☺☺☺
Member
Posts: 328
Registered: ‎28-01-2016

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

Hi Lyndyloo, thanks for thinking of me. Sorry I have been a little quiet lately - due to the fact I have been enjoying myself with lots of mini breaks, theatre and cinema trips. I just wanted a bit of a cancer holiday. However, back to reality as, at this moment in time, I am in a waiting room with lots of others preparing for my CT scan by drinking a big jug of water ( shame I couldn't slip a little drop of gin in to my glass😂). The original.date for my scan was the end of October, but i postponed it as I had some little treats planned that I didn't want to cancel and i am sure a few weeks won't make much difference. I will get the results, along with 2 sets of TM readings 2 weeks tomorrow🙄Regarding TMs mine have always been super reliable. I am a little anxious as they have been rising, slowly but surely, since May. However, I can't complain as this is cycle 20 of Cape so I know my 'luck'will run out shortly.
Lyndy, I was on Taxol for a year and found it 'doable' although I did suffer from nausea and had to take anti sickness tablets. Apart from peeling hands and feet, which I have learned to live with, SE s have not been too bad on Cape. Another reason
I would like to continue with the treatment.
Regarding E + E combo, it didn't suit me either. I know a lot of women have had success with this treatment, but I wasn't one of them. I really suffered with mouth ulcers that made.my life a misery and TMs shot up when I was on E + E.
Hope all you ladies are doing well. It us good to see how active this thread has become again.
Have a good week all

George x 🤗
Community Champion
Posts: 8,341
Registered: ‎26-10-2015

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

Hello lyn
Nice to hear from you and that you are doing well. On cape too. . .I'm coping well and in fact I'm now on my week off and missing the peachy pills ..feel so tired so hoping my bloods are ok on Wednesday for cycle 5 to start .
I've never had tumour markers but might ask on wednesday if I should have them now.
When I was on E and E for 5 months I couldn't eat or drink either. .lost 4 stone ..but it's creeping back as I'm always starving on cape. .like a little gremlin thinking or eating food !! Says me munching a veggy pizza right now! Oink oink 🐖🐷🐽
Member
Posts: 609
Registered: ‎10-10-2012

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

Hi Lyndyloo

 

UTIs are Urinary Tract Infections...cystitis etc.  I am prone to them and have Interstitial Cystitis which flares up periodically so we were almost expecting them.  We were on holiday at the time and I was just four weeks after IV chemo (pacitaxitel) ... it was very hot and I wasn’t coping with the heat too well, nor resting enough.  We really should listen to our bodies shouldn’t we.

 

there are a couple of ladies who attend the support group who have had good results with tomoxifen so hope you do as well.

 

how long were you on Cape for, and thanks for the reassurance re tumour markers, 

 

x

 

Member
Posts: 498
Registered: ‎01-05-2012

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

Hi Lynne

I am due to start tamoxifen tomorrow. Can I ask what are UTIs?

Regarding tumour markers I was the same last September they were about 300 when on EE which stopped working. Had a month off before starting cape tumour markers went up to 1000. It was quite scary I remember. It is good that they dropped quickly.

Like you my markers were a good Indication when treatment is working.

Lobda8
Member
Posts: 609
Registered: ‎10-10-2012

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

[ Edited ]

 

 

  Hello everyone.. have just read through all of the posts after a few weeks absence.

I started on cape about six weeks ago and have just started my third cycle.  Not many side effects and the ones I have are manageable so far.

just wondering if anyone has had a Tumour marker experience like mine.  I have had SBC for almost 6 years and during that time TMs have always been a good indicator for me.  Onc tells me not for everyone but in my case he believes so.  

Anyway TMs started to rise about a year ago.  Stopped Letrozole and started E& E combo which didn’t work, they continued to rise.  I then had 16 weeks of Pacitaxitel, my TMs stayed at more or less the same level for the 16 weeks - didn’t decrease much at all.  They were 229 at this point.  I tried Tamoxifen but only for about three weeks the UTIs were horrible...still getting over them now.  Then for  7-8 weeks I had no treatment.  When I next saw Onc they had increased to 1209...a rise of almost 1000.  I was shattered.  Then last week after just 2 cycles of Cape they had decreased to 288.  A huge drop.  I asked the Onc if the spike could have been a mistake, he said that because I had 8 weeks with no treatment he thought that could have caused the huge rise.  After the first cycle my white platelets were a bit low but after another blood test  - done there and then - they had risen to just over ‘the line’. so they gave me my second cycle.  I have 2000 x 2 daily.

 

the Onc told me that it wasn’t just the TMs which had improved but several of the readings had improved...I have always been a bit anaemic but that had improved etc. And my energy levels have increased, even did some baking with my grandchildren over half term. - all 5 of them - then took 4 of them to the cinema and KFC the day after...

 

so based on this we are assuming that cape is working for me.  It seems such a huge change in the TM numbers both up and then down - just wondering if anyone else had experienced this.  I am pretty cautious and don’t want to get excited too quickly.

 

 

Graceland Girl - what did the Onc say, has he and you decided to continue with the Cape.  I am also an Elvis fan, been to Graceland once..loved it.  We actually stayed at the Heartbreak Hotel.

 

Carolyn52 - wholeheartedly agree about E & E being devil pills, the mouth ulcers were horrendous, I lost so much weight as I found it difficult to both eat and drink with them.

 

Thanks for posting everyone

 

Lynne xx

 

 

Member
Posts: 498
Registered: ‎01-05-2012

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

Morning George

Just wondering how you are getting on. I still read through most threads even though I am not on cape now. Have your had your scan yet? If you have I hope it was good news. I have had 10 cycles of taxol down to have 12. I noticed you have also had taxol how did you find it? I am now struggling to be honest.

Linda
Community Champion
Posts: 8,341
Registered: ‎26-10-2015

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

Hello ladies
Thanks for joining it's nice to hear from you and the side effects etc.
I start my fifth cycle next week too .. I have liver? Lungs and adrenal glands mets as well as extensive bone mets but my main worry is the brain mets as I agreed with oncologist rads on the brain was not really much help ..the stage they are at. Apparently cape does break through the brain barrier and there is hope it will stabilise them for a while. I have had them since March 2018 . My balance is a bit wonky and I have tingly tongue and face but I deal with it on a day to day basis. I am on a dosage of 1600 x 2 daily which I think is small but does give me a quality of life.