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Capecitabine, desperately need feedback on this drug

63 REPLIES 63
Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Louise, 

I see your tumour markers are quite good as well, so pleased for you. 

My BCN advised me not to take Loperamide during the two weeks I'm taking the Cape and to stop the Cape if diarrhoea got really bad, 4 times or more a day, although I'm not really sure why, I'll ask her to explain why next time I speak to her. Although now I'm ok in that department thank goodness. 

So sorry that you have the hand problem, are you using the cream with urea in? It sounds really awful, maybe gloves would help, perhaps some of the other ladies can help you more than I can who have experienced it themselves. 

I wish you all the best and hope you improve as time goes on. 

Definitely keep in touch 

Shirley xxx

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat

Thank you for your reply. I am impressed with you tumour markers 26.3 that is within the normal parameter range I believe :-). Mine were 86 from blood result on 20th or 21st Dec.....can't remember which day I had the test.

May I ask ask why you take Loperamide only on your week off could you not take during capecitabine cycle?

I have just completed my 4th cycle and now started my week off, so hoping hands improve as very frustrating I struggle to do anything :-(. Even trying to take a cap off a bottle of squash I struggle. Can you were gloves would that benefit.

Great to hear you had an enjoyable Xmas etc and I wish you well, keep in touch.

Louise xxx

 

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Louise, 

I also had an enjoyable Christmas thank you and I wish you a happy and healthy New Year.

It's interesting to hear that you too have stomach aches, this morning I spoke with my BCN and told her that last night I was again having stomach aches, although they never really stopped, this started at 2am and only eased when I'd had very loose stools twice in the morning.  I was worried that the cancer was spreading again and that the Capecitabine had stopped working, but when I was finally able to have my blood results from 21st December all seems well. I was worried because these symptoms happened when my first initial drugs stopped working. 

Tumour markers now down to 26.3, I'm not anaemic, white blood cells fine, platelets up to 236 and my liver is fine. She said loose stools are because of the Capecitabine, so I seem to be OK,  but if I visit the bathroom 4 times or more then stop the Capecitabine, I'm on day 13 today so hopefully I'll be able to complete this cycle 7. I can take the Loperamide in my week off.

So if anything like this happens to you then don't drive yourself mad with worry, hopefully like me it's just the drug. I hope you've got a really lovely BCN too.

Pleased you're feeling mostly well, and we are indeed here for each other, let me know how things continue for you. 

Sending hugs and love

Shirley xx

 

 

BoxerMum
Member

Re: Capecitabine, desperately need feedback on this drug

Louise

That’s great to hear that you’ve got back to some kind of normal and your appetite has settled down now.

I saw oncologist today & she’s not convinced that Cape is helping with the cancer - says I should be feeling better than I am & will check with scan what’s happening. Thinks there may be some neurological involvement that hasn’t shown on previous brain MRIs. My imbalance is still a problem but physio has given me some exercises to try & help with strength in my legs (depleted thanks to steroids) 

Happy New Year to you all - wishing you best of health with Cape

Alison x

Tracy De Boorder
Member

Re: Capecitabine, desperately need feedback on this drug

I know how you feel I'm taking the pills religiously every 2 week but don't feel great and they told me today the cancer is still active not sure what is next my cases goes to MDT on 11th to see what else can be done.

I'm in hospital right now which has made me realise how lucky I am really with all the other patients.

Happy New Year to you all, hope you're all pain free and comfortable and safe. Xx 

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Alison

My appetite has returned and I seem to be eating huge amounts, I had loss half a stone however weight now increasing. I'm normally around 10stone 8lbs but went down to 10 stone 1 lbs!!! Thank you for your thoughts. I am happy with how much I am eating as I am back to what I was eating before hand 🙂

Your body will adjust to the chemo tablet but takes time, I feel with time my body adjusts to the tablet and to be honest I am able to lead a near on normal life/routine, with a few ups and down, listen to you body and if you need to rest you must etc.

Keep in touch Lou xx

BoxerMum
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Louise

thanks for the explanation.

how have you been feeling since the transfusion? Has your appetite been sustained since? Are you happy with how much you are eating?

It sounds like you’re doing really well. This drug still worries me, that I’ll never feel normal again - I still feel so weak & can barely function normally. 😢

 

best wishes

Alison x

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Shirley

My Christmas was good/ok I hope yours was too 🙂

Yes definately worth taking this tablet no doubt! I sometimes have stomach aches during the night and once been to the bathroom this seems to ease. I had an episode of an upset stomach which lasted 2 days about 3 weeks ago but I took the anti sickness and other tablet they had kindly gave to me to ease an upset stomach and that seems to have done the trick. Other than that I too have been feeling ok sometimes my hands have worse days and sometimes ok, but this doesn't stop me doing anything, on occasions my partner has to open a bottle or tin.

Thank you for your kind thoughts re my tumour markers, the tablet works wonders so as long as stable or getting lower I am sure, let me know once you find out. We are here for one another through thick and thin.

Love and hugs

Louise xx

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Alison

Yes I am in the UK. When I say tumour markers they are also named CA15-3, your Oncology I guess would be requesting these when you have a blood test, you just need to ask for the result. What CA15-3 forms I understand is a trend between scans - scans tell the story but CA15-3 gives guidance in between, if they go up and up then the treatment is not working if they are stable or going lower then treatment is working. Anyway that how I understand these markers.

Hope you had a nice Christmas and best wishes.

Lou xx

BoxerMum
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Shirley, and Louise!

so good to hear that you’re both doing well on Cape. I feel that my breathing has definitely improved (I have lymphatic involvement - lymphangitis carcinomatosa) am just still feeling generally yuk, awaiting blood results tmrw.

I’m curious, are you guys in the UK alike me? If so I’m wondering about tumour markers - I’ve never been told about these, they have never been mentioned. I’m wondering if it’s a health trust matter or whether I just need to ask for them.

I’d be interested to know.

best wishes

Alison x

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Louise, 

Hope you had an enjoyable Christmas and it's so good to hear that you're doing well with Capecitabine. 

Excellent news about your tumour markers, it's definitely worth taking this tablet . My last blood results which were taken on 21st December were fine,  my BCN was away though so I don't have any exact numbers which is slightly annoying, so I'll have to wait. 

However I've been feeling quite well so assume the tumour markers are down,  I just still get stomach aches in the early hours, but stops after a visit to the toilet! 😄 I have wondered if it's just me or the fact that I had the spread to my liver, initially from my bones.

Let's hope we all do well on this drug and it's really lovely to know you're doing well Louise, long may it last. 

Best wishes and huge hugs to you too

Shirley xx

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

HI Timmycat

How are you, still coping with Capecitabine I hope? And I wish it to be working wonders for you, I read that you tumour markers were down from 593 - 183 that is fantastic. Its worth taking this tablet, mine are down from 129 (highest) to 86 last week. 

I pray that this continues for me and everyone else dealing with Capecitabine.

Best wishes and huge hugs

Louise xx

BoxerMum
Member

Re: Capecitabine, desperately need feedback on this drug

Louise 

Thanks so much for your reply - it’s reassuring to know that your transfusion helped. The appetite is that thing that is worrying me most.

I have next appt with oncologist New Year’s Eve so will see what they recommend - will keep you up to date.

I am finding the lack of balance very debilitating and so walking is difficult. I just want to feel some way normal again ☹️

BoxerMum x

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi BoxerMum

Nice to hear from you, and it seems we are in a similar place both being on cycle 3 of Cape.

I also lost my appetite, eating  near on nothing. I am also anaemic I had a blood transfusion yesterday they thought this would help, my goodness it has helped, I ate a bowel of pasta last night and had a crumpet for breakfast so yes have the transfusion it has helped me, fingers crossed it continues to help.

Merry Christmas and hope you feel better.

Louise x

BoxerMum
Member

Re: Capecitabine, desperately need feedback on this drug

So glad to see this thread. I’m on Cape cycle 3 and am having terrible balance issues to the point where I feel I can barely function.

Eating has become a real stress and concern, like you say the taste of the supplements is beyond me. How can they make Quorn taste like real meat and yet they can’t manage to make a palatable protein supplement for the malnourished.

I am now anaemic and have been told a transfusion may be necessary - has anyone had one & did it help how you felt? 
man looking for hope that I won’t feel this bad indefinitely 

Boxer Mum

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Jaybro

How are things going for you? You have great results from Cape, wishing that continues for a long time.

I am on cycle 3 1st cycle no side effects 2nd cycle started to have problems with hands, then had my week off which helped the hands, having starting 3rd cycle and am on 2nd week my hands, bowels, blood shot eyes and tiredness really kick in, but I can cope with all of these side effects. I have a CT scan on Monday and will also have blood taken to measure bloods and CA 15-3 (Tumour markers), last CA15-3 result was down from 129 to 110 then on week off rose to 122 however still lower than 129. I am praying this treatment works, even my partner say a little pray every night for me. I am lucky to have been born in the UK, had a great job, children and family, house and I think of women/Children on the streets in India, Afghanistan, people having to try to cross the channel in a small boat risking their lives I am lucky!! 

For everyone else on Cape I wish you well 🙂

Louise xx

Jaybro
Member

Re: Capecitabine, desperately need feedback on this drug

Hi fellow capers

Just finished cycle 10, So far so good. Blood markers 128 down to 19 or 20 the last 4 blood tests; tumour markers are new to me but they are down from 24 to 6 - room for improvement. MRI shows brain is fine and tumour has reduced a little bit (little tumour, smaller reductions I’m told). Side effects are obsession with bowel behaviour and fatigue at any time. I’ve done a bit of driving but have to go by how I feel so I’m not yet back at the gym/pool. I’m longing for a swim but doubt I could manage a length as I get so breathless. I managed to walk to the end of the cul de sac, all of 5 houses, and had to sit on someone’s wall for a bit!! Still, I can build that up. PPE still grade 1 which is great. Now I’ve started hot flushes - can anyone guide me on that please? I had such a quick and easy menopause, I’m a bit resentful I should get them now!!

I’m still dealing with it well emotionally but I can’t rid myself of the dread of each consultation for fear I’m told it’s not working any more. I reason that they would ring if blood results were unusual but logic doesn’t help.

Hope it’s also going well for everyone else. Louise, I’m sure lack of side effects just means you are very fortunate. I’ll keep my fingers crossed for you.

Jan x

 

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Thank you Timmycat

I am so pleased the Capecitabine is working wonders for you it is remarkable and I wish/pray it does this for me. My next blood test is just under two weeks away where they measure the CA15-3 marker. I have what I believe to be no side effects maybe a little tired, this worries me as I convince myself the capecitabine is not working as I read many stories on here with people suffering. I need some positive news from blood tests and scans, like everyone on here does.

People ask me what I would like for a Christmas present which is lovely, but all I want is for the Capecitabine to start working.

Thank you so much for the positive vibes which are desperately required. I am sending you positive thoughts for the Capecitabine to work for many many more years.

Love Louise x

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Louise, 

So very sorry to hear that your tumour markers have increased to 129, mine were 183 down from 593 after a restart of cycle 1, but....and this is a big but...I had to stop the Capecitabine for 17 days because like you my results of first attempt of Capecitabine were bad.

My platelets were too low only 52, I was very anaemic so had another blood test on 9th August. 

So I'm counting my restart of Capecitabine on 20th August as cycle 1, hope this makes sense. 

Anemea was 104, tumour markers 183, platelets up to 173. I'm on a dose of 1650mg twice a day. 

So cycle 2 was started on 10th September, cycle 3 on 1st October, cycle 4 on 22nd October. and now on cycle 5 ,started that on 12 November. 

So now I'm feeling really well, side effects are minimal, so please don't get too worried, hopefully like me you may need more time for your body to adapt. 

Pleased pour your heart out anytime 💕 I know it's so distressing and draining as you say, but we're all here only too pleased to help and give hope to everyone, because when you're at rock bottom you so desperately need someone to listen. 

I hope you get on now with the Capecitabine, and will feel better and positive as time goes on, always thinking of you,  and please let us know how it goes. 

Sending loads more best wishes and positive vibes.

Shirley xx

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat

I am so pleased to hear your good news regarding your tumour markers it gives me some hope. I am tolerating Capetabine ok just started second cycle yesterday, my only noticeable side effect so far is being tired but I put that down to that I am working full-time, so really no side effects which worries me. I also had a blood test before starting second cycle and unfortunately tumour markers have risen from 107 to 129 (this has risen nearly 20% in the space of 3 weeks), I was so upset to hear this and asked the nurse if this meant the chemo tablets weren't working, she said it is too early to worry but that they would keep an eye on this, well that doesn't really help me as I am convinced nothing is working. I've had no good news since diagnosis, its draining.

Sorry to pour me heart out to you but may I ask how your tumour markers were after 1st cycle?

Thank you for thinking of me and asking how I am 🙂

Best wishes

Louise x

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Louise, 

Just wondering how you're getting on with Capecitabine, hopefully it's working well, and you've not had any bad side effects. 

I'm starting cycle 5 tomorrow and have got some positive news from my bloods and scan which I had on Saturday. 

Tumour markers now 44, from 65, platelets 224 up now from 195, bone cancer is stable and I'm no longer anaemic. Also my liver tumour has shrunk from 15mm to 8mm now. So all in all it's fantastic news. 

Really hope you and the other lovely ladies can stay on this drug, and that you all report good news too, thinking of you all and sending my very best wishes.

Shirley xx

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Many thanks Tracy

Very glad to hear you are doing well with this treatment after 4 cycles and appreciate the feedback. Good luck and fingers crossed for your next scan.

Lou x

Tracy De Boorder
Member

Re: Capecitabine, desperately need feedback on this drug

Hi there,

I'm now on my 4th cycle of Capecitabine and really I've had no side effects.  My feet do hurt sometimes like burning, tingly feeling but I religiously cream them every day and so far I have no hand and foot syndrome.  I'm doing OK on it, it's taking a while to settle all my symptoms it seems like a build up effect with it. I have my next CT scan in a few weeks so that will show how well things are settling down.

Good luck with your treatment and I hope it stays the same with you regarding now symptoms, stay well and positive. Xxx

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Tracy

I was reading your message and was interested to hear how you are getting along with Capecitabine (I started last Thursday). You mentioned your feet tingling and I wondered if this became the hand and foot syndrome? I am sitting here waiting for the side effects to kick in but to be honest nothing really yet. Is it too early? 

Best wishes

Louise x

 

 

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Shirley

Thank you for such a positive story,  my platelets yesterday were 173 same as you September result. I am also so pleased that you had such a huge drop in tumour markers from 593 - 183! To be honest I just want to get started on this treatment and pray and wish for some luck with results. 

Thank you for your wishes and I will let you know how i go.

Louise xx

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Louise,

Sorry that your first treatment didn't work, it's so frustrating isn't it. I first started Capecitabine on 20th July, so when I had my bloods taken my platelets were 52, so really low.

However I restarted on 20th August and have now had three cycles, with platelets 173 in September whereas before they were 78 and tumour markers down to 183 from 593, so Capecitabine is working well.

On September 28th platelets were 199, and tumour markers 105, so everything is going the right way.

As for my results of this Tuesday I haven't got the numbers yet, but all is well with my blood results and start my 4th cycle tomorrow.

To answer your questions, no I didn't have a blood transfusion so your nurse is probably right, a side effect of Cape, as for other side effects I've not experienced any problems with my hands and feet and am feeling really well. I was off Cape for 17 days.

I wish you all the best with this new chemo, let us know how it goes for you.

Shirley 

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat

I have been reading this thread as due to start Capecitabine this evening once I have collected the chemo tablets. I am scared but like a few others on this thread in a way looking forward to getting started on this treatment as first treatment did not work (Fulvestrant and Palbo). You mentioned about your platelets being low and I have been informed by nurse this is a possible side effect, could I ask if they gave you a blood platelets transfusion and if you are now back on the Capecitabine, if so how long were you off of the tablet? 

Many thanks

Louise  

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Irene,

Firstly, I'm sorry to hear that Capecitabine has stopped working for you, I was really upset when Ribociclib stopped working for me after 18 months. But really pleased that you had over 2yrs with good results.

I've restarted this morning on Capecitabine and you've given me hope and encouragement, I'm prepared for the side effects and it's good to be back on chemo knowing that my body now has something to fight back with, I have been worried that the liver cancer was spreading, not so worried about the bone mets as Zometer lasts in your system.

Good luck with your biopsy results and your new chemo, and many thanks for your reply, so reassuring.

Shirley 

Tracy De Boorder
Member

Re: Capecitabine, desperately need feedback on this drug

Thank you so much for your reply. I started Capecitabine 2 days ago and I have to say I'm beginning to feel a bit better already so life is definitely better on medication. My feet have started tingling so I'm assuming the hand and foot syndrome is on its way but I'm armed with cream recommended by everyone. 

I really hope they find something new as quick as possible,  I was 5 weeks without medication a begun to feel quite unwell. New things are being found all the time so just keep those positive thoughts going. 

Sending you a hug. Xx

imac55
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat,

I've been on Capecitabine for over 2 yrs. It's kept me stable in that the tumours didn't grow, for over 2 yrs and cancer markers hardly changed.

Side selects were OK, much easier than fec for me anyway. I've kept my hair and learnt to live with the aches, as cancer treatment is all about how you tolerate it versus the potential benefits. 

I was told it wouldn't work forever and sadly, it has stopped working. I'm now waiting for biopsy results to determine next move.

If the choice is yours to take, I'd say give Capecitabine a go. On balance the side affects are worth it. 

Good luck for the future.

Irene

 

 

Tracy De Boorder
Member

Re: Capecitabine, desperately need feedback on this drug

Thank you, I've had balance problems for some time and tend to struggle with concentration for driving so avoid driving as much as possible. With fatigue I'm lucky I'm not working so can take each day as it comes. 

It's so nice to finally hear of other people's experiences it makes the side effects more manageable to know they are due to the drug and not the cancer. Xx

Mermaid007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Jaybro,

I too have the balance problem and the fatigue! I’m on cycle 3 and so far have no problems with hands and feet but some days my balance is so off! I have aching behind the eyes too. My nurse says that everybody metabolises the drug differently hence some have different symptoms. I’m on 3000 a day after 2 dose reductions. On the higher dose I couldn’t even trust myself to drive because of the balance/ visual disturbance. 

Well here’s hoping it works then at least the side effects are worth it.

xxx

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Jan,

So you're up to cycle 5, really good to hear that your blood markers have dropped. I have fatigue all the time and I'm still waiting to restart Capecitabine. I haven't heard of lack of balance, so hope that passes for you. 

I've now got to have my third blood test (this Tuesday 17th) platelets still too low! I'm definitely going on the hunt for blood 🤣 yes, vampire life here I come!

Hopefully you Jan, Tracy De Boorder, lovemama and all the other ladies in our position will have success with this drug, sending my best wishes and hugs 🤗

Shirley xx

WMJ
Member

Re: Capecitabine, desperately need feedback on this drug

Good news Jan, although not about the SEs. I have just finished cycle 3 and my biggest issue is fatigue, I don’t want to sleep all the time but I don’t have the energy to do the things I used to do. I also have a bit of dry skin on toes and my big toe is quite red and sore. All manageable and hopefully worth it.  All we can do is hope for the best with these treatments as they react differently on us all. Take one day at a time, that helps me so much. My liver has been misbehaving for the last 6 months, hoping my recent scan shows the Capecilabine has done what it should do & shrunk the bu99ers! 👹

Take care & stay safe xx 

Jaybro
Member

Re: Capecitabine, desperately need feedback on this drug

Hi

Just to update you on the dreaded capecitabine. Cycle5 has not been so bad apart from the fatigue and lack of balance so obviously I’m getting used to it BUT in the first 4 cycles, my blood markers have dropped from 128 to 86 to 27. I am absolutely delighted although I know things might change next month, next year…I’ll take those readings and carry on downing the tablets and hope.

I think I’m just unlucky with side effects. I hope you are able to restart the drug once your blood platelets improve. Maybe it’s you who should turn vampire??

Jan xx

 

 

Tracy De Boorder
Member

Re: Capecitabine, desperately need feedback on this drug

Thank you ladies just spent last half an hour reading this thread.  I'm due to start Capecitabine next week having been on palbociclib and anastrazole for the last 2 years. It stopped working about 5 weeks ago and I've been without anything for a while, secondaries in my mediastinum and lungs are very active and I've been feeling pretty pants really but you've all given me a fresh outlook that it could all settle down again with Capecitabine. I've got some cream in in case of the sore feet but if it's the right thing to say I'm looking forward to getting started and maybe life can get started again. 

Thank you all and sending good karma and big hugs

lovemama
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat, I understand your feeling.

My triple positive breast cancer is at stage 4 with suspicious cancer found in liver, lung and biopsy confirmed met in sternum. After 8 cycles of Taxol, Herceptin and Purjeta, in at least 6 of my 3 monthly CT scan, my onco. told me there is NOTHING in liver, lung and my sternum is healing (no activity on PET scan). I thought I might be the very lucky one who magically achieved NED.

Then all of a sudden I had a severe reaction in my 7th and 8th CT scan (hives all over body, low blod pressure 30/60, tongue sting)  It is ok. No more CT scan with contrast for me forever. But on the 8th CT scan result they found 3 masses at the very top surface (in the skin ??) near my sternum and one close to my heart though still nothing in liver, lung and all the organs. I will soon start my 2nd line anit-HER2 treatment.

Cancer is suck !!!

lovemama
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat,

I wish you can resume and continue on CAPE as long as you want.

Pls refer to page 2.

http://www.bccancer.bc.ca/chemotherapy-protocols-site/Documents/Breast/BRAVCAP_Protocol.pdf

Copied and pasted from below link

"Eat a balanced diet that includes foods high in iron. These foods include green leafy vegetables, liver and cooked red meats."

Leafy green vege. like spinach may not help but still good to have it as part of a balanced diet. 

https://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/managing-side-effects/anemia/?re...

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi lovemama,

Thank you for this information and the link to a website. Also for all help with diet.

Unfortunately I'd just finished my first cycle and when the results of blood samples came back the news was not what I'd expected.  My platelets are too low and I'm anaemic so I'm to have blood samples taken again this Thursday, and had to halt the Capecitabine. 

Just when I thought I was getting somewhere!

Timmycat 

 

 

lovemama
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat,

Below is the patient handout found from the same Canada website.

Edited : posted the wrong link for other cancer and corrected as below

http://www.bccancer.bc.ca/chemotherapy-protocols-site/Documents/Breast/BRAVCAP_Handout.pdf

ps. cancer is suck

ps. I always go to different websites including this forum and CancerResearchUK to compare notes

ps. I studied in London, UK when I was young   

lovemama
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat,

I don't have any experience of Cape but from what I found on my cancer center website loss of appetite (or anorexia) is one of the side effects of Cape and maybe, you would like to check with your medical team. 

Pls refer to pg 3 under organ site "gastrointestinal" for the side effect "anorexia"

http://www.bccancer.bc.ca/drug-database-site/Drug%20Index/Capecitabine_monograph.pdf

ps. Besides medicine which we may not want, I found some (GENERAL,NOT particular to breast cancer) dietary management suggestion on the website.

Encourage or Promote adequate hydration and daily oral intake by:
- Increase fluid intake as tolerated (e.g. soup, shakes, smoothies)
- Promote high calorie/protein fluids with medications and throughout the day (e.g. full-fat
milk, homemade smoothies, nutritional supplements).
- Limit fluid intake to 30 minutes prior to meals to avoid feeling full and 2 hours before
normal bedtime so as not to interrupt sleep. Small, frequent meals (5-6) per day.
- High calorie, high protein foods (e.g. cheese/cottage cheese, eggs, Greek yogurt, nut
butters, protein bars, avocados)
- Eating largest meal when feeling most hungry regardless of time of day
- Sitting upright for 30 to 60 minutes after eating to facilitate digestion
- Avoid preparing foods with strong odours or ask caregivers to prepare such foods and
avoid being present during the preparation
- If fatigue or meal preparation are a problem, suggest the use of convenience foods (e.g.
frozen foods, canned soups), take-out foods, catering service, family or friends preparing
meals, or Meals on Wheels®
- Oral nutritional supplements as needed to augment diet; particularly if patient has
symptoms that interfere with nutritional intake or absorption (eg. Ensure, boost)
- Manage contributors to anorexia eg. Chronic nausea, constipation, taste alterations
- Avoid spicy foods and limit drinks with coffee and alcohol
- Make mealtimes as relaxing and enjoyable as possible. Ask for help when preparing
meals. Try keeping a daily log of nutritional intake

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Gina, 

Yes I take an omprazole every morning. Thanks for your tips on food and drink for tummy troubles, there're very welcome because I still get terrible bloating in the early evening, and by about 7am it looks like I'm expecting baby no. three!! 🤣 I'm 66!

I don't think I'm on full dose (1650mg twice a day) I don't know what my percentage is.

You have been very helpful, thank you for taking the time to help me out 💕.

Timmycat 

Gina G
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmy cat.

Glad to know you are on the mend.

The omprazole does help.

I too fast at night from 1930-0830 in the morning. 

For the tummy troubles eat a banana at least a day and soda water with lemon is good to sip.

Alcohol can definitely cause diarrhoea, (for me beer and cider). But the occasional small red wine or rose wine soda is ok

Avoid food that is too high in fibre as this will cause much gut action.

Finally ask Dr for dose reduction, if you are on the full dose, as I am on 80%.

I hope this has been helpful.

Gina 

 

 

 

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Gina and everyone, 

It's now day 4 of no Capecitabine and for the last 3 days I've been feeling so much better 😀. Appetite is more or less back and I'm actually starting to enjoy food again. I've been given supplements to help, and I really appreciate that, but hell,  the taste has much to be desired!

So almost through my first cycle and I'm sure the Cape is kicking in.

Many thanks again to everyone for your helpful and lovely comments 💕 xxx

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Thank you for your positive advice, I realise it's early days for me, hopefully my next post will be very different, I really appreciate everyone's help 💕

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Thank you everyone for your information and advice. 

I started on Capecitabine last night at 7pm, the dose is 1600mg twice a day.

I had a terrible night,  so took diarrhoea tablets and one for nausea this morning so I could eat and then take the Capecitabine with breakfast. I'm finding it so hard to eat as I've no appetite. 

I saw a doctor yesterday because I was having terrible pupatations, my heartbeat was like a steam train! He said that all the horrible symptoms were due to the liver cancer, everything,  the stomach aches,  bloating, generally feeling rubbish.

Does anyone else have no appetite? 

I probably already do the fasting Gillyflower, that is interesting, just hope I'll finally feel better soon.

I was 21 days without chemo so have been wondering if the liver cancer has run riot!

I take one iron pill a day, Adcal-D3, morphine and paracetamol for bone pain, oh and Omeprazole for stomach, probably no wonder my body is struggling. 

Thanks once again all you lovely ladies, your help and feedback is much appreciated 🥰🥰 xxx

 

Curly Top 64
Member

Re: Capecitabine, desperately need feedback on this drug

Hi I have been on Cape and Herceptin for about a year and a half now, I am on 4000mg per day, two weeks on one week off.  I have found Cape very doable, side effects have been minimal, as has already been said hands and feet have been my main issues but if you keep on top of it with creams they are not too bad. Cancer is in my bones, spine hips and breast bone. Cape has reduced some lesions and kept the rest stable, I am able to do most things, I do get fatigued sometimes but its manageable.  I hope to be able to stay on Cape a long time if possible, good luck on your journey and i hope it works well for you.

Gillyflower
Community Champion

Re: Capecitabine, desperately need feedback on this drug

You're welcome but sorry to hear you've been feeling so rough on your week off!  I go through phases of getting really bad bloating / digestion / tummy problems but am lucky in that they don't seem consistently bad.  Sending love xxx

Its funny isn't it how the drugs can affect us all so differently!  I know some people who get terrible Palmar-Plantar on hands and feet, I was like "I'm definitely going to get that because of my eczema already playing havoc with my skin..." - but no!  I don't get the PP syndrome, just aggravated eczema and my skin "goes freckly" in the sun very quickly now, to the point where I have freckle-type discolouration on my feet!

Something that might be worth thinking about for fatigue (Jan this might help you too) - keep an eye on your iron levels and speak to your Oncologist to see if taking an iron supplement once or twice a week might help.  By definition, I am not anaemic, but when I have my really "tired" days on my week off, I take a multivitamin twice during that week and I swear blind it makes a hell of a difference.  My blood results always come back with me just on the cusp of having low iron but not enough to make it officially "anaemic".

Oncologist recommended not to take vitamins every day though as they can off-set the work that the Capecitabine is doing but she said once or twice a week is ok.

The other thing I do to improve my energy levels is overnight fasting (ie. no eating after 7pm and no breakfast before 8am at the earliest).  I've noticed I definitely get a better nights' sleep and feel more energetic when I'm doing this consistently and there is clinical research to show it does actually have a massively positive effect on your immune system.

Anyway, hope everything goes alright and you start to feel a bit better really soon! xxx

 

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Jan,

It's interesting that your side effects are very different to others. Yes I will keep my diary of symptoms and I'll post again on here how I get on.

Had a giggle about you feeling like a vampire!

Many thanks for your reply. 

Shirley x

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Gillyflower, 

Thank you for your information and experience with this drug.

I'm getting a lot of positive feedback about Capecitabine, that's really good.  So you've been on it for just over a year and side effects are manageable. Great that they're are pretty minimal, but sorry that you have to manage eczema as well.

Not sure when I'm due to start, as I've a few problems to sort out first. Tomorrow I'll be at the hospital for bloods (something to do with liver enzymes). On the 28th July I'm to have an ultrasound to see if the liver tumour can be lazered, and presumably to see if there are any more of the them.

Its been 12 days of no chemo treatment now, and I feel absolutely awful in the mornings and then again around 4pm ish (terrible stomach aches, starting roughly at 4am, and really bad bloating, and generally just rubbish) does anyone else have this? Keep thinking that it's spread to other organs, I don't know of course, but it drags you down doesn't it. I thought that in the time off you were supposed to feel better! Although another lady said it stays in your system, so that would explain why I still have hot flushes and sweating even though the Letrozole has been stopped.

I remember you loved your walking and exercise, and was very inspired!

The hands and feet do seem to be the common side effect, the lovely ladies on this feed have told me about that.

Thank you once again for your feedback, and I wish you all the best xxx