Capecitabine

Living with secondary breast cancer Triple negative secondary breast cancer
1

Hi Everyone

I thought it might be easier to follow if I started a new thread.

Yes, cape has served me well and I’m hoping is continuing to do so. For me, it hasn’t removed or much reduced the cancer but it’s kept it all contained and, for TN, that is a good target. I have times when we think it may be time to move on, then my body rallies round and gets cape working again - so don’t give up hope if you have some progression. It may be transitory.

Side effects (remember we’re all different and I’m 71!):

  1. No hair loss, maybe a bit of thinning at the temples (but that could be my dad’s genes) easily resolved with a fringe

  2. No sickness and minimal nausea. I’d strongly advise using the anti-emetic you’ll probably be prescribed as instructed for the first cycle and then just use it if you need it

  3. Taking the tablets at home makes you feel more in control. The 500mg are an odd shape so I have to take my dose in 150mg tablets - all 9 of them, twice a day!

  4. I was wiped out by the first 3 cycles. Fatigue beyond fatigue. Then I could feel my body adjusting. Meantime, it was definitely working - markers plummeted, tumour shrinking, skin mets softening, so it was worth it.

  5. PPE or hand/foot syndrome. If you get it, I get the impression it happens quite quickly so you moisturise your feet (and therefore your hands) twice daily with 10% urea cream. Without fail! Hospitals prescribe Hydromol or Eucerin. A lot of women choose Udderly (Amazon). I settled for CCS Swedish Foot Care Cream (recommended by my reflexologist). After almost 2 years, the worst I have is pink palms and a loss of mass in my heels. Early on, I did experience tenderness and weird pains around my toe nails and in my heels but that resolved itself.

  6. Peripheral Neuropathy: cape has made mine a bit worse but not disastrous. I’ve lost my fingerprints and they are tingly numb on the surface. Beneath, I’m not sure. Textures are magnified so opening a box of Maltesers feels like knives slicing my fingertips. There are ways round it.

  7. Cape tummy. This can be a major problem. Cape causes inflammation in the GI tract. Experience has taught me to be careful how I take my pills. First I line my stomach with toast. 20 mins later, I take each tablet with food or yoghurt and water. I sit up straight so they head downwards fast. No hot drinks cos that causes tables to dissolve too soon. 

Buscopan IBS is very good for diarrhoea cramps and is less likely to cause constipation than loperamide. Some people take a gentle laxative. Monitor things carefully. You may detect a pattern during the 3 week cycle. If you do, you’re on a roll. I have just learnt how important good bowel management is: too much straining (because I hate laxatives) has caused a non-cancer gynae/urology issue. Not nice.

If you get acid reflux or a sore tummy, you will be prescribed a PPI like lansoprazole or omeprazole. It’s worth it. Act early.

  1. Fatigue: I get this a lot but then I’m a delicate little flower, ageing and maybe more vulnerable to it. I just enjoy duvet days and read a lot.

I’ve identified the main SEs but I don’t experience them all. Report on each side effect (especially palms and soles) at each consultation - nothing is irrelevant and a dosage adjustment can make all the difference. They start you on the highest dose they can for your weight/height and then reduce it.

Lastly, the week off. Don’t be duped. It’s not a week off SEs - the build up of cape is at its peak and sometimes I’ve felt worse in this week and fine in week 1. 

Conclusion: the SEs are nowhere near as scary as I found IV SEs. I read of someone who’s been on it 8 years!! I also know of someone who was rather ill and didn’t last the first cycle. So hope for the best - an extreme reaction is the exception.

5 Likes
2

Hi @Jaybro  /Jan

My Darlin girl (you and I are of quite a loong tie now, Hey?). I feel quite “helpless” to give/offer you support in what you, and others similar are going through. All I feel I CAN do, is to hopefully give you, and all else, some “cheer”, with DAFT photos. Lotsa lurrrv, Dellypoos  XX Is this character peed off, or what??? 

3

Hi Jan,

That is so useful I just started on Cape this morning having given Trodelvy a good try (10 cycles) before the side effects became too much. I’m hoping Cape will be kinder to me but I do seem to be very vulnerable to side effects. Every chemo so far has had to have the dose reduced. I’m hoping that being more in control by having oral medication that I will be able to get away on holiday at last. You’ve given me more information than any doctor or nurse, so thanks.

Helen :bouquet: x

2 Likes
4

Hi, I know this is an old post…but i was wondering if you still on Capecitabine.
I’m on it since September.
I take 3000 mg a day (1500 morning, 1500 evening).
I started with 3500 but it was way too much.
Thank you

5

hello
I’m just finishing my first year on capecitabine and am coming to terms with being shattered from the middle of week 2 of the cycle to the middle of week 3- that said, I m fine until mid week 2.
It all takes a lot of getting used to, doesn’t it!
i did really well at first, had several lung mets on both sides which seemed to melt away initially, then last review showed the one remaining had doubled in size- although still within the parameters of stable.
I find I’m OK until the few days before consultant reviews, then get horribly anxious. My son and daughter always come to reviews with me, but we haven’t told my grandchildren, as I’m functioning well enough in 2 out of 3 weeks’.
I want to stay on capecitabine as long as possible, as my first 2 cancer were 8/8 hormone related and this is just 3/8, so hormone treatment isn’t going to be helpful.
In all of this, I feel lucky and sort of accepting of what’s happening now.
I was first diagnosed in 1997 aged 38 with 2 children in primary school; then in 2009, ages 50, and my children were grown up. This time I was 64, and very upset initially, but am focusing on family and friends, and on travelling. when I can.
I’ve relied on Dr Susan Love’s Breast Cancer Book for all these years - its cracking! The health system described is American but every other element I find really useful.
hope you’re all getting through this journey OK X

1 Like