Xeloda / Capecitabine - Your Top Tips, please?

[BJR324]

Hi Carolyn and George

just back from oncologist appointment, reduction of cape by 20% not sure what that brings it down too, maths was never my strong point! 

Apparentley tumour markers are down from 2900 to 2600. Not sure what this means but he said it shows it’s working. Does anyone else have tumour markers recorded my last oncologist never used them, so I’m in the dark a bit.

Feeling more positive today, scan on 28th Jan, results 7th February. Hoping it’s good news then and will then continue on 3 more cycles.

well it’s my 38th wedding anniversary today so going to have relaxing day with hubby. Film watching and chilling I think. 

Hope all well with everyone else.

Bel xx

[george]

Hi BJR,
good luck tomorrow when you see your oncologist. I too feel worse during week off, usually towards the middle of the week then i pick up again. Suspect it is because all the chemo has built up. I am sure onc will adjust your dose if necesssary. I saw my onc yesterday for cycle 22 ( might be cycle 23, have lost count). Anyway, TMs continue to rise slowly - by 15 in two months- but, as last scan showed stability, he is continuing with Cape, for now anyway. I start again on peachy pills tomorrow.
Carolyn, my onc agrees with your onc that Cape is effective on lower doses. I had an extra week off before Christmas which i would have enjoyed more if i didnt have a cold. Typical me.🤧
Enjoy your lunch tomorrow😊

George 🤗

[Carolyn52]

Hiya bel

I went clinic today to get my peachy pills but platelettes lower again so down to 1000 x 2 a day when I restart them.on Sunday. They assure me still working as the reduction only reduces the toxicity not the power of the chemo? ???
Yes I feel shattered all the time. .most days stay in bed to mid day if I can as I'm retired!
Had early clinic appointment today so off to my bed now zzzzzz. Not felt too bad on my week off this time ....so maybe it gets easier as time goes on. It's getting a quality of life on the peachy pills that matters. ...so speak to oncologist and try to get dosage etc right.
Off for lunch tomorrow with friend and a bit of shopping but believe me If I'm honest I could easily give up and stay in bed !!
Xx

[BJR324]

Hi All 

Big day tomorrow see oncologist to discuss level of cape and side effects! I’ve spent the day snuggled up in bed  with a hot water bottle as felt really unwell and it’s my week off! 

Tomorrow is also our wedding Anniversary 38 years can’t believe it, not sure there’ll. be much celebrating going on. Never mind hope I’ll feel better. 

No scan results as that’s not till after 3rd round. 

Keep up the good work cape crusaders, it really helps me to hear about others experiences! And I don’t feel so isolated.

Bel xx

[Carolyn52]

Ramade

My side effects are exactly the same as we are really a mirror image of each other ...
I'm on my week off now ..don't feel sicky and eating like a gremlin today and yesterday. ..mmmm let's raise

Raid the fridge again ! Oink oink 🐖🐽hope everyone else is coping ..it's a wonderful regime if the body can tolerate it ladies ...
🍰🍟🍫

[ramade]

Hi Bob,Bel,Carolyn and all on Cape. The only side effect i have had so far are finger tips peeling and cracking and very sore, hospital have prescribed me some cream. i know that Cape is working for me because i have obvious lumps in my neck which are going down, also had blurry left eye, and losing teeth on left hand side, the fog is clearing, still numb face though but that is from brain. it is a drug which seems to work on a lot of people though so worth pushing through. xx

[BJR324]

Hi Bon and everyone else

i was very poorly before going on the peachy pills(as Carolyn calls them) but once into them felt better. I’m just about to finish second round, whilst I feel better than I did before taking Cape, the side effects can take a bit of getting used too and managing.

worst for me is fatigue, and dodgy tummy!!! I think it’s a case of getting dose right from what I’ve read on here. However I started on 2150 twice a day, but have lost a lot of weight so hoping that the dose will be reduced and I will find more manageable this week after seeing onc. 

im not sure what others think but I far preferred having one dose of chemo every 3 weeks intravenously than all this pill taking! 

Im on to 17-18 pills a day  now and can’t get my head round it all. Luckily my OH is brilliant and managing me.

Hoping for a nice day today as we are expecting 2 new goats next week, pandora and Tiffany, so need to complete there house today.

Hope everyone has a happy Sunday. 

Bel. Xx

[Carolyn52]

Oh Bon
Best of luck with joining us as a cape crusader. .I'm sure you will be fine with it ..although it's a big dosage ..I've just stopped mine now for a week. .yippee no 7am pills and muffin ..so.lay on for me. Although I feel better on the pills.
💟💟💟💟💟

[bonariensis]

Hi all

Started cape today. Wasn't feeling well anyway. We shal see.

Bon xxx

[Carolyn52]

I have stopped any visitors with colds calling in to try to avoid a virus ....so many people with bugs at moment ...
I'm feeling a bit sicky so having plain food rather than anti sickness pills .....
BEL ..all those rescue animals must cost a fortune to feed and look after. ...but your heart is in the right place for care. It must be nice though to have them all.
Well one more load of peachy pills tonight and then a week off ..this month I had all 150gm pills not the 500 ones. .so many to take in one go!

[george]

Hi all and happy New Year.😊
I have been a little quiet lately for 2 reasons: I was feeling wiped out after catching this cold that has been going around which also meant that I had to have an extra week off Cape and i wanted a cancer 'holiday'. Back to normal now, well my normal- sore hands and feet and occasional dodgy tummy. Got reality check next week as back at hospital to receive 2 months of TM results. Yikes. They have been going up slowly but steadily since last May so expecting the worst. Onc said last scan in November showed stability, but that the cancer is active hence rise in TMs. Anyway, I had a nice Christmas and went away for a few days😊
Carolyn, I am no medical expert, but my understanding is that platelets help the blood to clot and neutrophils fight infections so are essential to our immune system which is why they have to be above 1.5 in my hospital. Mine did drop when I first started taking Cape and were always around the 1.5 mark; however, recently, they have started to rise. I have no idea why.
Have a good weekend all capers

George 🤗

[BJR324]

Hi Ramade and everyone else.

We have rescue animals too. We rescued 5 Alpacas, and 2 rather large pot bellied pigs, called Arthur and Bramble. We also have 15 rescued chickens! Alongside these rescued animals we have 15 runner ducks, 3 geese, and two goats called Pandora and Tiffany. We also have a small flock of 22 sheep. 2 rams called Barry and Kevin who we hand reared and now think they are dogs! 

Animals are therapeutic but hard work, my OH works very hard looking after them, as I’m all but useless now as I get worn out so quickly. I do partipate in the growing of the veg, as we’ve set up a reclining sun lounger in the poly tunnel so I can take a break any time in there.

The last few days have been a bit up and down, tummy not coping very well and I’ve had to resort to Imodium, hoping that next week my dose will be reduced and things will settle down a bit. I’ve also lost 10kg, so I’m sure this will mean my dose can be lowered.

Interestingly I get the runny nose side effect in the 2nd week of cape! Hoping that everyone is well and side effects in 2019 are more manageable.

Definitley feeling more positive today!

Bel xx

[LYNDYLOO]

Hi Carolyn/Lynne

When I was cape my neutrifils went down to 1.4. The hospital I attend like them to be 1.5. Think the neutrifils must white blood cells that ward off infection. I had the same problem when I was on FEC. I had to have an injection about 2 days after having FEC. I am not sure what low platelets means.

Hope that helps.

Linda

[Lynnq]

Hi Carolyn. I googled the question and apparantley platelets and neutrophils ‘are partners in bacterial destruction.’

So not exactly the same but they work together..

I get them from a mobile unit one cycle and then from the hospital the next cycle. I have Zometa infusion every six weeks which is at the hospital so they fit that in with my new cycle. They do blood pressure and weight when I am at the hospital, but not when I go the the unit.
I also feel worse on my week off - Nausea, diarrhoea and shaky. Also lower energy levels, still go for my walk around the village but hubby always comes with me now.
As you say things are building up, I don’t know how long before they give us an extra week off, I expect that also depends on SEs

Won’t complain though since I know that others have worse SEs

Xx

[Carolyn52]

Hiya Lynn
My platelettes ( are they the same as netrophills)
Were low last month and I only got the pills by having a lowered dose ! We are at the same stage with cape ..these things are building up. I stop pills tomortow for my week off so hoping this week they climb back up again. Feel horrible on week off though. ..
I get blood done Tuesday ready for Wednesday clinic. I always have to ask for blood pressure, heart test and weighting though. .they don't seem that fussed about these things.

[Lynnq]

Hi everyone.  Glad to hear Bel that your bloods were okay and that your TMs are better

I start my 6th cycle tomorrow,

had bloods done yesterday and then a phone call from the hospital this morning to say that my neutrophils were too low for me to be given my next cycle.

the hospital is about an hours drive away but we have a mobile chemo unit which comes to our local hospital and every other cycle they let me get my chemo from there

The options were to leave it for a week or to go to the district hospital where they would do another blood test to see if they had gone up...they told me that they were just marginally low...so I decided to go through and have the blood test.  It was a two hour round trip but they did the test straight away and the new results were through in about an hour.  Thankfully they had gone up to acceptable levels so they gave me my next lot.

They also told me that TMs had decreased again from 122 to 111 so pleased with that 

This is the second time this has happened with my neutrophils and I asked if there was anything I could do to make a difference but they said -‘No it  is just one of those things’

I have started taking multivitamins and vit c yesterday, and I am on Adcal already so hoping the extra vits will help 

hope you’re all back to ‘normal’ now after the Christmas break

Hugs to all

xx

[Carolyn52]

Oh what a lovely thing to do ..rescue animals. .they give so much love and appreciation back.
My son adopted a donkey for me this year. .she's out the donkey sanctuary at Sidmouth a few miles away. I hope to visit her soon. 🐆🐴🐮

[ramade]

Hi Bel, we have a smallholding aswell and we have rescue animals, i find them really therapeutic, i expect you do too.

al the best

Ramade

[BJR324]

Thank you for your lovely supportive replies. I had my bloods done yesterday and they were ok, my tumour markers were better than they had been, my liver function was slightly worse than before. 

Anyhow I feel a lot better, I’ve decided to go dairy free again as I wonder whether that’s making me feel so poorly. I started eating dairy after a 5 year break when I started cape because my calcium levels were so low and I can’t tolerate any calcium pills.

so today I’m hoping for a good day, no anti sickness and less morphine and I hope to be able to go for a walk around our small holding to chat with the animals! 

Again thanks for your support, I’m really appreciate it, particularly as I don’t know anyone else on the same treatment as me.

Have a good day everyone. 

Bel xx

[Carolyn52]

I take Vitamin c and d daily ..don't know if they are magic though! I stopped denosumab 7 months ago as my teeth and jaw were so sore. ..at Exeter they only recommend 3 years of it. I did 2.5 years so.nearly did my time.
I eat loads of dairy ..my old oncologist(the old school) said it was just as good as denosumab .
Yoghurt. Milk shakes and tinned rice pudding cheese.
That sort of stuff .
But I'm not a medical expert so don't quote me on this !!! I don't really like meat much
.odd piece of bacon is about it.