Member
Posts: 528
Registered: ‎15-04-2017

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

Hi Melinda.

I was convinced my last scan would show something going on with the tissue around my ribs as I had numerous lumps that weren’t there before. I’ve no idea what they were but they didn’t show up on my ct and they’ve disappeared now.
Also, stress can play havoc with your lymph nodes and so can meds. When I had my primary diagnosis last year there were a cpl of lumps on my neck which also disappeared.
Community Champion
Posts: 8,341
Registered: ‎26-10-2015

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

Melinda
Sending vibes to you tomorrow too ..agh hunt the vein for the contrast is a pain in the bum too !! Hope the radiographer is good with it.
Linda
Glad tamoxifen is being kind to you after the taxol u had to endure ...
Member
Posts: 13
Registered: ‎01-11-2018

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

Caroline my scan is at 6 as well.  I will be sending you positive vibes.  I really think a scan results ban should be enforced in December!,  I always get December flaky brain without this added stress.  Good luck tomorrow x

Member
Posts: 498
Registered: ‎01-05-2012

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

Evening George

So pleased cape is still working well for you. When I was on cape from October last year till July I gained about 10lb in weight. Mind I was always starving not easy to diet on the peachy pills as you have to eat reasonably when taking them. As you know I am now on tamoxifen which seems to be going OK. Weight has now started to come back down thankfully.

Carolyn good luck with your scan tomorrow.

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

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

Hello Melinda

Snap we are on the same stage. .I've just started cycle 6 too and just looked my scan is tomorrow night at 6pm too. ..aagh results in just to spoil Xmas for us !
I have been oiling my feet and hands but no problems as yet. ..I use Johnsons baby lotion ..cheapskate!
I cant answer about your lumps ..maybe a blast of rads would help ? But I would think cape would do something soon.
So fingers crossed we can both cope well with the peachy pills ..I'm only taking 2 big ones and 2 little pills now twice daily.
Member
Posts: 13
Registered: ‎01-11-2018

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

Hi Cape Ladies,

 

So glad to hear that on a whole you are all managing well on cape and getting good results and good luck Carolyn for your scan on the 8th.

 

I am now on my 6th round of cape which I have found very easy to tolerate and none of the side effects that I was expecting.  I have a scan tomorrow, which is the first one since starting on this chemo.

 

My worry that is keeping me awake at the minute is that I have just found a few lumps in my neck,  I am sure that they haven't always been there and have just recently developed.  Do you think this will be an indication that the Cape is not working on other mets ?  The constant worrying is really getting me down.  If the cancer has spread to neck lymp glands/nodes can they be treated from anyones experience ? 

 

Big hugs to everyone waiting for results and feeling poorly xx

Member
Posts: 328
Registered: ‎28-01-2016

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

Hi Carolyn

I don't want to worry you but when I first started Cape, I was 60kg. I am now 66kg🙄I did ask my onc if the Cape was to blame- he said no so it must be the fact that I am eating more, especially things I fancy. ( just finished a donut). I do try to do mild exercise every day to no avail regarding the weight loss.However, I am not too worried about it as, when I had an inflamed gall bladder, I lost a lot of weight very quickly which was scary. My philosophy now is everything in moderation. Finish cycle 21 tomorrow so I will be having a few cheeky glasses of wine.
Go and enjoy a pizza😂

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

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

Hiya George
Our wise owl with cape pills. I've just started cycle 6 yesterday. .feeling starving now back on them though ! I was doing a jigsaw app on the kindle earlier in the night ...it was a picture of a pizza ..I almost felt I could eat it . .Glass and all. Ha ha.
I'm now on a small dose 1300 x 2 a day. ..
But joking aside I must watch what I eat or I'm going to be a heiffer ....
🐽🐽🐽
Member
Posts: 328
Registered: ‎28-01-2016

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

Hi BJR324 and welcome. Good to hear you have turned a corner and are feeling more positive. I am on cycle 21 of Cape and, like you, I started on the full dose of 2,150x2 which was reduced after about 4 months as I was suffering from the big D during my week off. Once you get into a routine, Cape is very manageable. I am currently on 1,800x2 and the main side effect for me is sore hands and feet despite lots of moisturising; however, this doesn't stop me from getting on with life and planning lots of 'feel good' things. Cape has certainly worked well for me and has got rid of 4 small liver mets and reduced the remaining one to a dot so fingers crossed it continues to work🙏
Good luck with Cape and your scan result after 3 cycles. At least this means you can enjoy Christmas- onc giving me an extra week off Cape during the festive period- hurrah😊
Do post any questions you have as there are lots if wise women on this thread who will be able to answer any questions you might have.
Enjoy your Christmas wrapping

George 🤗
Member
Posts: 26
Registered: ‎24-07-2016

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

Hi All

 

After my initial melt down that having spent the whole Summer on Docetaxel for a splattering of liver mets (onc’s words!) only to find by 1st October liver Mets had spread extensively through my liver, I am at last calming down! ( well a bit anyway). I also requested a Chang ego oncologist as I’d been with same one since primary in 2005.

for the last couple of months I’ve felt so lethargic and unwell, on so many pills and potions I haven’t managed to do much but today I’ve turned the corner.

LOTS OF POSITIVE thoughts from my lovely family and friends as I join n the CAPE CRUSADE! so this morning ive popped my first “peachy pills” as Carolyn calls them.

im hoping for not too many side effects but I seem to be having quite a biggish dose. 2150g x 2 a day? I weigh about 10 stone. So not sure if that’s why! 

Im also waiting for the results of liver biopsy from last Thursday. Very surprisingly I found this quite painless! A night in hospital to recover but no discomfort from site.

Please any advice help on cape would be appreciated, Ive been booked for 3 cycles then scan, so hopeing  that it works well for me. 

Good luck to all other cape crusaders. I’m going to be busy today wrapping all those internet xmas presents that it’s all to easy to buy when your sat at home! 

Fairies and elves seem to have decorated my house already!! 

Xx

 

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

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

Hello Ramade
Ugh that E and E regime ..5 months i put up with it .. sure it fed the cancer!
Anyway cape is fine ..don't be scared to try it ..I'm just back today on it after my weeks break. I'm on a low dose so tolerating it well. .apart from eating too much ..but its the time of year for nice food.
Off to local pub today for lunch. New menu ..veggy toad in hole ! Gotta try it!

🐖🐖🐖🐖
Member
Posts: 222
Registered: ‎30-03-2017

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

hi Carolyn, i agree with you about the grandchilden they really take your mind off...

i had no joy with e/e either and with everything else failing they are suggesting cape so i was glad to find this thread thanks to our late friend Moijan.

i hope you are feeling better now i missed you when you were off line.

hugs Ramade x

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

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

It's nice to have a bit of banter as we all have daily problems to deal with but I try to have something planned however small each day ..otherwise to be honest I could sleep all day
Today been to a 70th cream tea birthday party in a remote little tea room. ..all knitted tea cosys and bone china cups etc. Just nice for us oldies !
Grandchildren are such a gift to have around. .they do give a focus which keeps us fighting all this.
💜
Member
Posts: 11
Registered: ‎09-07-2017

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

Hi George and Caroline,

Thanks for your kind comments and support it's nice on here because you all get it and it makes me feel less isolated.

Good to hear you all planning some fun in your lives ladies without that we would feel even more sad. I am hoping to be well enough to go to my grandaughters school concerts I just love those events. They are 3 1/2 and 5 years old, both attending school in the Welsh Medium so are bilingual and correct my poor Welsh. Boo Hoo!. Best of all they sing in both English and Welsh it is so lovely to hear the kids all singing away in the choirs.

In the meantime I hope you are all getting as much fun as you can.

Be well and keep smiling.

Hugs to all

Happygirl

Member
Posts: 328
Registered: ‎28-01-2016

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

Carolyn, try not to be too disappointed regarding your dose reduction. The same thing happened to me when I started Cape; it really attacked my neuts so I had to have a dose reduction. Neuts have since recovered and I am back up to 1800x2 a day. This is also due also to the fact I have put on weight-too much chocolate.🙄My onc did say Cape either works or it doesn't and he has patients who are on low doses.
Happygirl, sorry to hear you have been unwell. Hope you are feeling better. You have such a positive attitude and it is good news your onc has lots of other meds to try. That is the thing with Sbc, it is all trial and error until we find a treatment that suits us. Let us know how you get on and enjoy your retail therapy😊
Hope all you lovely Cape ladies are doing well. I am off to the ballet this afternoon to see the Nutcracker

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

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

Hello happy girl
I'm sorry u are having trouble with cape ..I stopped denosumab 6 months ago after 3 years because it was really playing my teeth up ..but here in our area they only recommend 3 years of it anyway.
Hopefully there will be more treatments if cape isn't suitable ..I didn't do well on exmestance and everlimous but they might offer it to you and everyone is individual and copes differently.
Member
Posts: 11
Registered: ‎09-07-2017

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

Hi ladies,

Just catching up on your posts as I have been cape-unwell-bed.  I'm sure you will be okay on a reduced dose Carolyn52.  My oncologist told me this week it was not dose dependant for good results so I hope you can remain on it for a' long spell' and get the benifits.

I went for my 3rd cycle on Monday but when my oncologist saw me she decided to suspended me for 2 weeks of cape and delay my Denusomab too.  I will be reviewed then and we will decide how I will move forward. Which is good because I have options and my onc has more stuff in her arsenal if cape is not for me. Yippee! 

On the positive side the drugs had already started to reduce the mets in only 2 cycles, so for you girls who are uncertain it works - it works great. So keep taking the peachy pills. 

My next plan is to join the Christmas Shopping with the others in this group as soon as I can, just in case the shops run out of goodies. 

Happy shopping to you all and by the way remember you need to treat yourselves too, I always feel better after Retail Therapy.

Hugs to all   

Happy Girl

 

 

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

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

Oh Lynn. .poor you having a cold ..I'm trying to avoid crowds and people hugging me ..just to be sure.
I was on 1600 x 2 but now on 1300 x2 a day. Hope it still works some sort of magic still.
Member
Posts: 609
Registered: ‎10-10-2012

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

Hi Carolyn

 

sorry to hear that your bloods are low.  I do know of a lady whose doseage was lowered twice because of early problems when she started Cape.  She was fine for several months and then they raised her dose because she put on weight, so you could still have a long spell on the pills.  

Was your dosage lowered by much ?

 

I am full of cold at the moment....getting better though.....so taking the rest and spoiling myself a bit

 

xxx

 

Xx

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

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

Oh dearie me ...my bloods and platelettes were low today although I feel ok so I'm now having a reduction in dosage to 1300 x 2 a day.
Disappointed as I'm only on cycle 6 ...hoped for a long spell with the peachy pills ...