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Xeloda / Capecitabine - Your Top Tips, please?

Community Champion

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

Hiya Melinda
Gosh didn't realise u had brain mets too ..how long ago? And did u have treatment ? Apparently mine are quite rare. .only affect 5% ..trust me to get them.
Member

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

Carolyn,  you have such a lovely sense of humour with all you have to cope with Smiley Happy.  I did have brain rads and I must admit to "going along with it" and not putting much thought into the implications.  Looking back I should probably been more questioning.  Still its done now,  I just wanted them to make it go away !!  I hope you are having a nice day and managing lots of on line shopping treats for yourself and family .

 

Hugs and positive thoughts as we wait our results xx

Community Champion

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

Hello Melinda
No I don't mind sharing the brain mets thing. The ct scan missed them in March when I started getting a numb face ..in July I had a mri brain scan and that's where they were found. I declined whole brain rads as with oncologist it was decided that it wasn't good odds. ..oncologist is hoping that cape will hold things. I got a paralysed left side of face ..no pain just hard to talk. I get a bit dizzy and balance problems but I can still keep up with conversation and online shopping !
Hope this helps
🐸🐸🐸🐸
Member

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

Hi Carolyn,  it sounds like we were scan twins last night !  I still panick after a scan even after 3 years of it.  I will now be a hopeless case until results day .  I really need to keep it together so I don’t ruin Christmas for my  family, I just worry about getting stocking presents muddled up and wrong labels on parcels. I suppose it’s keeping my mind busy .  I hope you don’t mind me asking but do you get many side effects from your brain mets ?  X

Community Champion

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

Hello Melinda
Hope your scan went OK last night ...mine wasent too bad as I had 2 x brain and 1 x body. ..about 20 minutes once the cannula was in !
Apparently they took 1000 images. .so that's why it takes so.long for results. .aagh .
Community Champion

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

Well ct scan all done. 3 attempts at vein though for contrast. Results 3/4 weeks . Think I've got so used to results now ...I'm not going to fret too much!
☺☺
Member

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

Sorry, meant to write Lyndy (duh)
Member

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

Good luck with your scans today, Melinda and Carolyn.
Glad that Tamoxifen is working for you, Lynne; it is much easier that chemo. I would like a little break from Cape, but don't want to tempt fate by stolpong it.
Hope Cape continues to treat you all well. Have a good week everyone

George 🤗
Member

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

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

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

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

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

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

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

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

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

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

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

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