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Xeloda / Capecitabine - Your Top Tips, please?

4,146 REPLIES
Member

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

Morning Carolyn

 

Sorry to read you are in hospital. Hope you get home soon. 

 

Must have been really scary for you. 

 

Sending a cyber hug. 

 

Linda 

Member

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

carolyn,love to you and thinking of you. i hope you are soon home where you can get some sleep and hubby can cook you just what you fancy

hugs

ramade

Member

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

Hello Carolyn, just to reiterate what Mo has already posted.  Hope you start to feel better soon, hopefully you are able to relax and have a good rest.  Hope the steroids aren’t affecting your sleep

 

hugs from Lynne x

Member

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

Thanks for updating us Carolyn. Like everyone I was wondering what you were up to! Hopefully the rads will do the trick........thats the idea! Chemo stopped? From reading this thread cape is often stopped when other things intervene then restarted when appropriate. I assume you are in recovery mode now. Wow........they are prescribing the steroids! Just keep taking them. If pain was a symptom I hope that has settled. If you are still in hospital just lie back and enjoy the room service.

 

basically we are thinking of you and hoping your recovery is steady. Love and hugs,

 

mo.       xxxxxxxxxxxxxxx

Community Champion

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

Hope this posts ..I have tried the threads.  It vanishes in cyber space .

In hospital had emergency radiotherapy for spinal compression. .chemo stopped and I am on 17 steroids tablets a day.  Feel like I'm living in Moo Moo land ..

 

Anyway ladies I still here 💟💟💟💟💟

Member

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

thankyou all for your kind comments. Lynne glad you had a nice holiday. Carolyn is your lower dose working just as well. Bon can i ask why they gave you a blood tranfusion.

i have tried several times to send posts of thanks but the site steals away my posts. i'm actually getting quite upset about the site problems because this is such a lifeline and it used to work so well. i see others are having problems aswell.

Anyway hopefully it will be fixed soon.

hugs to you all

ramade xx

Member

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

Hello everyone.  Carolyn  and Ramade Sorry to hear that you have both been so poorly.. hope that you’re feeling better now and that the bed rest helped Carolyn.  Dehydration is horrible, I had it many years ago when I had food poisoning so am always wary, as you say Ramade it’s best not left too long.  Also Bonariensis..hope that you are continuing to feel better after your transfusion....do you mind me asking why it was given...had your bloods gone to a really low level.

Been away for a week to Spain, we just pottered around and sat in the sun...with hat and lots of high factor sunscreen...but it was a nice break.

I had to miss my 7th cycle but recommenced it last Friday.  During the break my hands healed I was worried that my TMs would increase because they did rise dramatically last summer when I had a 7 week period with no treatment.  However they hadn’t- in fact they fell a little.

Feeling a little tired since started this cycle but not too bad.

Hugs to everyone 

this is my third try to post, when I tried to view in a pop up my post just disappeared so am going to hope this one works

 

Lynne

Member

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

Had blood transfusion today. I know it's a bit soon to count chickens but I did walk upstairs without nearly collapsing this evening!

Back on cape on Saturday. Hugs to all cape crusaders. xxxx

Community Champion

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

Hi Carolyn, sending you a big hug. I do hope you start feeling better soon.

Ramade, same to you as well.

Poor you, both of you. Cape seems such an 'easy' chemo but I don't think there's anything easy about chemo full stop. Hope everyone feels better and that the sun coming out and a bit of warmth will do us all good.

Nicky xx

 

Member

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

Hi Carolyn 

 

Sorry to hear you are having such a rough time at the moment. Can't be nice feeling dizzy and confined to bed. Hope bloods are good and you are able to start pills.

 

Take care.

Linda 

Community Champion

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

I'm still in bed nearly a week now. .have no strength in legs,  dizzyness and blurred eyes etc ...I'm. Happy got DVD tv kindle and coffee maker and feel this is the best thing. My chemo pills stop again tomorrow for a week too. 

How is everyone ? Hoping blood test is ok next week for cycle 10 of peachy pills. 

Ramade ...sorry about the hospital admissions.  I try to eat basic plain food to avoid the explosions! ! 

 

Member

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

Hi Ramade, hope things have improved for you, sounded really scary.

Carolyn have you seen a doc yet? Are things getting any better?

Lots of hugs to both

Bon

 

What a beautiful day. Opened bedroom window to discover farmer spreading slurry 3 fields away.Smiley Sad

Community Champion

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

Ramade, It's scary! Back at Thanksgiving when I got sick I knew I was dehydrated, when I passed out. It scared me, so I went to the cancer center and got fluids. You can't mess with it. I hope you escape and get home to your own bed. Take it easy for a few days and try to get more liquids in you or you will end up going back. Take care. FF

Community Champion

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

Oh ramade 

Glad to hear from you ..I have had problems on this thread. .so many of my replies went into cyber space ! Sorry to hear u are in jail with the trots ....

I was taken off heart pills a week ago as gp doc didn't think I needed them as my heart rate was normal.  Doc said no withdrawal signs by stopping them. Ha ha. .spent a week in bed ..wobbly,  no balance etc. .I had this 7 months ago when I started them. My Hubby has to lead me toilet as I had a couple of falls . Think today has been my best one in a week. Also glottal blurry vision. Oh the joys of it all. Not eating much or peeing much either ! 

Keep in touch as we are a mirror image at the moment with mets and the brain thingy. 

Member

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

Dear cape crusaders, i have not posted this week as rushed to hospital Saturday during the night, very bad reaction with diarrhoea not stopping, pains like labour pains and totally dehydrated(couldn't even speak), finally recovering and go home tomorrow. I expect the dose to be reduced considerably. so, if you feel you are getting dehydrated,get help, i left it too long. Big mistake.

hugs to all

ramade

Member

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

I agree Nicky that we must copy our messages, at least for now. There are gremlins in the threads despite the best efforts of the moderators! But actually good to know that I am not the only one to have trouble. I often think I'm plain stupid! My email saves everything I do, just in case, and calls them drafts, which would be helpful here.

 

I do feel sympathy for your mum. All of you. I lost my parents just a few years ago and I miss them now more than ever. But strangely time helps in that I am getting  used to the emptiness of missing them. It never goes away, but it does become a part of you. Sounds silly. I had to accept that I would always miss them. But grandchildren are a joy! My little Anna.......7........is a whirlwind!

 

All the best to capers! I do my daily homework ploughing through all the advice and good sense on this thread. Gives me courage. I need it!

 

mo

 

PS this reply says it has been autosaved. Not noticed that before. I might check after sending.

 

PPS just posted and it says I must correct highlighted errors, but there aren't any. Trying again...........

 

 

Community Champion

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

Hi mo

I agree the new forum format seems to lose posts quite regularly and saving them beforehand seems the only way to make sure what we’ve spend time writing isn’t lost in the ether!  I replied to a separate post the other day, in quite a lot of detail only for it to be lost. Funnily enough I went to reply to the original post and thought it strange that I seemed to be logged in as I usually log out as soon as I have written something. Anyway it allowed me to post a reply and then confirm I was not a robot and then lost the post as I wasn’t logged in after all. Grrrrrrr.

Anyway thank you as well for your kind words. We are all doing well as a family although I think my Mum is now feeling my Dads death, and absence, more acutely now than when he died in October. I’m sure it will hit us all in different ways and I’m not sure i have accepted it yet. However life, for all of us, does go on and my young grandson is a joy and certainly helps whether he knows it or not!

Nicky xx

Member

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

nicky.........just to say that i wrote a reply to your kind post earlier this morning but it seems to have disappeared altogether, despite me confirming that I was not a robot! No energy to rewrite, but thanks so much for your message. I do hope you and your family are still coping together.

 

quickly re epirubicin. i also wondered if he had said eribulin..........epirubicin so obscure. But my friend's notes plus a check with onc sec confirms that he did offer epi. strange. But for me Mermaid's good advice was that cape is well supported here on this active thread. I could be a cape 'crusader' too, and would benefit from all the shared experience here. I have read through many of the posts which go back quite a long way. Who knows? I may eventually have some advice to share of my own. So I will ignore epirubicin.

 

Nicky, well done for your 11 years on the BCC website! You are an anchor here, keeping an eye on us! I said in my lost message that I will be posting soon on the ablation thread to explain what happened to me, but Mermaid should know that ablation is an excellent option. 3 of my 4 tumours are gone. The last one is small and indeterminate. Because of my new situation involving unexpectedly my left kidney it will not be done as planned. Cape for me now. But for info and sharing I will explain in more detail on the ablation thread. I'm still a bit up and down.

 

So sorry my earlier rambling lost into the ether. I will save first before clicking on 'post' this time, just in case. The new website appearance has arrived with some problems as I know other posts have been lost. Here goes..........

 

mo

Community Champion

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

Hi mo

It's good to see you posting but sorry to hear that the ablation knocked you for 6.  When you have the energy please do add to the Liver ablation thread, if you can find it!!! The new format is rather annoying (I suppose until we get used to it) so threads have been combined (such as the one of 'Inspiring Stories') which has pushed a lot of threads much further down the pages.

As to chemo, I've had FEC but not heard of 'E' on its own, or maybe once in the 11 years I've been on here.  As Debs has suggested did your onc mean Eribulin?  As I've had Capcitabine and Eribulin I can compare the side effects and effectiveness if you want. At the moment a lot of Cape Crusaders are suffering with side effects which is such a shame as overall it is a very well tolerated chemo.  I think it is a case of getting the right dose and hoping that even then you don't suffer too much - easier said than done in some cases.

Good luck whatever the next step is.

Nicky xx

Member

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

Thank you Mo

Ive looked on the American site but epirubicin alone evades me so I would probably go for the cape. There’s a good support group here for the Cape Crusaders plus it seems to work very well for liver and can be taken for as long as it’s working. The side effects seem to vary from person to person but many have also said on the American site that it’s the easiest chemo they have been on so that’s encouraging. Just a thought but you don’t think he made an error and meant to say “ Eribulin” instead?

Take care Mo and will check out your post on the other thread when you feel up to it

xxx