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Xeloda / Capecitabine - Your Top Tips, please?

george
Member

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

Hi Bousy and Nicky, thanks for your replies. Good to have people in a similar position to talk to. Bousy, I am on sixth cycle of Cape; it has definitely shrunk the little critters. One lesion started off as 12mm, but is now 5mm so do try to remain positive it will work. Different for everyon, I know, but it does seem to be an effective treatment and SEs, once you get used to them, are tolerable (In my case, sore hands / feet and dodgy tummy 😯)
Nicky, be great to keep in touch and compare notes. You have done so well to have bone mets for 8years and liver mets for 3. Did the Herceptin keep everyhting stable for that long? Did you not want surgery earlier? Where are you having your treatment? (Sorry for all the questions)
Do let.me know how you get on and, yes, be great to PM. I also have an appointment with my Onc next week so will be interesting to see what he says as I would have to come off chemo if op is way forward. So many things to think of.

Hope other Cape crusaders are doing well on respective treatments. I know one thing, it is blooming cold. Brrr ❄❄

George x
george
Member

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

Hi Moijan and Waffles, thanks for your positive responses, making me feel much better about the thought of having an operation, although things might change after MDT meeting. Consultant hadn't had much time to analyse scan but, I agree, the fact he was talking about an op is encouraging even though I felt scared, and still do, about the prospect of an operation. How is your new treatment going Waffles?
Moijan, might be asking you more questions as you have had surgery. I have read up about the procedure and know it is quite major surgery. I am at the QE in Birmingham which has a reputable liver unit, so I believe. Things are a little complicated as I have only just transfered from another hospital so they have only just received my notes, etc. Oh well, will have to wait until Friday for final decision.
Bousy
Member

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

Hi Nicky and George, 

I only found out 4 months ago that I have liver mets as well as one on left lung and the bone mets as well. The onc has told me one of mine on the liver is 21 mm but nothing has been said about it. I am just finishing second lot of cape and haven't been too bad.

I started on Docataxel in February but after second lot I had a perforated bowel as diverticular had burst. Not had any chemo since so hope the cape works. I don't want docataxel again as it was bad.

Hope you both get on ok.

 

Liz x

nicky08
Community Champion

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

Hi George

Im exactly in the same position as you so maybe we can buddy up?! I have had liver mets for over 3 years now (and bone mets for over 8 years now). My liver mets have responded really well to the treatment I'm on (Herceptin and Perjeta) but one rogue lesion is playing up - the other 4 have now disappeared. The thought  was RFA, even though my lesion is slightly outside the parameters, but now we are talking surgery just to make sure everything is removed. My lesion is on its own in the right lobe so surgery is considered to be fairly straight forward  (if ever it can be!). I am waiting to hear back from the MDT meeting this morning but I have told my onc I will want to have surgery if it's the best option. Luckily for me our local hospital has an excellent liver surgeon and team and they perform liver surgery on secondary as well as primary liver cancer patients so I feel I would be in very capable hands. Maybe once we know what our individual plans are we can compare notes by PM or on here?

Nicky x

ps Hi to all Cape crusaders - hoping the treatment is being kind to you but killing those m

nasry little uggers off relentlessly!

Moijan
Member

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

Hi George

 

i had a third of my liver removed due to a pre cancerous condition...the liver does regenerate....but yes, the thought of the op is 'yikes'

 

however, it is less usual to do hepatectomies for bc secondaries, so if they are suggesting that....they must have confidence that it would be helpful...ask lots of questions!  So you can make a well informed choice. 

 

Not sure where your hospital is, or if it has a liver unit? But Kings College Hosp london has a world renowned liver unit...you may want a second opinion?

 

very best wishes,

 

moijan💚💚💚

Waffles
Member

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

Hi George,
I know getting bits of your liver removed sounds really scary but the fact they think it is worth doing and your mets are so tiny is great news. Good luck with whatever treatment you choose. xxx
george
Member

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

Forgot to say, he was talking about removing a third of my liver as I have 3 lesions, one at top of right lobe and 2 at bottom. Yikes and double yikes!
george
Member

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

Hi Moijan

Thanks for asking. Bit of a mix up really as MDT meeting had not considered my case as scan had not been read. I had to wait 1.5 hours on Friday while radiographer read my scan and then consultant came up with a few proposals, main one being an op. I thought I could have RFA , but apparantly lesions too small, biggest one is 5mm. Good for me, but not for them. Have to go back this Friday when MDT meeting will have taken place and there should be a definite plan. However, op looks likely 🤕😷😨. Hope all well with you

George x
Moijan
Member

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

Hi George,

 

how did you get on at the hospital? Hope all was well?

 

Moijan💚💚💚

george
Member

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

Yes, think it is as Onc always used to ask me about my hands and feet. I used to get some leg pain while on Taxol. Always best to check with your team though. Hope you are managing to get some rest. On train to hospital. Yikes😯
Abney
Member

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

Think the chemo symptoms kicking in as have had tingly feet all night! Will mention to nurse tomorrow but does this sound normal for palitaxol? I'm pretty sure I got this on Fet/t too! X
Abney
Member

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

Thank you Barton xxx
Abney
Member

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

Thank you Bonareinsis xxx
Abney
Member

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

Sending you a big hug George and all the best. Thinking of you xxxx
george
Member

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

Thanks, Bonariensis. Trying to remain calm, but not succeeding. Can't even have a drink as due to take Cape tablets in a minute. Oh well, this time tomorrow will know. Have a good evening. Hope things going well for you

George x
bonariensis
Member

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

Hi Abney

Glad you're home, Take it easy, easier said than done I know.

 

Hi George

Best of luck with your scan results tomorrow, will be thinking of you.

B xx

george
Member

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

Get results of MRI scan tomorrow. Terrified. Doubt I will sleep tonight. Yikes 😯
Barton
Member

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

Hello Abney, glad you are home safe. Hope you feel less exhausted soon - it probably is the cocktail of drugs you are on, but take it easy and rest as much as you can. Hope the new chemo works for you. 

 

Hugs. Barton.x

george
Member

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

Hi Abney

Must be a relief to be back home. I bet your little boy missed you. Make sure you take it easy. Glad to hear chemo wasn't too horrible, think it is one of the 'easier' ones - if such a thing exists. Hope you have lined up lots of dvds to watch while you recover. Spoil yourself x

Hugs, George.
Abney
Member

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

Hi ladies I got out of hospital yesterday after two weeks in! Just adjusting to being home again but just feels so strange! I'm so exhausted but I think the chemo this week was ok. I think it's all the other medication I'm on making me quite spaced out! Back for more chemo on Monday. Just hope it works. Still can't quite believe what happened!! Hope I can get my strength back soon but a relief not to feel as ill as I did before!! Sending lots of love and sorry for short post. Xxx ps thank you so much for all your well wishes xxxx
bonariensis
Member

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

Hi Helen I'm not a Cape friend but I'm a friend and hope things settle down and you feel better soon. B xx

george
Member

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

Hi Abney

 

Glad to hear things are picking up for you and that you are managing to get a rest. Sure you are being well looked after in hospital. As I said, I was on Taxol for a year and I did find it manageable. At least I had a good week off. No major side effects just slight nausea and occasional dodgy tummy, but that is chemo for you. Keep us posted.

 

Hi Helen, I too find week off challenging. With me it is the big D, real pain as have to be so careful what I eat. Usually lasts for a couple of days.  I felt tired during first few cycles, but not so bad now. As others have said, you can ask for a dose reduction. My onc said lower doses are just as effective and it is something I might ask for as I have been on maximum dose for 5 cycles now. Going to see how I get on with this cycle during week off. Also, seeing liver specialist on Friday as I have mets in liver so waiting to see what he says. The waiting, as we all know, is excruciating. However, signs so far have been good on this chemo and blood results indicating it does seem to be working. Hope you are feeling less fatigued.

Hugs  to all 

 

George x 

Moijan
Member

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

Hi Helen!

 

yes, like the others, I had an awful first two cycles on cape..then they reduced it and made it 1 week on 1 week off...and after that I was fine. So sory its knocking you out.....hopefully once your body adjests you will feel much betterxx

Moijanxx

Barton
Member

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

Hello Helen, yes, I'm afraid Nicky is right - the week off tends to be the worst - the following week(1st week back on pills) is a bit better, then it starts all over again! I did find the tiredness does get a bit better as you go on, though, although I do sleep better the weeks on the pills!

 

Good luck, Helen, and hope it works for you.

 

Hugs. Barton.x

nicky08
Community Champion

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

Hi Helen,

I was on Cape back in 2013 and it took a few cycles for my body to adjust to them. I really thought of moving onto another (IV) chemo! Which shows how bad it must have been. There was a very old thread on here about the week off being the worst so I expected that however it did get better after a few cycles. I think we have to remember that is still chemo, even though we are administering it ourselves so it's no wonder our body complains. I suffered a few incidents of the big D, as has been described recently on here, but overall tolerated it well. It may be worth asking for a dosage reduction as the oncs tend to put you on the highest dose, for you, first and adjust it down if needed. I stayed on Cape for about 18 months on an 80% dose and it still worked really well so don't feel alarmed  if you reduce the does - it is a life balance!

Hope you feel better soon.

Nicky x

HelenAquarius
Member

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

Hi Cape friends. Heeeeeelp!

had first two weeks on the tablets - now on my week off - and am feeling utterly fatigued. someone please tell me this will get better!!

 Xxx

Barton
Member

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

Hello Abney, so lovely to hear you are feeling better, and you sound more cheerful in your post, too. Sorry to hear you are having to go through another chemo, though, but I suppose that is the fate of all of us on this section of the Forum now. I hopd it works it's wonders for you.

 

Hugs. Barton.x

Abney
Member

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

Hi ladies just a quickie! I wrote a long post yesterday and lost it so that was frustrating! Just to say I'm still in hospital but start Paxcitaxol tomorrow! Can't say I'm overjoyed by the thought of going through chemo again but I have to do it! Slowly feeling stronger and actually it's not too bad being in hospital as im actually resting! Could be the shed load of drugs I'm on! So I'll be on a weekly dose with a weeks break and having six cycles! Let's hope it does the job!! I finished radio on Thursday so hopefully that has had some affect! Will keep you girls posted and I do hope you are all ok? Sending lots of love xxx
george
Member

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

I know. All various tubs covering my bedside table, no room for anything else. Shame I can't use more exotic creams. Feet still red, but not causing any pain at mo. Fingertips sensitive. Perhaps might wrap myself in cling film tonight after apply creams (joking, honest. Think might be a bridge too far for hubby🙄)
Enjoy rest of weekend. I am having a couch potato evening. Too cold to go out. Brrr
Barton
Member

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

Wow, George! I think you have yourself covered (literally!Smiley LOL) with creams!

 

Hugs. Barton.x

george
Member

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

Hi Annemay and Bousy, sorry to hear your are both feeling under the weather. I always feel worse during my week off. Feet were sore last week and big D kicked in on day 17. However, feeling much better today, on day 2 of cycle 6. In my case, I sort of know when bad days will be and plan accordingly. I was fed up last weekend as I was in Manchester with friends and had to watch them eating lovely food and drinking red wine while I had to make do with water and bland food. (Day 17)Eating normally this weekend again, to make up for last weekend😊. Do hope SEs subside for you, sure they will.
Barton, thanks for tips re: Doublebase. I bought some today from Boots. I have Udderley, Aveeno, Flexitol, Vaseline, Sudacrem and now Doublebase. Over the top or what? Actually, Vaseline has helped the most and Sudacrem eased sore toe- you can't beat old favourites😊

Hope things ease up for everyone.

George x
Barton
Member

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

Hello Anneemay and Bousy, sorry to read you are both feeling grotty at the moment and suffering some of the Cape se's. All I can really say is stick with it and hopefully you will both see some good results from it.

 

Hugs, and hoping you are both feeling more yourselves shortly. Barton.x

Bousy
Member

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

I take domperidone first thing in a morning, usually works but not today.

 

liz

Anneemay
Member

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

Sorry to hear that you are feeling under the weather as well Bousy, are you taking anything for the nausea? I was given Metoclopromide which I took for the first 3 days when I started treatment and luckily enough I have not had to take it since. Ann xx

Bousy
Member

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

I know how you feel. I've just started 2nd cycle and feeling under weather. I had a temperature last week so on antibiotics as well. Feel sickly and not up to doing anything. Runs not really kicked in yet but I have a stoma so  I have no control of bowels. Hope you feel better.

 

Liz

Anneemay
Member

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

Hi all, feeling a little fragile at the moment, now completed 2nd cycle and on week off and se have now kicked in. Have been putting Udderly cream on sore feet and hands twice daily which I think has helped as they are not peeling. The diarrhoea is keeping me more confined to barracks at the moment and my appetite is definitely diminished so as I say feeling a little bit sorry for myself. I just hope that the Cape is working in drying up the fluid around my lungs as that is the plan.

I know I should be more positive but it is difficult sometimes when your physical symptoms grind you down. Ann xx

 

 

george
Member

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

Hi Barton and Moijan

Thanks for your tips. I have a tube of Aveeno next to sink so when I wash up, I can apply some straight away. Feet less sore, but sure that will change when I get to day 14. Anyway, mustn't complain, had a good day today - went for a walk in the park and chilled watching some rubbish TV. Seeing liver consultant a week today to see if he can do anything about liver lesions. Starting to panic in case he can't do anything. Will have to wait and see.
Glad your chemo is working for you, Moijan and pleased all well with you, Barton. Amazing how we manage to adapt to having chemo in our lives, but we do😊
Have a good weekend all
Barton
Member

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

Hello Moijan, yes, you are right, plasters can get nasty, especially during the day. However, I only apply them at night with the cream, so it can all work its magic while I am sleeping. I always remove the plasters first thing in the morning. Soggy plasters are horrible!

 

Also, I agree about the Aveeno hand cream - I bought another tube in Boots yesterday in fact, so that I don't run out.

 

Hugs. Barton.x

Barton
Member

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

Hello George, yes, I get the peeling and splitting finger tips too. However, it is not the plasters the Registrar objects to - it is the Savlon, which is why she suggested Doublebase. No, I don't have a gel, it is a cream in a tube and the hospital gave it to me - firstly when I was having radiotherapy in 2011, then when I started Cape. I should show your fingers to your Onc or chemo unit and ask them for the Doublebase (I don't think you should have to buy it!).

 

Thanks, all is well (as can be while on chemo!) with me. Sorry to read you are having problems with your toes. Mine, luckily, are OK, although I have lots of dry skin on my heels - not being good about creaming my feet, I'm afraid!

 

Hugs. Barton.x

Moijan
Member

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

Hi Everyone,

 

George, sorry about the fingers....glad Barton is able to help. As I have lymphoedema, I kept getting cellulitis on cape, and I then decided to wear thin laytex glove on that hand when doing something where there may be lots of germs. i think it worked! Now im on Eribulin, my fingers are fine!

 

sometimes, plasters can pull off bits of skin when you remove them, or they can get wet, both of which can leave you vulnerable to bacteria. But, i  suppose like you, I have always put Savlon cream on any abrasions and  i  have covered up deep cracks with plasters. I think different oncs have their own ideas.

 

aveeno is another good cream for feet and hands. i now put a lot of e45 on my arm to keep it nourished and I even put it on my face!

 

but double base is very good indeed,a large tub costs around £11, so try your gp for a prescription

 

 

Abney, how is it going?

 

 

hugs, Moijan

💜💚💜

 

 

george
Member

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

Hi Barton

 

thanks for the tip. Googled Doublebase-is it the gel you use? Do you get peeling finger tips too? Do you know why you were advised not to use plasters? Big toe also red and swollen- not serious, I know, just seem to be lots of little things at the moment. It is my week off too. Taken an extra day's holiday from Cape as should have started it today, but starting tomorrow. 

Hope all well with you

 

George x 

Barton
Member

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

Hello George, thinking of you. Hope things improve with fingers etc. My Oncs Regitrar does not like me using Savlon and plasters on my finger tips, but she said I can use a good moisturiser instead - she suggested Doublebase (the one they always give you in hospital). I tried it the other day, and (although I hate to admit it) it does work better than Savlon. Give it a go overnight.

 

Hugs. Barton.x

george
Member

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

Hi Moijan

Not doing too badly, went to see Full Monty yesterday which cheered me up😊Needed it as had MRI today-get results next Friday. Scan anxiety already kicking in. Also, start cycle 6 of Cape tomorrow. Feet getting sore and skin on finger tips peeling despite regular moisturising. Oh well, on train home now and looking forward to a nice cup of tea 🍵😊

Hope all well with everyone else. Abney, hope things are picking up for you.

George x
Moijan
Member

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

Hi Barton, thank you...just had a lot of commitments all at once...xx

 

hi George, Stacey and everyone. I hope life is going well for you all?

 

 

hugs,

Moijanxx

Moijan
Member

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

Hello Abney,

 

what a time youve hadxx so sorry to hear you are still going through it. It feels so very lonely when youare in hospital, doesnt it? I recall being very frightened and extremely fed up!  

 

Now the fluids drained, maybe you will start feeling a bit more comfortable and better equipped to face the chemo. Yes, rads do make us feel tired, and with all this going on around you, do you feel a bit powerless? I think I  did. .......was just thinking that maybe the 'head space' programme might help you get a little respite from all the anxiety which comes at times like this. Have you got headphones and a device you can use?

 

Please remember we are all here for you....sometimes we dont post as much as others, but you are in our thoughtsxxx

 

Moijan💙💚💙💚💙💚

 

Anneemay
Member

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

Hi Abney, good to hear that you are now breathing better now that they have removed the fluid from your lungs, I know how scarey that can be as I was in a similar situation this time last year. My secondaries are in the lung and pleural space which caused me to have pleural effusions and this caused my breathlessness. Thankfully a year on after having Pleurx catheters inserted to manage the recurrent effusions,  I am now able to get on with life. I have found that taking one day at a time and dealing with whatever it brings is much more manageable for me as it helps me to focus on living in the moment and not dwelling on what the future might hold. So keep positive, it sounds like you are receiving good care and treatment and you will get through this, although you are probably finding it difficult to believe at the moment.  Hugs Ann

george
Member

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

Hi Abney, thanks for updating us. I have been thinking of you and such good news they were able to drain your lungs and heart doing well. You have certainly been through the mill this week to say the least. Easy for me to say, but try not to worry about the chemo - you have enough going on. I was on Taxol for 12 months and found it very manageable, easier than Cape in many respects. Hope things continue to improve for you.

George x
Barton
Member

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

Hello, Moijan - nice to see you back! Hope your new chemo is doing it's stuff for you.

 

Hugs and best wishes. Barton.x

 

Barton
Member

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

Hello Abney, so sorry you are having such a rough time at the moment! Hang in there, and get them to explain everything to you! Hope they sort you out soon.

 

Hugs, and best wishes. Barton.x

Stillhere
Member

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

Hugs Abney, thinking of you. Your team sound as though they have got things under control, try not to worry. You must be relieved that your breathing is easier now, keep us posted xx