Xeloda / Capecitabine - Your Top Tips, please?

[angela60]

Sorry I keep.starting new threads by mistake,that's me and technology not good combination 😀anyway just started 4 round on cape been better since changed my metoclopramide for cyclizine and reduced my dose slightly from 2800mg to 1500mg twice a day I was like a zombie!! Got scan in 2 weeks bit worried as I have a cough and wheezing so worried bc has spread beyond chest wall.to lungs, seeing oncologist on 5th April after scan,constantly at back of my mind what if!!! Always think the worst eh.but did enjoy that one day if warm weather even though I was at hispital most of afternoon for my check up Oh well.hugs to all xxx

[Moijan]

Hi Barton, the lovely lady you advised about threads has begun a new Cape thread, by mistake...have just pasted in the link for this thread, as she will likely get better support on here

hugs, Moijanxx

[Moijan]

Babsy...was looking, bu cant see...did you paste a lnk to the integrative oncol?

best wishesxxc

Moijanxx

[Babsy]

Well the integrative oncology service states that it helps chemotherapy do its job more effectively, helps treatment related fatigue, helps rid the body of toxins, helps the transport of nutrients to the cells and alters the bodies ph levels producing an alkalising effect on the tissues. So multi factors.  I also jump on a rebounder in five minute sessions for five minutes at least twice a day. 

[Moijan]

Babsy,

can you elaborate about the hyperbaric oxygen please? I know its good for lymphoedema, why are you on it tho?

hugs, Mojanxx

[Babsy]

Hi Jacquie, not in the first week but then I started following the programme of supplements that I had been given in full. Currently I take Lypo-Spherical Vitamin C in the morning in a green juice mix with organic orange juice. I've also just started hyperbaric oxygen therapy this week so will be interested in the effects of that. After two sessions do feel a little more energetic, so fingers crossed . 

[Movetothecountry]

Babsy - do you take the vitamin C as well as the Mico Sol?
Never thought a birthday wish list would get so medical!
Many thanks Jacquie

[Babsy]

Hey Racer, glad to hear that you are home. Did you see my post about the medicinal musherooms that I took to boost my platelets? There is this big study with stage IV bc patients in Spain and they have had tremendous results with them. After four days mine were boosted from 0.94 to 127 and another week after that to 154. I listed a picture of them on earlier. You can buy them from the Spanish company on label for about £57 for a month's supply. They were recommended to me by an integrative oncology service and even my normal oncologist wanted to have the name of them after seeing the results. Hugs xxx 

[Moijan]

You are right, of course xx. Its a real shame that she doesnt get overheard by someone senior to her.

the very worst thing you could do, is to be 'So, Very Extra Sweet' to her and thank her whenever you can......

when shes being a b*t**  you could say, with a really warm smile on your face ' oh, thats so nice of you'

0r you could try another tack  ' are you ok?' 'i thought you were looking really anxious this morning.'

my guess is she  must have some awful problems that she deals with........, by picking on you! 

[Barton]

Thanks, Moijan. Yes, I do know that, but I really don't want the hassle! I couldn't stand up to a tribunal (or whatever) and I really can't bear the thought of using time that way. I know she is very careful about what she actually says (as opposed to implies), and who she says things in front of. I only hope that if she ever ends up seriously ill (and I don't wish it on her!), she remembers, and no-one treats her like this. I know our HR lady has knocked her back a couple of times a while ago (which is why she is careful about what she says).

I am lucky in that I now have PIP to fall back on. I feel sorry for my friend there who still has to endure her!

Thanks again, Moijan, for the moral support.

Hugs. Barton.x

[Barton]

Hello racer, so glad you have managed to get home, and that things are looking up a bit. Well done for sticking to your guns! You deserve to be allowed to stay on Cape if you wish! Sorry to hear about the breakthrough pain, but I hope you are getting on top of that again now you have your prescription meds.

I think it is bad the way the doctor spoke to you though - you should never be made to feel like that.

I bet your kids were really glad to see you home, I expect they just didn't want to overwhelm you when you first got home.

Hugs and best wishes,

Barton.x

[Moijan]

Racer! well done xx

You cartainly have a strong fighting spirit and you should be proud of yourself xx

Focus upon your goals and upon living each moment to the full. We - All of us, only have the present moment, that's all there is.

Am praying you enjoy very many more 'present moments' with your family.
Keep us up to date with how the cape goes.

Much love, Moijan

[Moijan]

Barton... as a seasoned bc lady I know you will know this.... but remember as cancer patients we have some protection in law... what the lady is doing, is actually 'constructive dismissal' which can be taken to a tribunal and if upheld, you would likely be awarded compensation!

I know that would be stressful but you could speak to hr in confidence . That lady is surely a 'dogs mother 'xx don't let her do it to youxx

Moijanxx

[racer]

Hi everyone , I got home at about 7.30 tonight . Glad to be at home. Kids are sort of happy that I am at home. They have all gone separate ways never mind lol.
Discharge from Hospital were delayed due to problems with pharmacy.
Just really tired as had to have break thru pain relief as prescription chart was at pharmacy. Nurses were not happy as I was in quite a lot of pain .
The Doc said I had to stop cape tabs and also antibiotics as no signs of infection. Also the spikes in temp due to the disease and platelets were 48 on Monday but dropped to 38. I felt that the Doc was talking to me she had written me off. I told The Doc that I am only 48 and still have fight in me . That I wanted the treatment and know it won't cure me. It buy me some time.
Anyway I am restarting cape again today and feel I am doing something positive . Trying not to stress mmm think that will be a while with the kids.
Anyway hope everyone is ok and send love / hugs to you cape crusaders .
Xxx

[Barton]

Yes, she is. She is driving me to resignation almost single-handedly. Thanks for the clingfilm "image", Moijan! Unfortunately it wouldn't work - I'm liable to catch out the wrong person - it's a large, open plan office with loads of people working there, but would LOVE to see that (need a hidden camera!).

All the best. Barton.x

[Moijan]

Actually Barton,

the " harpy" lady sounds a bit of a pain in the "bleep". Lol

you know what id try, if I could get away with it anonymously?  Work out what time she usually pops into the ladies..,,,nip in slightly earlier and slip a peice of cling film over the toilet bowl,( under the seat.)

works a treat!  ( apparently, its a  very insightful experience)

Mx

[Moijan]

Lovely to see you Barton....the mirror thingy was a joke lol xxx

anybody seen the chocolate lady? Saw this and immediately thought of her....

[Barton]

Hello Moijan, sorry you get them too! Haven't tried the mirror thing, and I'm afraid I can't try drinking from the other side of the cup in the office! Water/lemonade/coffee all over the desk! I have to keep working, as the Harpy has a full view of me at my desk and I got them probably over a dozen times today and yesterday. Thank goodness I only do two and a half days a week at work, and I'm going to give up completely soon.

Love the horse!

Hugs. Barton.x

[Moijan]

Hi there Barton,i have had hiccoughs quite a bit, but not related to cape....

i usually try to look at myself in the mirror...have you tried that? A  Good shock can help!

or try to drink a cup of water from the wrong side of the cup!

do you like my new avatar? Its Withasmiles horse.....showing a lovely smile!

Moijanxx😍

[Barton]

OK, Cape Crusaders, is anyone else suffering from hiccups? I keep on getting them lately, and once they start one day, they keep coming and going all day! Extremely irritating! I have read the se's on the Cape leaflet, and it is one of the slightly rarer se's. We have a particularly mean boss at work, and I have been told my hiccups "have been noticed"! You what! It's not as if I enjoy getting them!

Sorry - rant over. Had to get that off my chest.

Hugs, Barton.x

PS- I hope everyones se's are as mild as hiccups!

[Barton]

Hello Marie, I'm sorry I didn't reply to your separate post, but as we had messaged privately about this, I was assuming you wanted someone elses opinion. You are clearly very worried about her rising tm's, but it looks to me as if her Onc isn't bothered yet. Many Oncs don't even ask for them as they say they are unreliable as an indicator. Please try not to worry unnecessarily - at her Onc meeting for the scan results, ask him/her then if they intend to do anything about the results, or what they think they mean. Ou will then get the information "from the horses mouth" as it were!

Wishing you and your Mum good luck and best wishes.

Hugs. Barton.x

[Marie14]

Hi all,

I really hope you don't mind me posting. I always feel like I'm a bit of a pain as I always have so many questions.

I post to ask about my mum who has been on capecitabine for a little while now. She is currently on her 9th cycle. Last scan results were good and showed reduction in tumour size (fantastic news). She has just had another scan so scanxiety has well and truly set in. I'm a complete worrier anyway to the point where I have just read pages 115-144 on this thread before plucking up the courage to write to you all.

When my mum had her appointment before Christmas her tumour markers were 55. They then continued to fall as low as 36.

She then saw oncologist who decided to reduce her dose ever so slightly. Since then her markers have risen ever so slightly (46, then 62, and most recently 78).

Could this be the dose reduction?

Mum feels well in herself, she suffers with lymphodema which causes her pain, bless her.

I hope you don't mind me posting. I just want to find out information to help my mum.

Thankyou all so much in advance xxx

[george]

Hi racer

Glad to hear the nursing staff are looking after you and that you are going to get a bit of pampering. It is so nice to be treated like a woman rather than a cancer patient. I am sure your daughter's school will make allowances for her mocks under the circumstances. Hope you manage to get some rest tonight.

George x

[Barton]

Hello racer, glad you are feeling well enough to post. Also glad the nausea has reduced a bit - nasty feeling, and horrible not being able to eat. Well done for the walk along the ward.

Enjoy the pampering tomorrow!

Look after yourself, and listen to the hospital staff. You are in the best place for now (although I know you really want to go home).

Hugs. Barton.x

[Moijan]

Yes Racer, so glad to hear from. You. Sounds a lovely hospital .... hopefully you will feel better after the cossetting.......

Best of luck with the cape on a lower dosexx
Moijan
💚💚💚

[Carolyn52]

Hello racer
Are you sure you are in hospital and not a five star hotel? Hair and nails ..wow enjoy.
You are on the safest place although I expect u want to be home with the family but there is good medical care 24/7 there until you are more stable.
Sending loads of hugs and we are all holding hands in cyber land for you to feel better.
Hugs xxxxx

[racer]

Thanks everyone I appreciate your support. Still in Hospital . I was not very well yesterday and could not eat anything. Been prescribed extra anti sickness which is helping. Feel better today and went for a short walk along the ward . Had to sit down for a rest which is a small positive step towards going home.
Don't know when I will be going home yet. It can't be tomorrow as I am having my hair wash/cut and blow dry tomorrow afternoon at the hair salon in the Cancer unit lol and might even have my nails done too ! Think I will feel more myself.
I have a bed by a window so have a good view of the car park and road. Been watching the antics of bad parking lol. But it is a miserable day here.
Still not told the kids due to my Daughter's mock exams but nursing team here said they should accommodate Catherine with what is going on. So we are getting in touch with the headteacher to see what support/options my. Daughter has .
The nursing team here have been fantastic here and are flexible with visiting. My hubby had been able to drop kids off at School and comes to see me until 2ish so at least we can talk about things. There is just one Senior Nure who rang the bell at the end of visiting just a couple of times while I have been here.

Hope everyone is having a good weekend and positive vibes to anyone who is not feeling well. Hugs to you all and I will keep you posted
Xxxxxxxxxc

[george]

Dear racer

So sorry to hear your news and I can only echo what everyone else has said. I can't imagine how devastating the news must have been and hope that the Cape keeps you stable for as long as possible. You sound like an incredibly brave, strong woman with a loving, supportive family. Sending you my very best wishes -  I will be thinking of you.

George x

[Barton]

Oh racer, I am SO sorry to read your news! It must have been devastating! Not having children myself, I find it hard to fully comprehend your worries for them, but I truly sympathise with you. I know how hard it was telling my family of my Secondaries diagnosis, so can understand how many times more difficult it must have been for you to tell your parents this news. I think you are doing the right thing in keeping going with your chemo, but it all has to be YOUR decision - don't let the docs dictate to you what they want - I hope your hubby will fight your corner for you, as any disruption is the last thing you need at the moment.

I am thinking of you, as I am sure everyone else on the Forum is, too.

Hugs and best wishes. Barton.x

[Moijan]

Hi Bousy, wet and horrid here too

Have just cheated to park my car... see you all later👀
Moijanx

[Carolyn52]

Hello racer
Just wanted to send you lots of special hugs and thinking of you. At least you are in the best place ..down in Devon ...it's cold and wet ..ugh ..
Carolyn xxxxxx

[Bousy]

Hi Moijan,

It's cold and wet here in Yorkshire, very miserable.

Liz x

[Moijan]

Hello everyone, how is everyone today?

My little neck of the woods is wet and coolish xx

Love and hugs

moinan

[nicky08]

Hi racer

So sorry to hear what your oncologist has said.  I do hope that the lower dose helps you and allows you to pick up.  Are you still in hospital?  If so I hope that you are being looked after well and getting all the care you need.  Take care, big hugs and thinking of you.

Nicky x

[Moijan]

Yes,Lovely Helen is quite right...

..and I forgot to add that you are entitled to request another opinion...but obviously that could involve travelling and im not sure that travelling would be good for you just now??

focus on staying positive, getting lots of rest and eating small frequent  but nutritious meals. Have lots of time with those who love you....We will be here for you xxv

Moijan💚💚💚

Have pm'd you xx

[Moijan]

Hello Racer,

sorry I hadn't replied earlier, have been pretty hectic today and my b ipad is playing up xx

what a shock for you....how dreadful for you to be given such news. Xx

.

(the onc has got to tell you as he sees it......and by telling you...has given you pause to organise your thoughts and decisions)

I hear what you are saying...you want to fight xx   you do have choices...even tho it might not feel like it.

my immediate thoughts are:- you hold on to your goal of getting your daughter through her prom...a mothers love is a big powerful driver and none of us..........even your onc, have got a crystal ball

regarding the DNR.....that is your decision..you are still well enough to make your own decisions and the hospital will have to abide by your own choice....speak out and be clear about that choice, ask them to show you that it has been clearly recorded...

As you say, you are wise to try not to waste your time on what might have been...try and focus on what it is that you want.

Racer, you have been given a kick in the teeth...im so sorry, xx try very hard to keep your focus on whatever decision or choices you decide to make. .Xx much love and hugs,

Moijanxx. 💚💚💚

[HelenAquarius]

Racer I'm so sorry to hear your news. I can't imagine what you are going through right now - good for you for wanting to keep on fighting. Sending mega cyber hugs to you and your family - I hope you have many many months ahead and that you're surrounded by love and support. 

helen xx

[racer]

Thanks everyone. It has been a difficult day today . I finally saw my Oncologist. I had a ct scan on chest and abdomen .
Not good news I am afraid. Onc told me that breast cancer has progressed and become more aggresssive. It is in my liver and have inflammation in my lungs. He said He doesn't think I have much time left. Onc said he is worried if I have an internal bleed or my heart could give out as I get weaker.

We are absolutely devastated and been hard telling my Parents . We have decided to not tell the kids yet as my Daughter has mock exams for two weeks.

Oncologist said I could continue on the cape tablets but quarter strength as Chemo will destroy platelets. I said I am not giving up and will fight this . Just want some more time especially as my Daughter has got her Prom in June.
Just feel cheated and angry as I am sure that alternative meds sooner but I don't want to waste my time on what could have been .
I think what upset me most that the Onc wants to put a DNR in place.
I am sorry about this news but you all have been so supportive and kept me going .

Xxxxx

[bonariensis]

Good news Barton! So pleased. B xx

[Barton]

Quick update - Onc visit today, and blood ok this time - massive relief that something is happening again. It seems ages since anything happened, but of course, only really 4 weeks if you include the week off of the last cycle.

Hope everyone else ok, or at least comfortable and being looked after (racer!).

Hugs. Barton.x

[Moijan]

Racer, hope you have also had a good day?

have you managed to revamp that ward yet?  Dont you just feel sooo like rearranging all the beds into a circle.....and starting off  a group sing song?

 i was always tempted to start a mutiny,    or to sew nail brushes on the bottom of the curtains...to see if Sister noticed? 

I suppose, now, you could casually elbow the fire alarm as you pass by on your way to the loo?

have a good restxx

Moijan💚💚💚

[Moijan]

Ooh, Babsy, just saw the jar...am so peckish now!  They seem to b doing wonders tho...

hope today was a good one for you.

anyone seen Carolyn?  Please tell her I was looking for her, naughty lady xx

Moijanx

[Babsy]

[Barton]

Hello racer, so sorry to hear you are still in hospital. I understand you hating it, but, as everyone else has said, you are in the best place at the moment. Your exhaustion is evidence of that, and the hospital staff know best!

I can understand your children missing their mum, though. Hard on everyone.

Hugs, and thinking of you. Barton.x

[racer]

Thanks Moijan xxxxxx

[Moijan]

Just tread water for a while..,,,,best go home when you are a bit recovered.

Moijanxx

[racer]

Hello everyone, Thanks Moijan . I am still in Hospital and won't be going home just yet. Trying to sort my pain relief and bloods. Feel fed up as I am now worrying and just want to go home.
Nurse said they cannot send me home due to platelets which as you know have been for a while.
I think I got my hopes up as Discharge co-ordinater came to see me what I need at home as equipment .
Feel very tired at mo so do excuse me if any of my words do not make sense lol.
I have had a sicky day today and not eaten much. Think due to new painkillers and having potassium.
Visiting time pressures have eased as we can sit in a quiet room .
The kids are desperate for me to come home. I know if I go home then , I will be back in. Just been told that there are a few people waiting in a and e for a bed. So best staying here. Sorry I am. Not positive at mo just need to concentrate on getting gome.

Hugs to everyone .
Xxxx

[Moijan]

Hi Babsy
Did you mention which mushrooms they are?

??

[Sandra59]

Hi Babsy, i'm very interested in your mushrooms!  My son has been doing some research and found that different mushrooms are used around the world for cancer treatment, he has been out picking mushrooms  that grow on birch trees, that are used in Japan, and making a tea from them which he served to me when he visited, they didn't poisen me which was good! He's fairly knowledgeable about plants and very into natural remedies but i must admit i am quite sceptical about these things.  After reading your post i am wondering if he may be on to something.

Hugs Sandra x

[Babsy]

Hi Moijan,  well after taking them for four days my platelet levels went from 0.94 to 127. So pretty impressive! My white blood count went from 2.4 to 3.8, Lymphocytes from 0.87 to 2.18 etc. So all white blood cells improving. Having another blood test on Monday 6 March as onc has given me a 10 day break from Cape.