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Xeloda / Capecitabine - Your Top Tips, please?

Member

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

Hi racer

 

sorry to hear you  have been having such a rough time with your bloods. Hopefully, thinks will settle down soon and they will finalise a plan. I know it must be very frustrating. Pleased to hear you got to stay in a posh hotel; important to treat ourselves while we can. 

Barton, hope you get things sorted too so you can restart Cape again. Regarding drinks, I tend to drink fizzy water with a slice of lemon as I find it very refreshing.(I have to admit, I am partial to a glass of red wine now I am on a chemo break. Needs must ). Looks like op going ahead 2 weeks today, depending on availability of HDU bed. Yikes. Making the most of being chemo free, feels good to get my body back if only for a short time.

Hope all goes well with treatments. 

 

George

Member

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

Aah thanks Barton . Just hoping they can fix these problems and I can get on some regular treatment. Think there will be a few questions on Thursday my Hubby wants to complain .I just don't want to waste my energy and get stressed.
We did manage to stay in posh hotel . My youngest was too excited so was a bit of handful but it was nice. I like my cooked breakfast but could not face it especially with having such a dry mouth. Just NHS are under slit of pressure and never stop working. They are looking after me. My Hubby is getting annoyed as my Consultant not been to me but I said Doctors on the Ward here are treating my symptoms and won't answer questions about treatment plan.
I am sure there will be a plan . I am giving them a headache at least in right place . Don't want you worrying as you are going thru iit as well. On the plus side I have my own room that is ensuite ok not posh but it is private .I am not googling about my symptoms just staying focused . I will keep you updated .

Xxxxxx
Member

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

Good to hear from you, racer, but so sorry you have been feeling so unwell. Another night in hospital - you poor thing. I hope they are looking after you properly. Sorry you had to wait so long for a bed.

 

Such a shame about your 2 days in Somerset - I bet you were looking forward to those. I hope you managed to get your night in the posh hotel, as you don't say.

 

Glad I'm not the only one struggling with what to drink. I can drink milk, as long as it is either really cold or really hot - can't drink it in the inbetween temperatures though (I know, I'm really odd!). I like hot chocolate, but of course that has way too much sugar, so have to limit myself to one every few days. Oh well, back to the water. Actually, I don't drink that "straight" - I add a tiny bit of lemonade, which flavours it a bit without adding too much sugar or artificial sweeteners. That is quite refreshing.

 

I do hope you are put of hospital soon, and that they sort your blood out for you - my problems are nothing compared to yours.

 

Hugs and good luck. Barton.x

 

 

Member

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

Hi Barton It has been quiet on thread whether people are away. I know what you mean about drinks I ran out of ideas. Seem to go thru phases on different drinks. It is mainly soft fuzzy drinks, ginger ale, had pineapple juice but was worried about the acid with my teeth, statrted to drink ice cold milk which has helped . Just get fed up with water. I think it is mainly the taste in your mouth and does not always quench your thirst . Sorry about your med it is so frustrating . At least we can support each other. Come on stamp those feet not too hard lol x
I have been quiet as I have not been well. I had a stiff neck for over 10 days and still need some help getting out of bed. I felt that stoned on Thursday as I was advised to double my Oramorph and also taking paracetamol and mst tablets which has helped some. Review last week not to start Cape but gave me a a small dose of vincristine to nudge platelet rate .
We had booked a night away in a posh hotel for the night on Sunday and then we were going to have a couple of nights in Somerset. Just wanted some sea air and let the kids go on the beach. My hubby thought I was short of breath on Sat/Sun but thought I would be ok. Got up yesterday and I was so out of breath just walking across the bedroom. Luckily we were only 45 mins away from our local Hospital but Ocology unit had no beds and had to go to a and e. Got a bed 13.5 hours later on Oncology . That is another story but the ado for and Consultant on a and e were brilliant I had chest x ray and ct scan to rule out a blood clot. Checked my neck and back which Onc did not do on Thursday .Think I need tests on my heart due to fast heart rate. They said HB had dropped so two units of blood transfused overnight and may need a further two. Just think Oncology are struggling with me and wonder if I need to go to another Oncology unit. Feel rally fed up as had to cancel Somerset but I might have been more unwell .
So staying in Hospital another night whilst they decide how to treat me. Trying not to worry but hubby is stressing me out as he is so worried .
I am just awkward lol always have been. Just have to face each hurdle. Sending hugs and positive vibes to you Barton and hope everyone is ok xxxx
Member

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

Hope you are OK, racer. You have been silent for nearly a week.

 

This thread has been very quiet recently.

 

I'm still off Cape at the moment due to the high Creatinine in my blood at the last test. See Onc next Thursday. Have been drinking like mad (no, not alcohol!) to try to help, but to be honest, get so sick of coffee and water. It's difficult to think of different things to drink that doesn't have sugar in it (don't take sugar in coffee or tea). Anything that flavours water has sugar (or worse, those artificial sweeteners) in it. Have thought of lemon, but the acid attacks your teeth! Tried tonic water (for night cramps really), and liked it, but when I researched what can cause high Creatinine levels, quinine came up! I'm feeling like I just can't win! Can anyone suggest anything?

 

Hugs, Barton.x

Member

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

Thank s Barton . Will try and get extra pillows. Using hot water bottles as well which eases it a bit. Keep Hoping I will be able to put some positive news on. Just keep on falling asleep when I have had painkillers . Hugs to you xxxx
Member

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

Oh racer, so sorry to hear you are suffering so much! Re sleeping in your bed - have you tried sleeping sitting up, propped up by a load of pillows? That is what I have to do when my back is really bad - it really helps. It might take a night or two to get used to, but I found it so much easier for getting in and out of bed for the loo, etc.

 

I hope you manage to sort out your bloods, etc, for the chemo next week. I know how frustrating it is being in a kind of limbo, with nothing happening. Your mind goes to all sorts of dark places. Try to stay calm, and think positive thoughts.

 

Hugs. Barton.x

Member

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

Thanks Barton yes it was frightening with the blood. I have been for oncology review today . Platelets are 20 and is concerned about them . He said it was not y platelets but the transfusion . So I had vincristine to nudge my platelets. He sad bloods were not very good and it is difficult t manage . Had a really bad week with pain in my neck and left leg /hip.. I slept on settee for 3 nights. Tried my bed last night which I slept but Could not get out of bed this morning so Hubby helped.I had to double my oramorph so felt very hungover. Onc didn't examine me. He said could be the bone marrow as capectabine as I had full dosage which has depleted platelets. So no Chemo this week and look at a reduced rate next week possibly . My ankles are very swollen too but due to anaemia . I thought I might have had a scan or x ray on my neck but Oncologist did not seem too worried. We are so frustrated at the moment as not able to do anything..Hubby is worn out due to lack of sleep . We feel perhaps certain information is being kept back ?
Hopefully going to try to go away for a couple of nights locally so kids can have a swim and I can rest.. Alsobchange of scenery . so fingers crossed everyone xxx

Hugs to everyone and hope everyone is ok xxx
Member

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

Oh racer, I'm so sorry to read about your hospital visit, and bringing up blood - that must have been very frightening. I hope they have sorted you out now, though.

 

I hope you feel better soon. Good luck with the antibiotics - hopefully they will head off any infection.

 

Hugs. Barton.x

Member

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

Hi Moijan thank you . My oh has ordered me a special pillow for between my legs to see if it helps. Anything is worth a try .
Waiting for Occupational Therapist to do home visit so hoping they have some ideas. Think painkillers are kicking in now. Just can't do anything which impacts on the family especially the kids as they get bored. So use to me running around.
Oh well another week and kids are off the following week so trying to arrange a few things .
Hugs to you all xx
Community Champion

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

Hi Racer,

 

poor thing! Glad they sorted you with antibios tho.

 

does it help to sleep with a pillow between your knees? I find that helpful. My chiro told me to do that and havent had sciatice since. But your pains poss have a different cause.

 

 

Sorry you have bern having a rotten time, love, Moijan🛌💊.    🎀

 

Member

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

Hi everyone hope you all having a good weekend. I had a trip to the Hospital yesterday as I had brought a small amount of blood up. Had blood tests and my platelets ate 19 but decided to give me another unit of platelets. Also think I am brewing an infection so on antibiotics for a week.
Cannot fault the care and they are being cautious. Review on Thursday.
Just want nice weather as in pain with my hips and have slept in a funny position and my neck is aching. So full of painkillers and hot water bottles, I don't feel like doing much at the moment. Hopefully will feel better tomorrow.
Big hugs to everyone xxx
Community Champion

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

Hi ladies, especially all those struggling at the moment. I keep an eye on this thread, having been on Cape/Xeloda in 2013 to offer any advice. I saw that Bousy is now coming off Cape, I'm sorry it hasn't worked for you but there are other treatments available. You mentioned eribulin and couldn't find a current thread. There is one, but it's hidden in the Living with Secondary BC section rather than this treatments section. Also, as it has been mispelt  (Erubulin) it wouldn't come up on any searches. I've bumped it up for you, hopefully you will find some useful info there.

Nicky X 

Ps also found this other thread in the Treatments section which I've now bumped up as well x

Member

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

Hi all, sorry to hear you are having a challenging time at the moment. It is worrying to have to change treatments/take a break. I am on a Cape break at the moment as I wait to hear whether I am eligible for an op. Phoned hospital today for scan results, but nurse said they hadn't been read and, even if they had, she wouldn't give them to me so more waiting.
Racer, stamp you feet and put your pjs on- sure delivery man will have seen far worse.
Bousy, sorry to hear your news. I have had chemos fail on me and it is a blow. Fingers crossed for your new treatment. I am sure there is a thread on eribulin as I have read posts from women who are currently on it.
Barton, hope your creatinin levels drop.

Best wishes and cyber hugs to all

George x



Member

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

Hello Bousy - you are, of course, welcome to stay with us as well! I'm not trying to get rid of you! We are all always here for you as well. Please do keep in touch.

 

Thanks for your good wishes.

 

Hugs. Barton.x

Member

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

Thanks Barton. Hope everything goes well for you. Have looked for threads but none current. Will keep on bone mets thread. 

 

Liz x

Member

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

Aah thanks Barton I will do. Hope you go on ok. I will stamp my feet for you x
Thinking of you too Liz xx
Had transfusion so need to behave self . Mind you the Nurse said that my temp was going high grrrr! It always happens when my oh is on nights. He has had to tell them he can't go in just in case I am unwell.
Just want put my pjs on but groceries are being delivered so dont want to scare the driver !
Hugs to everyone xxxx
Member

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

Hello racer, sorry to read you are still having problems with your bloods. I'm with you today - I had Onc appointment this afternoon, only to be told that my Createnin level has shot up (is usually always fairly high, but has gone up to 162 this time). I had to stay for a bag of IV fluids, and Cape has been held off for 3 weeks. I will also have to have an Ultra Sound on my kidneys before then.

 

Good luck for the Cape next week - hope your platelets improve. I expect the transfusion will make you feel better too.

 

You stamp your feet if you need to!

 

Hugs. Barton.x

Member

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

Hello Bousy, so sorry to read that Cape hasn't worked for you. Wishing you good luck with your new treatment. Sorry, I can't help with advice on Eribulin as I haven't had it, but I'm sure someone will be along shortly to help. There is probably a thread to read for advice, etc.

 

Hugs and best wishes.

Barton.x

Member

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

Hi Everyone, 

Been to see oncologist today to see if cape is working for me after 5 cycles.

Not good news I'm afraid. TM has gone up again. The tumour on my liver has grown from 21mm to 39 mm. The one on my lung only grown 1mm. Bones are quite stable with denosumab.

 

So I'm off cape and trying Faslodex hormone injections for 3 months to see if that works followed by another CT scan. If that doesn't work then going on Eribulin. Anyone any advice on eribulin?

 

Thought I would be on docataxel but they think that could have caused my perforated bowel last March.

 

Really hope this works.

 

Liz x

Member

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

Hi everyone, been for review at Hospital today . My HB is ok from blood transfusion but my platelets have dropped to 12. I knew the platelets were not going to be good but trying not to worry. So I have got to have a platelet transfusion later. Cannot start Cape this week so that will be two weeks not on med.
I feel a bit down about it as feel my options are becoming less. Just hoping that either the Cape works or there is some medicine out there that can stabilise me. Feel like stamping my feet . That might help me feel better.
Has anyone else been the same ?
Big hugs everyone xxx
Member

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

I agree, Moijan, chronic is much better to hear than palliative or some of the other adjectives that are used to describe us. Words are so important. I also like the slogan 'secondary, not second rate'.
Good to hear you are doing so well on Cape, Sandra; it does seem to be an effective chemo.

Have a good week all 😊

George x
Member

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

Hello Sandra, so glad to hear you are feeling so much better on Cape! You have had such a good result so quickly! I hope you continue to improve. I'm also glad you feel so well on the Cape, but please be prepared (lots of hand and foot moisturisers) for the possibilty of sore hands and feet. Everyone is different, so hopefully you will be OK.

 

Hugs. Barton.x

Community Champion

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

Hi Sandra,

 

well done...an excellent positive approach...was wondering about your onc, they all have their own way of dealing with cancer patients and of course.......we...with metastases, find the word palliative hard to deal with as it is avery scary wordxxx

 

 I was chatting to an onc nurse at a different centre recently and she referred to us( metastatic ladies ) as palliative during our conversation...I mentioned. that my hospital refer to our stage of illness as

'chronic cancer', which, of course, it is...and for me, I find it so helpful to think of it that way....xx 

 

Sandra, doctors dont always use the best words.....But you have every right to all the information about your care, and if you feel you need to change......then you have a right to make that choice xxx 

 

Enjoy the fact that the Cape seems to be working, Long may it continue xx

hugs, Moijanxx💚💚💚

 

Member

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

Thanks everyone. Have a good weekend xxx
Member

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

Hi, I started my first course of cap 11 days ago, and apart from feeling a bit nauseous I feel great, in fact better than I have done for a few months.  The lymph nodes in  my neck have all gone down, although i can still feel them, and I no longer feel like somebody is trying to strangle me! My breathing has improoved and i was able to join in the singing at Church last week, somthing that i had struggled to do when i was there a few weeks ago. I am amazed at how quickly the cap has worked especially as my oncologists, who is still not giving us much information, asked me if i would prefer to be passed on to the palliative care team rather than start chemo.  I am due to see him again on the 15th, which is a bit longer in between chemo than the week, and if he still doesn't provide us with the information we have asked for I am going to ask to change onc.

 

I hope everyone else who is on cap is getting on ok an i hope you have a good weekend.

 

Hugs Sandra

Community Champion

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

Yes Racer, well done...have a good weekend.......and eat/drink frequent smaller meals, if not that hungery xxx

 

Moijanxx💖😎💖

 

 

 

Member

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

Hi racer

Good news that you feel you are getting in to a routine and, you are right, these things take time. Our bodies are dealing with the illness and very strong medication; it all takes its toll. Hopefully, after the transfusion and a week off Cape things will settle for you. I am off Cape at the moment and do feel better for it. Your 'buddy' sounds like an excellent idea, one which will give you some extra time to do nice things with your children. Have a good weekend 😊

George
Member

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

Thanks Moijan and everyone. Been for review . As expected my platelets have dropped from 39 to 24 which is still not good but not as bad. They are concerned about my HB as that has dropped further. So blood transfusion tomorrow and stop cape for a week with a view to start for a week again.Oncologist thinks the Meds are doing something but small and agreed with us that we need to give it some time rather than keep moving treatments. Oncologist said usually see some results after a month. He seemed slightly happier but we know the transfusion will deplete some of the platelets by next week. So not stressing as I know these things can take time.
I have had people stopping me and saying I look well. My hubby said I look pale /yellowy . But I feel ok at mo just slightly out of breath when moving and blurred vision when looking in the distance I told Oncologistband wants me to get eye test first rather than refer me to a Specialist straightaway as it might just be glasses I need.
So review again next week . Start getting into a routine.
Just going to concentrate on other things if I can . My Daughter needs a dress so I am hoping to take her to a retail park so I haven't got to walk too far and my son has got something on at my local Church as he is in the air cadets. So that should distract me .
Hope everyone is ok and hugs xxxx
Community Champion

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

Good luck today Racer xxx

 

my this thread is getting hard to find now....!

Member

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

Thank you everyone. We will keep positive vibes going. A bit of retail therapy enjoy George. I will just try not to stress too much tomorrow . I had a better day today a local charity visited to me and are arranging a voluntary buddy who can do some ironing or minimal cleaning, or take me out for a coffee and help with hospital visits . So I am going to give it a try and see if it helps . Think it will take some stress off the family and perhaps get me moving again.
Take care everyone and hugs xxxx
Member

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

Well done, George! A woman after my own heart! An excellent excuse for new clothes.

 

Hugs. Barton.x

Member

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

Hi Barton

As a result of coffee spill, treated myself to a new jumper. Got to make a positive out of a negative😉Felt I deserved a treat after all that breathing in and holding my breath!
Thanks for good wishes

George x
Highlighted
Member

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

Just a very short message for racer, George and anyone else facing scans, results, etc. Good luck to all of you! Glad your scans are over, George, but sorry about the coffee spill! Racer, good luck with the next lot of pills!

 

Hugs to all. Barton.x

Member

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

Forgot to say, hope review goes well tomorrow, racer. Cyber positive vibes coming your way x
Member

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

Thanks for good wishes, Racer/ Carolyn. All done now, just enjoying a Costa coffee which I have managed to spill all over me. Lid wasn't on properly(Duh). Scans fine, but had trouble locating veins which became a little stressful as did nurses constantly asking me if I had thin blood. Don't need another thing to worry about😉
You are right to focus on a positive thing a day, racer, however small it might be. At the risk of sounding very sad, I light a candle every night and look back on all the nice things that have happened- hug from niece, walk in Park, etc. I also try to go for a short walk every day which does lift my mood.
Right off to train station, to get train to Stratford upon Avon and some normality.

Enjoy rest of week

George x
Member

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

Hi everyone think we need a group hug and thoughts with everyone. Thinking about you George and hope you have a nice time at Stratford.

I know what you mean about people especially if you look ok but feeling rubbish. That is what helps with the forum that we can support each other.
I am doing what was suggested trying to do something positive a day . Even if it just hoovering . My life is exciting lol. I said to my Hubby that I think because I am at home all the time I am not feeling motivated. We had lunch out yesterday which made me feel a better .
I am just hungry at mo which I think is the steroids which I am coming off hopefully. Just having slight blurred vision when I look into the distance especially writing. I wonder if I need a blood transfusion . Review tomorrow with Oncologist . Hopefully no cape next week and then restart for another week.
Hugs and love to everyone xxx
Member

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

Hi George
All the best for your scans ..gosh that's a very exciting day !!
Holding cyber hands for good results .
Carolyn xxx
Member

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

Scan day for me today, ladies. 2 in one day. Yikes. CT first then MRI. Honestly, the fun never stops. On the plus side, off to Stratford upon Avon after hospital visit to join hubby who is working there for a few days. Detailed results will be 17th Feb, but I have asked if I can phone for a general picture next week. Yikes again.

Hope SEs are starting to settle for everyone. (Can't comment as on second week off chemo)

George x

Community Champion

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

Oh and im in the 'Ratty club' too..I find the third week( week off my chemo) is worse...anything that my oh does which normally might irritate...well it really bugs me...poor chap. Im also more sensitive about things and more likely to just' come out with it'

 

anyway, I do hope you manage to get some adjustmentxx

 

Moijanxx

Community Champion

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

Yes, Bousy, was very pleased to see you, wondered how you were!

 

Barton has said it all really, ...cant add much..you might be better on a reduced dose..and or alternate weeks. Cape seems to work very well for people...Have some hope it does the trick for you...I do hope the pain is less and may even go away...horrid stuff pain....its bad enough being ill without that too! Xx

 

i had heard that rads do help with pain from bone mets.....maybe the benefits will increase with time.xx

 

hugs, Moijanxx

Member

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

Hello Bousy, that is the dose I was started on. I think I did about 7 cycles (I think) at that dose, then was reduced to 1800mg twice a day. It helped a lot. It is worth asking your Onc if you could have a slightly reduced dose.

 

Sorry you have no appetite, and are feeling ratty. I hope you get good news when you get your Tm results on the 9th.

 

Hugs. Barton.x

Member

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

Hello Moijan, I could see your original post, but as you say, it now seems to have diappeared and I can only see your attached copy! Weird! I don't think trousers can be a banned word - perhaps they meant to delete,mine where I said sh*T, but they usually just edit!

 

Hugs. Barton.x

Member

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

Hi everyone,

I know how you feel. I'm on my fifth cycle of cape and haven't felt too good all the way through it. I'm on the max dose of 2000mg twice a day. I was fine on first 4 cycles. As I have secondary in my spine, I've had a lot of pain. After radio before Christmas, this has eased so onc said to try and wean myself off morphine tablets. I've cut out morning one and now the evening one. Trying ibuprofen again. I had a CT scan last week and TM blood test. Get results on 9th to see if it's working. Last time TM was so high they wouldn't tell me results.  I'm just worried it won't work. Also have had no appetite and I get ratty. Lost quite a bit of weight.

Community Champion

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

Hi Barton, im getting a little paranoid! The post below...I posted it and then edited it, checked and saw it wasnt anywhere on the thread! Fortunately, I was able to 'go back' on my ipad and found the copy...but thats really weird...do you think maybe we arent allowed to say words like 'trousers' on the forum? 

 

Oh, its gone again...well ill jolly well paste it here----!! On this post....have we a ghost?

 

.............................................................

 

Yes Angela, Barton is right....I spoke to someone i hadnt seen for years and when I told her, she said 'well, youre still here arent you? ' as if that made everything better...!

Yes, people can be a right pain in the 'trousers' frankly.

re. Your cape dose, forgive me if Barton has already mentioned this...,

it sounds exactly the very high dose I was put on initially...they made me fill out a journal and after id had diarrhoea whilst in the library, and a session of uncontrollable vomiting.....I wrote 'life isnt worth living'!

And The onc hurried to reduce the dose AND made it one week on and one weekoff...It was so much better after that and worked well for two years..!

the other thing is, Cape was wonderful, because it was a tablet...all under my own controll and what I didnt realise at the time was that there are very few tablet chemos. that are taken by mouth...I was free to travel and do lots of stuff I cant do at present......so hopefully your onc will be able to sort a suitable dose...they always start with the largest dose to see if you can tolerate it....

lovely Barton and I have had DVTs so its really important to. Drink gallons if you can and be as mobile as you are able.

that said...they tell me excercise makes us feel better..and it does...now im having to inject myself every day with blood thinners...ive got a bit lazy again!

i really wish you well on Cape, I miss it madly xxx
Moijan💜💙💚

Member

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

When your in the middle of Cape and the side effects set in that's when I'm at my lowest and trying to explain how I'm feeling when sometimes I don't really feel like talking is so hard..it's as if I don't have right to be moody or have off days.have my first review tomorrow and then start cape again. Went off food because if taste, did like ice cream and drank bottles of lucozade. Thursday will start cycle again really hope I don't get too moody can't be doing with it but we'll see I suppose. Hugs and thanks everyone x
Community Champion

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

Yes Angela, Barton is right....I spoke to someone i hadnt seen for years and when I told her, she said 'well, youre still here arent you? ' as if that made everything better...! 

 

Yes, people can be a right pain in the 'trousers' frankly.

 

re. Your cape dose,  forgive me if Barton has already mentioned this...,

 

it sounds exactly the very high dose I was put on initially...they made me fill out a journal and after id had diarrhoea whilst in the library,  and a session of uncontrollable vomiting.....I wrote 'life isnt worth living'!

 

And The onc hurried to reduce the dose AND made it one week on and one weekoff...It was so much better after that and worked well for two years..!

 

the other thing is, Cape was wonderful, because it was a tablet...all under my own controll and what I didnt realise at the time was that there are very few tablet  chemos. that are taken by mouth...I was free to travel and do lots of stuff I cant do at present......so hopefully your onc will be able to sort a suitable dose...they always start with the largest dose to see if you can tolerate it....

 

lovely Barton and I have had DVTs so its  really important to. Drink gallons if you can and be as mobile as you are able.

 

that said...they tell me excercise makes us feel better..and it does...now im having to inject myself every day with blood thinners...ive got a bit lazy again!

 

i really wish you well on Cape, I miss it madly xxx

Moijan💜💙💚

Member

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

I know, Angela - I have a very good friend at work who has helped me immensely at times, but even she says very tactless things sometimes (one of the worst was when I first knew I had to have chemo. I said I was distressed about losing my hair and she said "I don't know why, you never did much with it anyway"!). She has witnessed all my previous treatments and how upset I get, and she still has no idea how absolutely soul destroying it is sometimes. I find one of the worst things is when people ask how I am, and I have to say I'm fine (even though I feel like sh*T) otherwise I end up crying!

 

Try to be kind to yourself.

 

Hugs. Barton.x

Member

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

Hi Barton your so right, it's all those feelings sometimes all in one day!! I'm not on any other tablets except cape and anti sickness.it doesn't sink in with some people how frustrated and low I get.dealing with breast cancer since September 2015 as it's spread to chest wall it's niw inoperable that's why I'm in Cape. It's the near constant worry) thought of it spreading that's hard to deal with.sime people don't understand how I feel mentally and physically.they say they do till a silly thoughtless remark shows they don't
Member

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

Hello Angela, sorry you are feeling so tired and angry. I told racer the other day (who said she was being moody and also wondered if it was the Cape) that I hadn't been moody, and wasn't sure if it was the Cape or "just" stress. However, I was just thinking on the way home from work today, that racer said she was on steroids (I think). I know they can affect your mood. Are you also on steroids?

 

The other reason could be that you are still trying to accept your new situation (I have had 2.5 years now to get somewhat used to the idea)- it is incredibly stressful, and no-one should punish you for feeling moody/angry/distressed/worried/sad, etc, etc, etc (you get my drift I expect). I am lucky, all my friends and relatives who know about my Secondaries have been as understanding as someone can be who hasn't been in the same situation, but I think, although it would upset me too, it is their problem, not yours. Keep telling yourself that, and hopefully you will gradually accept that you are not in the wrong, and have a perfectly good "excuse" for being angry.

 

Sorry to ramble, and I hope I have made sense!

 

Hugs and best wishes, and to all Cape Crusaders. Barton.x