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Bone mets - please join in

Chocolates
Member

Re: Bone mets - please join in

Lindy, welcome. As others have said we are a marvellous supportive bunch of ladies who with help from each other get through each day. This is a very active thread and although it is bone mets anyone is welcome so we are very pleased to welcome you in very difficult circumstances. I'm pleased the chemo is making you feel much better. I have no experience of the cold cap - hats and scarves for me - but you must do what is right for you. Remember to ask all you want, someone will be here to help. Rant, scream, shout also. Perfectly acceptable. Beware the moderator though - as an upstanding member of the community I have never been moderated but I believe Helen you have!!!!!!! Haha - and well marie needs to be monitored very closely.
Lindy, join in or just post occasionally - you are already very special by just being here.

Huge hugs,
Hxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi, and welcome Lindy. Sorry you are joining us as none of us want to be here but we make the most of it by having a giggle as the girls have said. Glad you are feeling better on your chemo already, it must be kicking the little uggers into touch. I've not used the cold cap, other than once 7 years ago but I found my hair coming out anyway so didn't continue with it after the first chemo cycle. For some it is a great success, for others not so. The one thing I did find by not using it was it greatly reduced the time I had to spend in the chemo unit! And I wasn't so cold either. Do ask any questions you may have, there is one or two liver mets threads as well as this very active Bone Mets thread so you may find answers there to any liver related questions.
I agree with Lynn that our OHs, and friends etc, have no idea how many silly laughs we have on here, along with the not so good bits as well. Keeps us, well, me, sane, I hope 😉
However what hasn't helped is chemo brain as I have now forgotten what I was going to write in reply to Belinda being called a matriarch, don't worry Belinda, it will come back to me 😉 probably in the middle of the night.
Nicky x

belinda
Member

Re: Bone mets - please join in

Ooh Lynn, hee a matriarch, I'm really as daft as a brush. Whispers, just turned 56. 🙂 x
Lynnq
Member

Re: Bone mets - please join in

Good morning everyone..
Was reading the posts earlier but didn't have time - then -.to post. OH asked me why I was laughing......he has asked in the past if it is a little but of a downer reading these forums....if only he knew the chuckles they can create.
Belinda I read your posts with awe sometimes...I see you as a matriarch, so much experience and wisdom and always there with advice both here and on other threads. May I ask your age? Really cheeky I know......also hope the transfusions do the job.

Enjoying the Poldark saga both on here and in TV!!!

Helen so good to have your cheery posts again...a bacon sandwich never did anybody any harm. One of my friends on chemo told me that she ate nothing but white bread and ham sandwiches for about a week......love peanut m & ms just back from my US trip where they do almond M & Ms brought some back but only one packet left now .
Hello to Lindy..don't be lonely..I read every day but don't always post.
Have a nice rest Chocolates....
Love to everyone else...been busy on here today which is good, but difficult to keep,up with.......
belinda
Member

Re: Bone mets - please join in

Hi Lindy, your post wasn't showing for a while, is now, but welcome and good to hear you are feeling so much better on the new chemo. I haven't tried the cold cap, I use hats and buffs and scarves. We are a supportive bunch, do keep in touch, we do go off on fun wild pursuits of fantasy sometimes on this thread as no doubt you have picked up 🙂 but it keeps us sane. X
JulieD
Community Champion

Re: Bone mets - please join in

Just a really quick one to say hello to Lindybutterfly, sorry you find yourself eligible but glad you've found us, it's a busy but supportive thread full of lovely slightly crazy women. You'll have a laugh as well as getting lots of support here. If you register for it there is a Live Chat session on Tuesday evenings 8.30-9.30.

 

Stresshead, great news!

 

Chocolates, make sure it is only two days going into work!

 

Everyone else have as good a weekend as possible xxxx

LemonDrizzle
Member

Re: Bone mets - please join in

Good grief, you've all been busy posting and it's taken a while for me to catch up.
Stresshead, that's fab news and gives us all hope.
Helen, eat what you want but are you sure you're not also with child like Marie? With all your husbands you can never be too sure!
Belinda, hope you're starting to feel stronger and have more energy.
Janette, good for you getting scan date changed. Shouldn't be a fight but glad you and hubby are uo for it.
Chocolates, enjoy your well deserved Easter holiday and after your days in school next week don't give it another thought until summer term starts.
I've probably missed some of you out so I'm sorry. Have a good day and get knitting!!!
LD x
belinda
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Re: Bone mets - please join in

Hi Nicky, glad you had a lovely time away. I will catch up with you when the new blood kicks in. 🙂
Now Helen, you have managed to make this dawn show down sound rather romantic. I have ordered up some Go Marie and Go Chocs Aprons and these will be on sale, very reasonably priced by the car boot and bouncy castle. Tickets for the hiring of chairs, colouring books and pens for the main event I will leave in your good hands.
X
Lindybutterfly
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Re: Bone mets - please join in

Hello everyone. I'm new here and not sure if I'm doing this right!
I was diagnosed with BC nearly 5 years ago and bony mets two years ago. Had paclitaxel for six months then was doing really well until a few weeks ago. I never truly recovered from the first chemo and gradually started feeling unwell since Xmas.
Was admitted as my liver was playing up and I could barely stand and am now on Epirubicin and Cyclophosphamide for 5/6 cycles and feel much better!
I've used the cold cap this time as hair loss was estimated at 50%. But hair already falling out after one session! Has anyone else tried the cold cap?
Anyway, it's nice to have found you all......it's been a very lonely process so far!
Best wishes
Lindy x
rosie53
Member

Re: Bone mets - please join in

Thanks Belinda, WOW Stresshead that is fantastic news!!!
hugs Janette x
nicky08
Community Champion

Re: Bone mets - please join in

Helen, I'm with you with the peanut M&Ms. Just the right darkness of chocolate with the bonus of a peanut in the middle! I'm not a big choccy fan but I do like these, even more than Flake which has been my fave for ever. My taste buds definitely changed since being on Cape then Tax chemo, also what perfumes etc I like. For years I've really disliked the smell of rose in perfume, although I love fresh roses, now I love it! Very odd.
Marie, how are your taste buds now you are with child? Any odd combinations? Other than the Cornish cream teas you're having.
NED is great SH and Belinda, I've never been NED either as bone mets always show up and never disappear, or so I've been told. However they of course can show as no activity or they are stable, which I'm always happy to hear.
Chocolates, hope you can recharge those batteries, it must be tough working so much when you are tired, I know it was bad enough when I worked part time when I first had my secondary dx. I don't think I could do it now though, too many aches and pains!
Hi to everyone else, hope you have a good weekend whether it's a duvet one or you are out and about.
Nicky x

2catlady
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Re: Bone mets - please join in

Lol,Belinda, we can sit at front and colour while watching. I'll bring M&Ms to share with everyone . Oh,aprons and bodices at dawn .
Hugs,Helen xxxxxx
belinda
Member

Re: Bone mets - please join in

Hi Janette, NED is no evidence of disease. I have had periods of no activity but never NED. X
I'm sorry Stresshead I missed your good, great! news too. X
Hope you have a torch under the duvet Helen, no colouring over the lines or losing M and M's. 🙂
Ladies I hope we are not going to come to blows over Mr Poldark. (Putting on my shocked face.) No aprons at dawn or something similar. (But let me know if there is so I can watch! :- D ) x
rosie53
Member

Re: Bone mets - please join in

What does NED mean ladies?? From what i have read it is something good to hear.
Janette x
2catlady
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Re: Bone mets - please join in

Oh,chocolate,I can't believe how a certain lady has flung her self at MrP tut tut. And with child,I'm shocked! And you got him an apron too. Oh Marie,what can I say lol xxx

Janette,I do think the mind is the worst SE of this disease and WHY don't Oncs,BCN,realise what it does to our heads,moods,anxiety and stress when we are waiting. The thing is my onc said results are always ready in an hour to read! A phone call?? He says he just rings radiography and they can say what's news. I had results of SCC in about 30 mins and had CT arranged,rads arranged within 24 hours! I'll add a big Grrrrrrrrrrr and angry eyes .

Oh,SH,so sorry I missed news,yipppppeeeeeeee! To the NED we all lust over. You go girl. That's fantastic news xxxxxxxxxxxxxxxxx

Tracy,please sign in im very worried xxxxxxxx
Well.im having a duvet day colouring and it's only 22mins until m&Ms arrive yippppeeeeee,huge hugs,Helen xxxxxxxxxx
Lindybutterfly
Member

Re: Bone mets - please join in

Hello everyone. I'm new here and not sure if I'm doing this right!
I was diagnosed with BC nearly 5 years ago and bony mets two years ago. Had paclitaxel for six months then was doing really well until a few weeks ago. I never truly recovered from the first chemo and gradually started feeling unwell since Xmas.
Was admitted as my liver was playing up and I could barely stand and am now on Epirubicin and Cyclophosphamide for 5/6 cycles and feel much better!
I've used the cold cap this time as hair loss was estimated at 50%. But hair already falling out after one session! Has anyone else tried the cold cap?
Anyway, it's nice to have found you all......it's been a very lonely process so far!
Best wishes
Lindy x
belinda
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Re: Bone mets - please join in

Hi FF, good luck with your scan. X
Do let me know how it goes. Everything crossed for you. X
belinda
Member

Re: Bone mets - please join in

Good Morning Ladies, thank you for the kind wishes for my transfusion. I will probably have more whilst on this chemo, so looking forward to feeling more myself. Helen what a great breakfast!
Must admit Mr New Poldark doesn't do it for me, perhaps after my transfusion. 🙂
Will see if I can find some stretchy wool and a knitting pattern for a maternity corset Marie.
X
Marie123
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Re: Bone mets - please join in

Hello Lovely Ladies,

I do agree that this illness is as much to do with our minds as it our bodies. I was a bit messed about this week with appointments and it does make me quite anxious. To everyone waiting for results this week I am on full positive vibes. To those having a difficult time, please be kind to yourselves and have the odd bacon sandwich. Marie

 

Poldark Update.

Please remember ladies that I am now with child, so no more lusting after Ross. Thank you for all who are cyber knitiing ; it is very kind of you. My corset is getting a little tight , not sure if it is the cyber pregnancy or the delicious Cornish cream teas. Ross sends his regards

love Marie Poldark.

 

.

 

 

Chocolates
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Re: Bone mets - please join in

Morning ladies, I've finished - such a relief - apart from two days in next week I've got a whole two weeks off. Really need to recharge my batteries ready for the summer term. I'm just about recovering from the shock of marie taking Mr poldark off me and marrying him. That was a real body blow. I'd even bought him an apron - that's how serious I was!!!

Anyway Belinda, I hope your blood transfusion picks you up a bit and you soon have more energy. Mavis, I hope you have a good trip round the uk. You've had a tough time lately so a good rest and change of scenery will hopefully do you good. Stress head - what fantastic news - NED. We long to hear that news and when we get it it can unsettle us. I was the same. Give it some time and your confidence will come back with this new result and hopefully you will relax and begin to enjoy your new 'normal'. Haha - macie your post made me laugh. You're never too old - so don't give up although don't tell marie about it - she'll be off and marry him before you know it!! I think yure right to ask for your break from Cape - I have no experience of it myself but it is about quality of life. You know your body so you say what you want.
Nicky - hope treatment went well. Bit mis here this morning but may brighten up. Janette, you go girl. Why do they never tell us the truth about appts etc. we need to trust these people but if they don't tell us about simple things like moving appts how are we meant to trust them with our results etc. anyway well done you and hubby for getting scan and results brought forward. Fingers crossed for you now xx
Helen, you eat what you want when you want with a wig on also - you only live once!!! Where was my support over Poldark - I think you abandoned me really quickly. Is there something you're not telling me - are you in on it with marie? Like I said previously I had bought him an apron - that's how serious I was. Right I'm off to cry again now.

Huge hugs everyone,
Hxxxx
rosie53
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Re: Bone mets - please join in

Hey Helen, must have been posting at the same time.
You go girl, you eat what ever takes your fancy special lady!! And i bet you look fab in your wig, hey you could have a few different ones for each "hubby" he he 🙂
hugs Janette x x
rosie53
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Re: Bone mets - please join in

Morning ladies, hope everyone is ok, sending hugs to those who are struggling at the moment with SE's etc.
Well after both my Onc and bcn both said they would look into bringing my bone scan forward i had still not got a new appt so i decided to ring the scan dept myself and guess what??....i got it brought forward by 2wks!! Thanks for nothing bcn and onc grrr!! Then my hubby took on the challenge of getting my onc appt for the results brought forward and a war of words she has agreed to see my a wk earlier. Why is everything such hard work for us? Do they not understand what us ladies are going through and what this nasty disease does to our heads, its not just the physical side of it its also the "mind games" it plays with us!!
Rant over....well i caught a glimps of Poldark on Gogglebox last night WOW!!! I think we should all be nice and share him, hes young enough with plenty of stamina 🙂
hugs to all Janette x x
2catlady
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Re: Bone mets - please join in

Good morning lovely ladies xxxxx

Belinda,I hope your tiredness goes,it is very debilitating ,rest and yes,eat Easter eggs xxxxxxx

My diet is bran flakes,peanut M&Ms,strawberry milk Horlicks and omg!!!!! A bacon sandwich ( I've been a veggie for over 30years!!! Even chemo nurse was shocked) well they are only things I fancy so I'm listening to body lol! I've even ordered myself an m&Ms Easter egg and three mini packets of m&Ms on Sainsburys delivery today! Veg,fruit,what's that lol

Had treatment yesterday. Didn't see the doctor I had a review with at 1:00 as nobody knew who it was or why!! Not that I was bothered,I just wanted chemo.

Got wig,yikes. But I must say there was an Elsa wig in window!!!! Plat and everything. Oh,I was sooooo tempted good job level headed sister was with me,grrrrrrrr. All I'm saying is I'm not sure ,still look,feel odd in it. But I think it's better than the Chewbacker look in the morning with my hair.

Macie,oops! Well I say your as young as the man you feel( sorry mods,in a naughty mood)

Chris xxxxxxxxxxx

Tracy,how are you,worried you have been quiet xxxxx

Bev,always in my thoughts xxxxxx

A few ladies are going AWOL please just post to say you are all okay. Us mother hens worry xxxxxxx

Glad,cap going well mavis. Get that bag packed and get a GB road trip in. All stops must be nice coffee shops with cake in though.xxxxxxx

Well,I'll go as butler( hubby1 ) is making cuppa ,not Horlicks grrr or m&Ms double grrrrrrr,bran flakes and tea. I'll save my other healthy food for later lol.
Massive hugs,Helen xxxxxxxxxxxx
funnyface
Community Champion

Re: Bone mets - please join in

Belinda, Sorry you are so tired and need a transfusion. Hope it puts some pep back in you. I have a CT on April 7th, very short of breath. Not sure if chemo failed or is causing it.  FF

sivam
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Re: Bone mets - please join in

Hi Everyone, been following the posts here, but felt I had nothing to add but a boring Hello. Notice Macie from your post re Cape, there has been many comments.I am now on Cape after Taxol and Everolimus caused too many side effects.I am experiencing less side effects and now putting on weight again Deo Gratias, initial Cape dose was too high and was rested for a few weeks now on 1000mg a day for 14 days and then 1 week off, my last scan showed everything stable and cancer markers are down, also following Keto Diet for Cancer with Patricia Daly Nutritionist.

Because of grand age of 80 and Secondaries having trouble getting insurance for abroad,the cost is dearer than the Holiday, so holidays un UK will have to suffice.

Helen lovely to hear life is improving,Bev you will cope with your new treatment I am sure

Love and Light to you all you are amazing with your support xx

Macie40
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Re: Bone mets - please join in

Hi ladies I think cat lady and still here you might me getting a bit mixed up with Marie and me Macie I do have a good laugh at the humour in all the posting and love it but at 74 years old poldarks baby might be a step to far LOL but please carry on with the story.
Thank you ladies for the comments on a break from Cape I am definitely going to ask for one when I see the onco on Tuesday also my breathing always seems worse on my week off has any one else experienced this.
Love Macie x x x

stresshead
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Re: Bone mets - please join in

Dearest ladies..hope no one is suffering too much at the moment. Just wanted to share a bit of good news for a change...

went for scan results yesterrday and they hadnt been passed on to my oncologist, which tipped me over the edge before i'd even seen him. He got the report faxed over but no scan pics. He told me there was NED and that i was in remission. He was sure the lumps i can see/feel are scar tissue and is seeing me again in 3 months so it seems the docetaxol/cape worked. I asked if i would be having another scan and he said no for the cancer but would do a lung scan for the pulmonary embolism. Whilst i am really pleased the caution part of my brain is still bothered about the fact that i am now relying solely on letrozole: i am trying hard to look on the positive side and enjoy this time.

Sending love to those who are expecting results.xx

Stillhere
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Macie!! I was so busy trying to offer advice about capecitabine that I didn't notice you sneaking into Mr Poldark's bed chamber!! As for the shotgun wedding, you must be a brazen hussy!! Bother, why didn't I think of doing that??! Better join cat lady making bootees... Hear there are twins in his family....no, make that triplets!!
Thinking of so many of you, wishing you courage, just a light post xxx
nicky08
Community Champion

Re: Bone mets - please join in

Hey, frivolity is good for us! Don't apologise. Maybe we need to resurrect, or search, for the 'Secondary BC has made me go Gormless' thread! However I don't condone the aggression surrounding Mr P! Obviously he is now married to Marie, gosh, she snuck in quickly there didn't she? And a baby on the way! I did have a chuckle the other day when Belinda mentioned Warleggen, that name brought back the memories of the 70s series if Poldark when I'm sure I was bethrothed to Mr Ellis/Ross Poldark. However since then I have moved on and am still waiting for Mr Pitt (the Brad version not the Elder) to get in touch!
Sorry to hear about the extreme tiredness, Belinda but hope the transfusion picks you up as it seems to do for everyone that has to have one. Easter eggs sound like a good way to help 🙂
Hi to everyone else, hoping treatments are OK and you have a good weekend. I'm currently hooked up for my 3 weekly Herceptin and Perjeta and annoyed I'm not outside in the sunshine however chilly it may be.
Take care
Nicky x

belinda
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Re: Bone mets - please join in

Did you ever have your transfusion Helen? I am having one next Tuesday and hope I get some little break from this crazy tiredness. I'm ok for chemo today but the wobbly legs, am I about to faint feeling!
Have a good as weekend as you can everyone....break out the Easter Eggs, wear your best Poldarkian bonnets and let's deck the halls with daffodils. X
2catlady
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Re: Bone mets - please join in

Good morning lovely ladies. Thinking of you all at this difficult time.

Sheila and Tracy how are you both very worried xxxxxxx

Sorry,I'm being a bit frivolous on thread it keeps me sane with all our not good news at the moment xxxx

I'm off to look at another wig which has come in,others still in London,grrrrr. She says blonde bobs most popular!! Well stock more then grrrrrr.
Off to see doc about how rads are working. Still very wobbly on feet. I look drunk without the booze,im a cheap date lol.
Then chemo. Let's hope I don't have to wait 4:5hours this time for a 5min IV. I was supposed to get it at 2:00 last time,but at 5:15 it was still in pharmacy of another hospital and then being driven through rush hour to me grrrrrrr but at least I got it.

Well,I'm off to knit booties from my hair for Macies and Mr Ps baby ,needs must.
Huge hugs and you are all in my thoughts.Helen xxxxxxx

Chris,huge hugs to you xxxxxxxxxxxxx
LemonDrizzle
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Re: Bone mets - please join in

Good afternoon ladies
Hoping everything is going to plan Sheila and you're not too tired.
Desi, sorry read that you've not been well - hoping you get your strength back soon and you can start the reduced dose.
Helen, I used to spend ages just pulling my hair out until I was brave enough to hack it off with a pair of rubbish scissors. Hubby didn't know whether to laugh or cry when he saw the state of my hair as he was still treading on eggshells not wanting to upset me. Anyway we both laughed hysterically (must have been releasing the stress) and he eventually was able to sort it out with his hair clippers. Thought I'd be much more upset than I was, but hey ho it's only hair I decided. Bet you'll look very glam in your new wig as long as you learn how to put it on properly!
Hoping everyone is having as good a day as you can
LD x
2catlady
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Oh,my Macie is now having Mr Ps baby and is married!!! How did this happen ?? Chocolate and Macie were on naughty step writing lines!! Oh,I'm in shock. Naughty steps must have a different meaning now. Oh,I need my bodice loosened by a hubby I'm having a faint lol.

Well I must go and lie down and be fanned after my shock 🙀🙀🙀🙀
2catlady
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Re: Bone mets - please join in

Thanks Belinda xxxx. Yes,my norweigian heritage doesn't suit brown. I did try my sisters wig on. She burst out laughing as I'd put it on backwards!! Oh there's no hope for me lol.
I may chop ones I've got wig but need the security blanket of wig first. I have some hats from the Maggies centre which my sister swears by as so soft and comfy .
Huge hugs to you and everyone having treatment xxxxxx

Tracy,how are you doing? Xxxxxxx

Hugs to all.helen xxxxxx
belinda
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Re: Bone mets - please join in

Hi everyone, good luck to everyone with appointments and treatments this week.
Hi Sheila hope all is going as well as can be.
I'm waiting to see how anaemic I am, will hear today, good old Paclitaxel, have been on an iron boosting crazy food binge but will take a transfusion if bloods drop further. Helen I found it better clipping my hair off than putting up with the hair dropping everywhere, some do, some don't. I would send you my wig, I don't wear it but it's chocolate brown. I actually bought some vintage scarves online, think the Queen, Hilda Ogden, 🙂 but mostly wear Buffs. Make sure Frozen Fan you get one of the hubbies to take you to the new Cinderella with the added new Frozen short film!
XXX
2catlady
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Good morning lovely ladies xxxx
All our love and positive thoughts to our friends struggling at the moment xxxxxxxxxxx

Now,chocolate and Macie,I will have to put you on the naughty step if you can't share. I also want 100 lines written "I must not go into over lust over Mr P" .There' plenty of him to go around!! If you play nice MrHollywood will bring you some
Buttered hot cross buns.
Yes,the biggest laugh was when we saw onc yesterday he said sorry he hadn't been to see my on ward but he was away all last week. So I reckon the man we talked too in cafe was the real MrVirgin atlantic and not my onc. This was even funnier as he said he'd just found out I was in hospital!! Strange how my sisters onc said ive just been to talk with your onc as you have clinic appointment today and he said he'll pop up to see you!!!! That was first week!Omg,I'm sure he's just a balmy old man pretending to be a doctor and prowling the corridors lol. Or it could just be me and I attract nutters!!!

Well hair is coming out in huge chunks at moment 😭 apparently blonde bobs are their most popular range and they don't have any in!! So I reckon it's fluffy big hair one as don't think I can wait much longer. It looks like I've had afghan hound in bed with me! I'm looking like Olaf and not Elsa at moment lol
Well wonderful ladies I'll leave you and catch up later.
Massive hugs,Helen xxxxxxxxxxxx
Chocolates
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Evening ladies - just checking in for a brief catch up. Bev and Sheila - hope you are ok. You have both been on my mind all week. Huge hugs ladies xxx
Lynn - sounds like you had a thoroughly fantastic time. So so pleased for you. Have enjoyed reading about your hols - it's a good pick me up so thank you for sharing. Hope the laundry is not too bad and you are resting inbetween.
Helen, marie started it - it is her fault. I haven't done anything I promise. He is mine. Marie is just being horrible to me!!!!!!!!! I'm completely innocent. Seriously hope today went ok - and hope the pain is gradually reducing over the days and you are getting a bit more mobile. Lol about onc off again on holiday - blimey I think being an onc is his second job!!! I wouldn't mind if he actually did some work and looked after his patients. Anyway, let us know when you can how you got on. Lovely to have you back with us. Keep resting and look after yourself.
Welcome to our newbies - it's lovely to have you here. This group is amazing and we are all here for each other. I can't do this journey without these ladies.
Hope everyone is doing ok. Huge hugs - roll on Friday evening - a two week break. Can't wait.
Huge hugs,
Hxxx
Stillhere
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Hallo Macie, I have been on Cape for about 21 months now and it has reduced a 2.5cm hilar lymph node lump to NED and kept a 1cm axillary lump stable- cant have surgery on the latter because I've already had 5 or 6.
I have kept going with minimal SEs because my Oncs have said 1 week on, 1 week off, their research has shown its as effective (Marsden in Sutton) but this may be because of my particular case. It shows that breaks seem to be OK and Oncs wouldn't allow it if it was detrimental. Hope that this helps xx
Barton
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Hello Macie, I'm on Cap since about last July.  I had 7 cycles of 4000mg per day, but found I had terrible breathlessness and tiredness that had gradually built up, so Onc gave me a 6 week break (which ended up being 8 weeks, as the 6 weeks started at the end of my rest week, and another week at the end because they didn't know if I wanted to go back on it or not ("stable" result from CT scan following break), so hadn't ordered in tablets for me.  It did me a huge amount of good - and I came back on a slightly lower dose of 3600mg per day, which is working well so far (although tiredness is gradually building again).  Hands and feet no-where near as bad as first 7 cycles, and am now on the last 2 days of tablets on my 10th cycle.  Feel free to join us on the Xeloda/Capecitabine thread on the Treatments & Medical Issues board with any other queries, etc.  Hugs, Barton.x

Glo
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Hi Macie,
I am about to start capecitabine next Monday. My onc has told me that..
People who take capecitabine who respond well without SEs do well (obviously!)
People who respond well but get SEs and take a break to let their bodies recover do equally as well
People who get SEs and soldier on through them don't do as well (I presume because it does their overall health no good!)
I'm happy with that I will go with when I start next week!
Hopefully you will take a break, recover from the SEs and the resume.
Good luck
Glo

Bevlaar
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Taking all your warm wishes and thoughts with me today ladies 💖💖💖
Lynnq
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Hello again everyone. Lovely sunny day here in Yorkshire.
Glad to see you posting Helen...hope all goes well with your ONC appt today.

Macie i have not had Cape but one of the ladies in my SBCC has been on it for 4 and a half years. She has breaks now and then - the most recent to give her hands a rest.....but I know she has also had an extra week off occasionally for holidays. She also went into a reduced dose for a while and then gradually built it up again....new lady came last time who asked her lots of questions about it

Funnyface thoroughly enjoyed the trip...Graceland was a highlight, but OH spent hours wandering around the naval park in Mobile....there was a nice coffee shop for me to wait for him tho! Like you I was glad to be home but not cos I hadn't enjoyed it.
Hello Clare....lots of info, help and encouragement on here.

Hope Bev is feeling our warm wishes and that her team are on the ball

Good wishes to everyone else with scans, tests, results due....and also for everyone coping with this.
I am seeing ONC tomorrow for 3 monthly consultation, then Zometa infusion
rosie53
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Re: Bone mets - please join in

Morning ladies, a lovely day here in Manchester.
Hope everyone is doing ok, Helen nice to read your posts again....they always bring a smile to my face 🙂
Take care ladies hugs Janette x x
2catlady
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Re: Bone mets - please join in

Good morning lovely ladies. I think we are all still reeling from the shock of our Lulu leaving us. God I hate this disease so much. Our hearts and thoughts are with our wonderful Chris too xxxxxxx

Bev,sending you huge hugs and we are holding your hand and are with you.xxxxx

Tracy,shocked to hear you have been ill. Again we are all here for you and hopefully you'll get cap very soon xxxxx

Lynn,wow! You go girl great holiday xxxx

Now,ladies duelling over Mr Poldark😡 do I have to get my angry eyes out. 😠 we must learn to share. My hubbies will fill in gaps while waiting. All have ehmmmm skills to keep you "amused" while waiting. Not long now for half term chocolate xxxx

Lindyloo,lovely to hear from you xxxxxx a bit of hail and snow today in NE.sunbathing weather yesterday lol,Good old NE.xxxxxx

Belinda,I'll give my onc you "offerings " of his Bob dylan records today haaaa haaaa ( evil laugh) I'm off to see him ad hoc today because he's not doing clinic tomorrow,oh yes he's jetting of on cousins red plane for another holiday!! Now I'm taking bets to see if he actually turns up or remembers he's seeing me today,lol not good odds I think!!

I'm tying to catch up with threads but it's taking a while,as sooo tired at moment ( well I am until I see onc then I'm fighting fit lol)

Clare,welcome to our wonderful ,mad,group of the most fantastic supportive ladies you'll "meet" we are like a huge family always supporting each other through tough and good times.xxxxxx

Huge hugs to everyone,Helen xxxxx
funnyface
Community Champion

Re: Bone mets - please join in

I'm sorry to hear of Lulu' s passing. This disease never stops breaking our hearts! Saddened, Funnyface

funnyface
Community Champion

Re: Bone mets - please join in

Lynnq, We did a big tour back in October. We did Indianapolis, Indiana..Albuquerque, New Mexico...Santa Fe New Mexico, ....Carl's Bad Caverns, Bid Bend Park, and the Alamo in Texas, then to New Orleans, Memphis, and Nashville. Hubby drove all if it. We saw a lot of beautiful country, but was glad to get home. My favorites were Carl's Bad Cavern, jeep tour of Big Bend, hot air balloon festival in Albuquerque (500 balloons), and air boat ride in the swamps of New Orleans. I hope you had a good time Lynqq! Funnyface

Macie40
Member

Re: Bone mets - please join in

Hello ladies I have been on Capecitabine for over a year now 2 weeks on and 1 week off with out a break,but I now feel all the s/e are catching up on me so I am thinking of asking for a break now. Can Ilease have some feed back from anyone that has had a break and for how long,and what effects does it have on the cancer if it is already having quite good results.
I hope everyone's results and treatments go well this week love Macie x x x

bertie1
Member

Re: Bone mets - please join in

Desi-2 sorry to hear you've not been well on Cape,hopefully they will reduce it and maybe you will tolerate it better.Im on a reduced dose and find se manageable.Hope you're feeling better Helen and not in so much pain from Rads.hope everyone else is doing ok
Take care all
Kaye xxx
rosie53
Member

Re: Bone mets - please join in

Oops Clare i didnt read your post properly, thought you were asking what NE meant!!
Janette x x
rosie53
Member

Re: Bone mets - please join in

Hi Lynn, sounds like you had fab time on trip to the US, i would love to do what you have done!!
Hi Clare, welcome to the forum, sorry you have had to join us but we are a friendly bunch and will help you with any questions etc, i don't know what NE means either though but i am sure one of the other ladies will tell you.
Hugs Janette x x