Bone mets - please join in

[scratch]

Carolyn .il probably still tune in next week..its like a stupid addiction
..and there's nowt else on tv ...x

[Carolyn52]

Sharon

I'm afraid that x factor is my guilty secret ..moan about it but somehow still tune in!!
Sharon was certainly on a high ..think I need a pint of what she was on.
It's all very much the same ..serious acts and novelty ones !! Probably see as good on a Saturday night doing karaoke at the local pub.
Hope u feeling a bit better.
Xxxx

[scratch]

Carolyn wasn't x factor rubbish last nite..theres a couple of good singers
.when I watched boot camp there was some good ones they have made bad choices..and was Sharon drunk❓ ..haha...

[HelenAquarius]

Hi all... quick mention about the Bristol meet up on 15th.... I've posted in the Meet-Ups group but wanted to give a last shout out incase someone has not heard about it... all are welcome of course :-))

Love to all and hope you are having a good weekend. Xxxxx

[Carolyn52]

Hiya Sharon.
I will b totally honest to you ..I don't think you can tolerate chemo on Monday either from what you are posting ..maybe a extra weeks rest from it will help you gain some strength but of course I'm not a medical expert or anything and its just my opinion.
Enjoy strictly come dancing if you are at home in Pjs. .I'm loving all the sparkle !!
Loads of hugs xxx

[scratch]

Also I don't feel well enough for chemo
We will attend clinic monday but I seriously have declined since I started this chemo so it cant possibly see how it's doing anything

So wait for Monday now 😻my husband agrees..x

[Carolyn52]

Ha ha FF ..what is a chocolate tootsie pop? We will have to include one of those on the menu in the cyber cafe just for you.
One step ahead of you ..got new slippers now ..so nice snuggly toes. My old ones just got smelly !!
Sharon
Visitors and hosp visits are tiring so have a nice quiet time weekend ..hopefully you will feel a bit better ..don't know anything about drains but sounds good as when fluid builds up ..you can just turn the tap on ..get rid of and a nice flat tum again!!!
Xxx

[scratch]

Hi all no I'm kind of into the unknown at moment.had chat about permanent drain weds.had bloods done yesterday and chemo is due on Monday.I dont know how long theyl leave me waddling around with big tummy.find out more Monday...i suppose it will be just something like a chemo line it doesn't drain out until you turn it
Yuk❕ ..i can still change my mind..just sitting around today had two hospital visits and lots visitors.having a quiete day.x love to everyone.x😻

[funnyface]

Hi Avrelia, Maybe sucking on a hard candy would help. Yes it is sugar and calories but not as many as other choices. I'm particularly fond of red hot cinnamon kind or a chocolate tootsie pop! 

Carolyn, I think you and I are the PJ queens. I need a new pair of slippers mine look like a rat was chewing on them! When I'm cold I throw a big old baggie hoody sweat shirt over top! I look like a bag lady!! It's comfy though!

Sharon, You are in my thoughts! FF

[stresshead]

Sharon, hope you are feeling better..i assume you have had the drain fitted??

Avrelia, sorry to hear yoiu have not been feeling so good...feel free to have a rant whenever you want, you wont 'get us down'...

Carolyn, i'm with you..it has got colder quickly but its a brilliant excuse to snuggle up on sofa in pj's any time of day/night...not that we need an excuse.

I agree it does make you 'pig out' more but hey ho! I have put abot 2 stone on since my primary diagnosis..i dont like it but as long as i'm ok its not really high on my priority list..my answer is just buy bigger sized clothes and dont look at the label. The worst thing for me is being very obviously 'deformed' up top. One reconstructed boob is fine, the other has been eaten away and is just a hard lump...looks like something from a horror film: thats the worst thing about skin mets, visible and disfiguring and very limiting with clothes choices..gets you very down sometimes but just have to get on with it...again much easier at this time of year when its baggy jumpers and not skimpy tops!!

Loveto all. xx

[Barton]

Hello Avrelia, sorry to read you aren't feeling brilliant (if you ask me, it is the cleaning making you feel bad! ).

As for the hunger and eating - I get so hungry on Cape, and have put on quite a lot of weight since last Christmas. Not sure how I'm going to shift it!

Sharon - sorry I haven't replied to you before now - however, everyone else has already said anything I could say, only better than I could say it! Hope you are feeling a little better now.

Hugs to all. Barton.x

[Carolyn52]

Hello avrelia
Sorry you are not feeling too well but unfortunately chemo is accumulated and gets a bit harder every cycle. The hunger is not a normal feeling but a must do !!
When I had FEC years ago my sister called me 'gizmo" from the film gremlins as when we shopped ..it was cafe to cafe rather than shoe or clothes shopping.
It will get better when u finish and get back to normal again and I found the extra stone I gainned fell off quickly.
So in the meantime if u fancy a cake, biscuit or pasty ..enjoy !!!
Hugs xxxx

[avrelia]

Hi Carolyn and everyone,

Yes, it is getting colder although I should admit that I am having my socks and swetashirts since last week, today feeels a bit warm but may be because I am trying to clean around:)

Have not been so well recently, although as compared to you Sharon, I cannot say I am bad at all. Still I admire the way you are coping, I do not think I will be that strong, but you never know with cancer....

Anyway head up, do not want my bad mood to be passed to anyone. 

I have been eating too much recently, do not know why, to be honest, when I started feeling sick after chemo, apart from the antisickness tablets, food was making me feel better. I need to find something may be like a sweet a mint in order to stop eating that much, since gaining weight is not good for that bloody thing. And may be I will have to move more although that type of weather only makes me want stay in fron of Telly.....

Hope you are all fine ladies

[Carolyn52]

Good morning ladies
Is it just me or has the weather just changed to cold overnight recently ?
Gone from flip flops to socks and boots and from tee shirts to sweat shirts just like that.
Heating on too...brrrr
Sorry that some of you arnt too well but strictly dancing and x factor tonight plus a family bag of twirls and a g and t ...that's me sorted with pjs and fluffy slippers .
Xxxxx

[JoolsW]

Hi Helen

i missed your post the other day I've been on hols. It was so nice to meet you a couple of weeks back, I hope all goes well with your MRI sending you a hug.

julia x 

[stresshead]

Sharon, sorry to hear you are having problems again...as the others have said mayne a drain will be the answer..not nice for you but we all know the lengths we would go to to halt this b****y disease. Fingers crossed that the eribulin takes effect quickly.x

Marion, was very interested to read the article on oestrogen kickstarting neg cancer to respond to hormone treatments again. I have copied it to show my onc.

Helen, good luck with the mri..and to everyone else having a rough time and/or waiting for scans/results. xx

[Moijan]

Helen, was wondering how you are!!

am off to chemo soon. Is the date still 22nd or 15th?

Talk soon, Moijanxxx

[HelenAquarius]

Sharon - echo the thoughts from the others ladies..  hoping the Eribulin is having the desired effect.

Fingers crossed cycle 3 goes ok.. I'm starting cycle 3 on Tuesday. 

Hope you have a restful few days ready for mon. 

Helen xxxxhugsxxx

[Moijan]

Hi Sharon, sorry for late response, was at the hosp today(onc day) sems to take a lot out of me! Lovely onc tho.

had bad night last night as partner had what seems to have been another kidney stone! So not much slerp. But hes getter today.

the drain sounds as if it could be helpful. Fingers crossed that Erib does some magic. Keep us posted

Moijanxxx

[Carolyn52]

Hello Sharon 

Sorry to hear the news but maybe having a permanent drain will ease the problems and fingers crossed for the next chemo.. hope it kicks in and starts giving the c some Welly. 

We are all here for you.. so rant and rave as much as you like day or night. 

Sending loads of hugs x

[Carolyn52]

Hello Sharon 

Sorry to hear the news but maybe having a permanent drain will ease the problems and fingers crossed for the next chemo.. hope it kicks in and starts giving the c some Welly. 

We are all here for you.. so rant and rave as much as you like day or night. 

Sending loads of hugs 

Xxxxxxc

[scratch]

Hi just an update the c is slowing down my bowel..thats why I get tummy problems.I have put myself down for a permanent drain.she said I can change my mind at any time..makes me cringe but makes sense rather than keep having drain ops
The district nurse will drain it whenever it swells up or I can do it myself😁..anyway if chemo doesn't work there's no more treatments for me as bowel may shut down...so left in limbo.no three chemo Monday..take care Sharon.😻 x

[Marirose]

Hello everyone I want to echo what Julie has said to Sharon Helen Nicky.

Sharon I do hope you get some answers I have been reading your posts on Eribulin thread and my heart really goes out to you stay strong 

Love and (((hugs))) xxx

[JulieD]

Sharon, good luck today, I  hope the specialist can help you and give you some answers today.

Helen, sorry to hear you've got to have more scans and hope you don't have to wait too long for results. Nicky fingers crossed for you too.

Sending love and strength to all readers/posters, specially those going through a rough time or having scans/waiting for results xx

[nicky08]

Hi Helen

Just seen you post - that's a b*gger isnt it?  Hope it's nothing extra to worry about an you know where I am if you want to rant even more!

Nicky x

ps fingers crossed for you - and I have my CT on Friday so I'm crossing them for me as well!

[Carolyn52]

Oh Helen
All the very best for your Mri next week ..hopefully you can have your own music ..something loud you can sing along with maybe ....
The ladies here amaze me too with their strength and fight .
Hugs xxxx

[helen44]

Just wanted to say thank you to all you lovely ladies on here - you keep me sane. I don't post very often but I read every day and it never ceases to amaze me how much we all go through with this b****y disease and the resilience we show. I am currently waiting for an MRI next week following a CT which showed another suspicious area in liver (bone & liver mets dx) - coming on the forum is my best support because you know what I am feeling like. Thank you xxx

[rosie53]

Morning Sharon, hope you get something sorted today, sorry your having such a rough ride lately.
Hugs Janette xx

[funnyface]

 Sharon, Thinking of you and hoping for some comfort for you! I'm sorry this keeps  happening to you. FF

[Carolyn52]

Hiya sharon

Sorry you are getting troubles again... hope doc can offer some help and better treatment. I will be thinking of you tomorrow.

Hugs xxxxxx

[Moijan]

Hi Sharon,

Sorry to hear about your tummy swelling up again. Yes, good to get seen by a doctor. See what she says. 

You must feel very worried. Do keep. Us up to date with how you are.

love and hugs, Moijanxx

[scratch]

I'm going to hospital tomorrow to see specialist Dr..my tummy is swelling up again so I dont think erubulin is working for me
.update tomorrow ❤😻

[scratch]

Carolyn I hate pink October..i try not to read it all..especially when I was breast aware years ago and my bc consultant was adamant for eight months and four visits I didn't have it...feel like cutting out the info in newspaper to send to her xx

[rosie53]

Yes Carolyn, everything in moderation is the way to go, sometimes I get fed up of constantly being made to feel guilty about our lifestyle by the media! The majority of people's cancers or just down to pure bad luck!
Hugs Janette xx

[MarionP]

Evening ladies. Re ER status changing, I don't want to raise false hopes but I came across this old article (via Inspire) where a small study in the States found that doses of oestrogen could get cancer responding to hormone treatment again in 30% of cases. I've never seen or heard anythihg about it here - has anyone else?

https://source.wustl.edu/2009/08/lowdose-estrogen-shown-safe-and-effective-for-metastatic-breast-can...

[Carolyn52]

Yes Jeanette ..it's a knock on effect and catch 22 situation with everything that we try to do to be healthy.
Then in the same newspaper they are on about aluminium in deodorants causing bc etc.
Phew ..I'm just going to do everything in moderation ...and try to enjoy life !!
Hugs xx

[rosie53]

Hi Carolyn, thanks for the info. I've looked into this before, my daughter is a dental nurse /oral health advisor and I questioned her about it, although the acidity isn't the best for our teeth as long as you wait an hour before brushing or use mouthwash straight after the affects are less harmful. I've been doing the lemon water at least 3 years now and had no problems. Why is nothing ever simple, one thing counteracts something else doesn't it!
Hugs Janette xx

[stresshead]

Sharon, just catching up on this thread and noticed your post. I can well understand how scared you feel. I have got through most available chemo's in a short space of time and no on can tell me whats next. I changed from ER+ to ER- and was told this never reverses..interesting to ee Moijans post where she has been told that treatments can alter cancer cells  back to positive...lets hope her onc is right.

I also read with intetest abpit oxygen killing the dreaded cells: i know one of our ladies (sorry cant remember without searching back...sorry) improved as she has an oxygen tent (or something similar) and when i was on oxygen folowing pleural effusion, the appearnce of my skin mets definitely improved. It begs the question of why cant we have extra oxygen pumped into the tumour sites if thats what kills the bad cells...of course that is to simple bt there must be someone looking into it surely?????

Will catch up on oter threads later..in the meantime, love to all. xx

[Barton]

Thats a good point, Carolyn - somethimg to definitely be aware of if you are on Denosumab, or other bone strengtheners!

Hugs. Barton.x

Ps - good luck with your hospital stay, Andrea (if you have to be in hospital, that is definitely the way to do it!)

[Carolyn52]

Hello Jeanette (and other ladies that drink lemon juice and warm water daily)
Like you I thought it was healthy but daily mail page 48 .says its the worst thing you can have for teeth as basically we are soaking them in acidic solution. Will cause dental erosion and as the denosumab limits our dental work ..we are snookered.!!
Thought I would mention it .
Hugs xxxx

[Moijan]

Hi ladies, yes, was lovely to see you Carolyn.we went on a bit of a tour, didnt we??

yes this sodium. Bicarb sounds a great idea..will have to read the book!

[Babsy]

As an afterthought, I too have had reiki and if you are under the hospice nurse you can have six free sessions. Luckily my one was great and very professional. I've also just started infinite Tai Chi for health so that will be a challenge. Didn't think I exercised that much until I felt the results the day after. I'm absolutely hopeless with the don't push your body too much cos I always do!!! I also have reflexology once a month which I find is great, she always nails the current problem areas in my body which is fascinating. 

[Babsy]

Hi everyone, after I read this book it mentioned this guy with prostate cancer that had spread to the bones and he managed to become cancer free. His website is phkillscancer.com, he also has videos on YouTube if you wanted to look. I did it a couple of weeks ago and became really energised again, worn off a bit now so I'm starting again today. He also mentions the lemon juice, seasalt and distilled water on his site. Apparantly it's all to do with getting lots of oxygen into the cancer cells which they can't cope with so die. Who knows ha ha. Andrea I live in Kent. Hope everything goes ok x Carolyn glad you had a good break. The best thing I did recently was go to Santorini with my husband for the week, did me the world of good. 

[scratch]

Adrea good luck for tomorrow.nice to have your own room especially at night time..hugs sharon😻 x

[bonariensis]

Hi Carolyn, glad you had a good time away. There are, unsurprisingly, three reiki practitioners in Totnes, probably more. Look at www.tnhc.co.uk I know it's quite a trek from Exeter! x

[Carolyn52]

Sooooo. Ladies if I hear that Sainsburys has a shortage of bicarb. I will know you are all trying it and they are running out !!
Andrea ..hope yr treatment goes ok ..sounds like u will at least get five star room and food to help soften the blow of a hospital stay and not have to listen to people in the next bed snoring and farting all night!!
Hugs xxx

[andrea_carts]

Hi Ladies, thanks for the tips will be trying to find the udderly stuff on Amazon shortly. Really interest in the bicarbonate chat so will also be looking for the book Babsy mentioned!

I'm off to hospital tomorrow to have gamna knife to try and sort out the brain mets, they scan in another 3 months and see if has gone anything... I was expecting something sooner but it takes time apparently.

I get an over night stay and as hubby has BUPA a private room and hopefully a nice dinner and breakfast.

Feet still sore so a day of nothing will be good! Must ask onc when she plans to scan liver again to see if Cape is doing anything., she did say they will adjust the dose to try and stop the side effects...,,

Glad you had a lovely time with the family Carolyn, gosh I remember Butlins as a child...

I'm in Kent so don't think I'm near any of you. I do go to a lovely BCC meeting in Sutton though.

Take care and love and hugs to you all.

A xxx

[Carolyn52]

Hello babsy
It's nice to c u posting again as I remember reading your healthy diet back in May and was impressed at how rigid your lifestyle was and hands up ..in all honesty i just couldn't give up my choc and McDonalds !!
I hope you can reverse the bad little critters with your strict regime again though.
Please keep I touch ...this bicarb thing looks quite a challenge but I might just read the book u suggest first !!
Hugs xxx

[Carolyn52]

Hello ladies
I'm back !! Been to butlins with son/dil/ and grankids .phew first time there in nearly 50 years but nice family time.
I'm just reading the thread . Bicarb sounds worth trying ..my mum always said it was good for everything ..cleaning loo, false teeth etc etc and said no home should be without a pot of it !!
Reikki is my next project too ..we don't have many here in Devon but I will look through what I can find.
Moijan ..it was lovely to meet you Thursday and looking forward to meet up with a lot more of you all in Bristol later in month.
Hope everyone is doing ok ...
Hugs xxxx

[HelenAquarius]

Janette, I remember you posting about that reiki lady. I've been having it recenty and really like it. Last week she came and I'd had neck ache and headache for days and after 10mins it as gone and hasn't come back 🙂

Maybe you should find another person to do it?

I'd never heard about bicarb.. Going to look into this too.

Helen xxx