Bone mets - please join in

[Lynnq]

Hello ladies...just winding down after a hectic two days. Spent yesterday with our daughter who made us a lovely Christmas dinner and then today everyone came here to us.....it is our 46th wedding anniversary......our 3 grown up children with their OHs and our 4 granddaughters and one pet dog....

Had the letter regarding my scan results on Christmas Eve....it said that I was stable and that there is - "no new progression of bony disease, no new problems elsewhere and the previously mentioned peritoneal problems were no longer present" - wonderful news indeed.....

Hoping that you all had a good Christmas. Xx

[Bevlaar]

Kaye....great news for you...you must be thrilled! Lets hope it continues 😀

Well this bug certainly seems to have gotten the better of a lot of us this year! My Onc says its a particularly bad one and half the staff in my hospital have it! Ive been put on doxycycline antibiotics now for 7 days which they give to patients with pneumonia and 5 days of prednisolone 10 mg...6 every morning to help my breathing. One good thing though is these are not keeping me awake at night....quite the opposite. I slept till 9.45 this morning! !
I asked Onc if my breathing would get any better in time after the steroids and chemo have finished and the infection has gone (because I can't imagine it being any worse than this) but she just said "well you have an awful lot going on there in the lung so we'll have to just see". Dont know what she meant by that except that it didnt sound very optimistic 😦
Hope you all feel better soon and enjoy the rest of the holiday!
Love and hugz...bev xxx

[LemonDrizzle]

What a day! Had treatment but nothing ready when I got there because no one had thought to take it off hold on Wednesday so it would be made early this morning. Had to wait 3 hours before it could be given to me. Shattered when I got home so had a nap but now awake again. Wouldn't say I'm raring to go but feeling more upto visiting relatives now. Hope you start to feel better, Chocolates and that everyone else is feeling strong enough. Xx

[Desi-2]

Christmas Day dinner was so nice yesterday all three of my sons and one girlfriend. Last year was the first one without my parents and without wishing to sound heartless I had had visions of it being so happy and relaxed. This is becuase my mother had had dementia for several years and Christmases had become so stressful. Unfortunately it was only 3 months after she passed away that I had my secondary diagnosis so there was such a big cloud hanging over us last year at Christmas time. Obviously my situation hasn't changed or at least not for the better health wise but still so much better than the last year. Other half went off to football today so we all had a lovely Boxing Day walk with the dog aswell. Hope the Cape works it's magic for me and we can do the same next year.
Hope everyone else has had a peaceful and enjoyable few days and wishing us all luck with our treatments for the new year xxx

[belinda]

Glad you got some anti-b's Chocolates, yes they should start to make you feel better tomorrow.
Enjoy the Frozen sing song Helen, have taken part myself, lot of fun.
Hope everyone's ok today.
X

[Chocolates]

Hi Sheila and Helen, yes I have an infection so have ab's. She said tomorrow I should start to feel a lot better. Sheila my wbc was low on Tuesday but my neuts were fine so obviously I had the beginning of something and I can't shake it now. I do so want to feel better - I hate feeling like this. However the arrival of the two main men has cheered me up no end. Helen, what are you like - dc is asking me if he can rub in some Vicks. I'm seriously blushing!!!
Sheila - lovely to see you posting I do so hope you are getting stronger everyday.
Sing a long to frozen - I've watched it twice in two days. Have a great time - I'll listen out for you later xx

[2catlady]

Good afternoon lovely ladies,
Chocolate ,you do need antibiotics as I think you have infection and not a cold. Insist on them,you can't muck around with infections xxxxx I'll send DC and GC to look after you ,they can rub Vicks on anywhere you like !!xxxxx

Sheila,it's lovely to hear from you you have been a miss on here xxxxx

Tracy,how are you doing? Hope everything went well for you xxxxx

My sister is coming along and we are having a DVD of sing a long to Frozen ,yippeeeeee! It will be at top of my voice too hee hee!

Huge hugs to everyone and join in with the sing a long,Helen xxxxxxxx

[roxy12]

Hi Chocolates, I'm sorry you are feeling so unwell. I hope you get something that helps. Why don't you phone the nurse hotline. They might be better than your GP. Have you had your bloods done recently? Maybe your white cells are low. I am on injections for mine at the moment and I do feel better than I did last week.

Let us know how you go on won't you?

Get well SOON! Thinking about you.

Lots of love Sheila. Xxx

[Chocolates]

Morning ladies, hope you're all doing ok and recovering from yesterday. I've succumbed to the dreaded sore throat and have a drs appt at 11.40 - I need some antibiotics I think to clear this. 3rd cold in a month - my immune system is clearly struggling. I'm thinking I've just been unlucky - there are lots of bugs about - rather than me struggling with this disease. Now I'm hoping I get a sympathetic Dr and not one who doesn't believe in ab's and says you can fight it - as I'm really not feeling too well and know I need something.

Huge hugs everyone - will we get snow today?
Hxxxxx

[vercors]

Raising a glass to you all, lovely ladies and to absent friends. Enjoy your day tomorrow. Don't forget to ask for help and don't overdo it. Xxx

[Chocolates]

Kaye - fantastic news. Hope you have a great holiday xxx

[LemonDrizzle]

Helen, lovely to see you back on here and hopefully feeling better. Make sure you make your hubbies do their fair share of work over the next few days!
Faraway, you're being treated despicably but you've got lots of great advice off here - don't let it spoil Christmas, let the battle begin after the festive season though.
Hope everyone has a peaceful Christmas Eve, reserving energy for tomorrow.
LD x

[2catlady]

Oh wow,Kaye,that's FANTASTIC xxx a great Christmas pressy.
Have a wonderful Christmas and a great time on your hols xxxxxxxxxxx,huge hugs,Helen xxxxxxxxx

[LemonDrizzle]

Kaye, that's fab news - now enjoy Christmas and then your holiday.
LD x

[rosie53]

Kaye thats fab!!!! Lovely christmas present for you 🙂
hugs Janette x x

[bertie1]

Well good news today TM gone down to 18 on Cape so they've given me another week off to go and enjoy my hols,one week in Tenerife.Hope everyone has agood Xmas and happy new year .
Take care all
Kaye xxxx

[belinda]

Hope everyone here has a Happy Christmas, a peaceful time. X

[Faraway]

Thanks for the link Belinda I will seek advise from CAB and ACAS and sort these evil heartless employers out! Hope you all have a lovely Christmas and SE/seaonal viruses dont cause to many problems xxxxx

[belinda]

Hi Faraway, as already mentioned you are covered by the disability discrimination act. DON'T answer any of the questions, it's guesswork at best and your employer should not be asking such personal intrusive questions. Do you have a union representative? Your employers cannot sack you, how horrible of them to be behaving this way. They are lucky you are not naming and shaming them in your local press. See link below.
https://www.gov.uk/definition-of-disability-under-equality-act-2010

[JulieD]

Had a nice week last week, two pub Christmas lunches! One with some SBC friends and one with my sisters and parents. only problem is I've picked up the horrid virus that seems to be going round. Bad throat, coughing,phlegm ......Just hope it clears by Christmas.

I did have some good news a couple of weeks ago, had CT and bone scans brought forward due to pain but both showed me stable so can relax over the festivities.

I hope those of you waiting for results get good news too.

It's been quiet on live chat the past few weeks, would be lovely to see some of you there tomorrow but if you can't make it I'll share a mince pie with you on Christmas Eve.

Farawat I agree with the others, your employer has no right to ask such questions I hope you get it sorted and they are made to feel ashamed of themselves.

Best wishes to you all and strength to those suffering xx

[rosie53]

Hi ladies, hope everyone is ok.
Faraway.....OMG i cannot believe what a heartless, insensitive lot you work for!!! How unfair you have enough to be dealing with without having to fight them too. As the others have said get in touch with CAB and ACAS they are very helpful
Helen, hope your ok not had any of your lovely posts for a few days.
Hope everyone else is ok.
hugs Janette x x

[Bevlaar]

Hi all! I'm not too bad thanks chocolates but still coughing with this bad chest. And the breathlessness is something else! Just walking up to bathroom last night i was gasping for air when i got there as if i couldnt draw in enough air into my lungs..frightening really. May come and sit with you later if DC doesnt mind.... xxxxx

[Chocolates]

Afternoon ladies - really manic here trying to get everything done after being poorly last week.

Faraway - I'm disgusted with your employers - I hope things turn out the way you want them to. Whatever happens I hope you complain at the top of the hills shouting and screaming - how dare they.

Hello everyone else - Bev, Helen how are you both doing? Sheila - lovely to see you posting again. I'm going to our retreat later - dc has asked me to pop in for a night cap - how can I refuse?!!!!

Hope you're all more organised than me. My star is shining brightly for you all xxx
Huge hugs xxx

[bill-ben]

Hi Faraway just a quickie about your employers. Their behaviour stinks. I would definately go to the CAB and Macmillian but I would also try ACAS as well. They have helped my son's girlfriend with her equally awfull employers .

[nicky08]

Hi
Firstly, edwina, it may be worth putting the same question on the E/E thread as well so some of the other ladies who've been on it can answer. Sorry I can't re enter its exact name, also that I can't help in any way other than sympathise about the mouth ulcers which I got with my first dose of Tax. They can be horrendous and affect everything you do 😞
Faraway, I cannot believe your work is asking all these questions. You may want to get advise from Macmillan or citizens advice as I'm sure they can't do this to you. It's been mentioned before but you are covered by the disability discrimination act and I bet they wouldn't do it to anyone else who has any form of disability. Hoping your day isn't too long and you do get your chemo done but I know what you mean about not wanting it.
To everyone else on this thread hoping you are doing well, getting good results and not getting too stressed about the extra stuff we all have to do and deal with at this time of the year. Apologies for not being more specific I can't read back at the moment.
Nicky x

[Faraway]

Hi everyone, so much has happened on here since my last post, so much news its hard to keep up. I am fighting work all the way with them trying to get rid of me, Onc has been very supportive and said any questions they ask him he will sit down with me and we will work out the answers together. The cheeky buggers have asked for my life expectancy I mean how dare they, that really did make me mad! Got third docetaxel in 5 hours but neutrophils were not high even so need another blood test first which means hanging around for hours for the results. i am on the GCSF injections so I thought my bloods would have been fine. Part of me thinks it would be nice if it was delayed for a week so I could enjoy Christmas. Good luck to everyone having treatment/results. Big cyber hugs xxxxx

[Faraway]

Hi Edwina64, your mouth ulchers sound awful and I have not experience them but have the skin rash inc blisters I was given a steriod cream from Onc which started to work within a couple of days, the itch eased and it soon started to clear up, maybe you could phone GP and ask for some? Good luck with everything, sending you a cyber hug x

[edwina64]

Hi everyone. I was give e/e for two wweks 10m dose. Due to horrendous mouth ulcers and a rash I have had ro give up, having two weeks off and then going on 5m dose. The thing is I still can't eat or speak due to ulcers and the rash which started  on my chest is now slowly popping up all over , it is very dry and has blisters and is weeping oh joy! I am beside myself but don't get to see onc untill new year due to christmas. Anyone recommend what helps with the rash. Tried aloe vera cream , eurax itch relief and e45itch relief but hasn't helped at all. I am scared of going back on the treatment at all as side effets so severe anyone tried then lower dose ? I havent been able to eat anything for three weeks now and been off the treatment for a week any ideas how long it will take to get rid of ulcers and rash. Husband said he will liquidise christmas dinner ugg!!!

[roxy12]

Thank you Belinda. I remember seeing posts from funny face in the past but can't remember where they were now.

Try not to worry about your appointment with your onc. I was terrified last week but came home  happy! I'm sure you will or as happy as you can be living with this awful disease. Have a fantastic Christmas.

Love Sheila. Xxx

[roxy12]

Congratulations Lynnq. Stable is good! I was so pleased when my scan showed stable. Good news for Christmas. Have a lovely time! Xxx

[nicky08]

My goodness Mowser, you do know how to throw a party! Sounds fab so I hope everything goes well with all your family and friends. I'm sure you will be exhausted by the end (or even the beginnining!) of it but I really hope you enjoy it and rest up for the next few days.
Liz, hope you feel better this morning.
Take care everyone whatever you are doing.
Nicky x

[belinda]

Hope the tablet taking goes ok this morning Liz. Mowser, I hope the party goes off all ok.
Have a peaceful weekend all. X

[LemonDrizzle]

What a week, Liz. Good luck for tomorrow - keep on top of the sickness like nurse said and hopefully you'll feel much better.
LD x

[lizH]

Hi ladies,

Not been on for a while and just caught up with everyone.

I have been down in the dumps as I have been in hospital ( portacath fitted an I was sick under anesthetic, got an infection and had to stay in for 5days!!!)
All of this week a have had really bad sickness , just in the morning. Just a little water and I am reaching for ages. The nurse said the moment I open my eyes take an anti sick without moving and with as little water as possible. Wish me luck for tomorrow!!

Had taxol today with port and it went well. Steroids have lifted me.

Sending big hugs and love to everyone

Liz xxxx

[Mowser]

Thanks,honestly think I have been too optimistic.

Today I had to keep lying down to rest my back it is so painful I have to lie down... Just grinned and beared it standing making and icing gingerbread men with Ellie. I am so, so tired!! Liver mets troubling me too. 

To hell with it-I am determined to enjoy myself, but right now I really need a hot bath!!  

See you gals tomorrow!!

Mowser xxxx

[LemonDrizzle]

Bev, I always had it piriton before docetaxel and then came home with some non drowsy tablets to take daily. My onc at the Christie doesn't give it without antihistamine so it might be worth mentioning it next week. When I stopped the docetaxel they automatically stopped the piriton too but typically I had allergic rash after Herceptin and pertuzumab so still have it.
Mowser, I'm totally exhausted just reading about your party - enjoy it and let us all know how it went.
LD x

[Bevlaar]

Thanks tracey thats a great help. Will mention it next wed. Funnily enough i sometimes take asda sleepaid when i cant sleep. It only contains an antihistamine and im sure im not so breathless the next day. Xxx

[Desi-2]

Thanks Mowser for your message and support. Wow what a party you have planned I hope it is an amazing success and you all have the most brilliant time xxxx

[Desi-2]

Sounds the same as me Bev weakly Er pos 3/8 but after lung biopsy it showed triple neg so we're in the same boat. He did mention the Doxatel that your on then changed his mind to Cape. Just reading spud labs post and I did have breathlessness after the 2 Fec I had. This was thought to be an allergic reaction. I was given antihistamine before the second one, I wonder if ti might be worth you getting some to take along and if they ok it take them just before your infusion, I found it did help xxx

[rosie53]

Ooops sorry.....i got bleeped!!! Naughty step for me x x x

[rosie53]

Oh Mowser, it sounds like you are going to have a ball at your party....im exhausted just reading about it 🙂 you party girl and enjoy yourself!!!
Desi, stay strong, try not to let peoples thoughtlessness get to you (i know easier said than done) us "mets"girls are made of strong stuff and we cannot let this **bleep** awful disease get the better of us!!!
Huge love and hugs Janette x x x

[Bevlaar]

Yes the breathlessness has got worse since starting docetaxol. Im seeing onc on xmas eve at clinic for bloods. ..as my chemo is on sat 27th. So will mention it then thanks Spudlab. I wasnt like this on Capecitabine. xxxx

[spudlab]

Bev I was really breathless after docetaxol. I thought it was because I was more anaemic but it turned out to be an allergic type reaction in my lungs. It was picked up on a CT scan and got better very quickly with steroids. When are you seeing your doctor again? Have you had a chest X-ray? My X-Ray looked a bit like an infection but was just the hypersensitivity. Hope you feel better soon x

[Bevlaar]

Hi Tracey...I'm only weakly positive. .3/8 so Onc has said he doesn't think that hormone therapy will benefit me. I was hoping that something would so that i could have a break from the chemo and also knowing that i had another safety net.
Tamoxifen stopped working for me after nearly 5 years. My last primary 5 years ago was only weakly positive too. My first primary in 2005 was TNBC.
How about you?
Bev xxx

[Mowser]

Hi Desi,

You are not alone in struggling with your emotions at this very special time. I have had worrying news Tuesday that my liver mets have grown and spread, and my treatment (Capecitebine) is no longer working after 9 months, so they have switched treatments. So waiting and hoping once again. This living with uncertainty, constantly having to re set the dial in terms of expectations really takes it out of you.

Oncologist as I was leaving, said 'but dont let it spoil your Christmas' No s..t Sherlock

I felt like saying would you like to take it for Christmas then, with all the pain, discomfort, fatigue stress and insomnia that accompanies it, and I can relax properly for the first time since my diagnosis and actually fully and completely enjoy myself! Of course he wouldn't.

Like us all, I am trying really hard to take things one day etc. But it is there lurking in the back of my mind and comes back to bite me, usually when I get the symptoms back. I have liver pain and back pain and quite a bit of bloating, and am now fully aquainted with liquid morphine. I havent wanted to be its friend for 7 months, as it makes me think I am 'really ill'. LOL. Now I know I need it to try to keep on top of the pain.

I had my works party yesterday which I didnt feel well enough to go to,.and they texted that they missed me, so we started up a text conversation that my colleague was relaying to the team, and they were laughing their heads off. We toasted each other exactly at 9pm, and they said it was like I was there with them! Another cyber party. Enjoyed it!!

We are putting the tree up today, (one week later than normal) and having a massive party tomorrow with all of my sons friends, and my friends and our family. Its going to be mental-I dont know how I will be able to hold out. He has gone all out with a smoke and bubble machine accompanying speakers and sound system borrowed from a friend who uses it for the frigging local village fair outdoors in the summer!!! Going to be very loud. 🙂 We have invited all the neighbours so they cant complain!!

We have hired marquees to go out in the front garden to extend the space. I am cooking-after my son announced what lovely food guests could expect on FB! There will be candles lit all over the downstairs, fairy lights twinkling in the marquee, kitchen and dining room (dancing room) and my beautiful girl Ellie is making Xmas Gingerbread men and decorating them.

All of her ingredients are waiting for her to come home from her part time job at Sainsburys Local.

Christmas cards hung all round the room. Mulled wine and champagne, and hopefully lots of laughs and fun. I have shopped on line as much as possible this year. Still more to do, feet still red and sore But I will get there!!

Desi, you are among friends. You will be fine. Please dont worry about your symptoms, theres nothing you can do until you see your onc. on january. So make sure you stay pain free, and you go enjoy a wonderful Christmas with your loved ones, and hold them close. I know that's what I am going to do..

Loads of love

Mowser xxxxxx 

[nicky08]

Hi Helen
There's obviously never a good time to get a secondary diagnosis but at this time of the year it seems even more harsh. There's so much information and shock to take in and all the consultants take a holiday, leaving you in limbo! Glad to hear you are coping OK with Tax, I've been 'OK' as well but noticing the build up of tiredness and muscle fatigue the more I have. Hoping to get my taste buds back in time for my Christmas dinner as well. Take care
Nicky x

[helen44]

Hi everyone,

Just wanted to share my 2 year 'cancerversary' today with you (bone & liver mets) & to thank everyone who has kept me going. I am currently on my 3rd cycle of docetaxol and (touch wood) coping quite well so I am really sorry to hear of some of your horror stories of this drug - I hope & pray that it will get better for you all.

Take care, love Helen xx

[Tinkerbelle]

Just wanted to say Hugs to those who are struggling at the moment whether physically or emotionally, particlarly Bev and Desi. x

[rosie53]

Hi Lynn, thats great news, i bet you feel so much better and reassured now....reassurance is so important to us isnt it.
Hi Bev, sorry you are struggling at the minute and anyone else who is struggling....sending you a BIG hug.
Love Janette x x

[LemonDrizzle]

Good morning everyone
Lynn, great news from yesterday - now you can begin to enjoy Christmas and that holiday planning.
Wishing that anyone struggling with the emotional part of this time of year or not feeling well has a better day and all goes well for those having treatment or appts today.
Been doing Christmas things on auto pilot so far, but actually feel better about it this morning so going to wraps pressies and make them pretty with bows and ribbons which I've never done before as I've not had enough time when working - one positive about this illness methinks!
LD x