Bone mets - please join in

[racer]

Hi everyone , hope you are all enjoying the sunshine today . Been for ct scan this afternoon so hopefully will have results in 2-3 weeks time. I am not going to try to think about it . Easily said than done. Just waiting game now.
I had been seen Orthopaedic Surgeon about hip replacement as had radio on hip in 2010 . He was not very nice really and was quite blunt with me regarding prognosis. In other words might be too risky due to bone mets . I can't have a reconstruction due to bone mets .
Just taking one day at a time xxx

[Carolyn52]

I think I must be lucky as my lumpectomy didn't effect my bras at all ..it's sort of at the top and I have never needed chicken fillets ( pork chops or beef steaks ?ha ha) or anything ..it must b so difficult though for you all and obviously mastectomy ladies must struggle even more ..
Wonder how men would cope if they had to loose one of their crown jewels ?
Hugs xxx

[Carolyn52]

Good morning ladies.
Well ventured to boot sale this morning . First time for ages but stocked up on fruit from market stall ..bit too healthy (got stash of orange aero and chocky buttons in fridge though) and got a few little bargains for a few pence so bit of fun.
Still got sons dog til tomorrow ..will miss him but not his dog hair ..it's everywhere ..in my coffee this morning and even in a packet of frozen peas in freezer ..it's a wonder he isn't bald ! Bless his Labrador paws !!
Got roast pork in oven ..yum .
Both my son's have coats for the dogs ..Scooby has a sort of padded wax one but he wouldn't walk in it either ..then we realised it was rubbing his Willy ..so I cut out a bigger hole for it and now he's fine when it rains !!
Hope u all enjoy a nice sunny Sunday ..I've got chocolate and the papers ..what more could an old lady want ?
Hugs xxxx

[KathrynK]

Morning everyone, At least there has been a bit of sun this morning which was nice when I took the dog out earlier. My husband is away for the weekend with his friends on a canal boat so all the dog walking etc is left to me. A dog is a great distraction for husbands and means they often go for long walks which gets them out of your hair for a bit!

I find this forum so helpful! I am going to look into the heat patches for my Mum as she is in so much pain with her hip whilst she is waiting for her rads and I'm going to take her to M&S for a new bra 😃

Hope you all have a relaxing day doing something you enjoy. The loss of Caroline Aherne makes me even more determined that we should seize the day - Carpe Diem! X

[rosie53]

Morning ladies.
Hi Nicky, lovely to hear from you, hope your keeping well?
Hi also to Marie, I've always done underwired padded bra's from good old M&S, I had a lumpectomy in 2007 and although I don't need "specialised" bra's I definitely need some padding and uplift 😆.
Hope you are all enjoying the weekend, I had my gorgeous little Heidi for the day yesterday.....love my little cavachon! She gets spoilt rotten, we got her a doggy raincoat (yes in July!!!) But when we put it on her she just stood still and wouldn't walk, she was so funny.....hope the shop will let me return it as it wasn't cheap!!
Hugs janette xxxx
RIP Caroline Aherne, yet another tragic loss to this terrible disease, a true northern lass....so sad! Xx

[nicky08]

Ha ha Carolyn. Don't you worry, I'm as mad as you but I let you do the keeping the spirits bit up as you do such a great job. I like to share my 'wisdom' but, boy I wish I'd never had to learn it!

imagining your glitter pjs but a strange description so maybe my imagination is running riot!

Hi Marie, good to hear from you and about the bras. I also had a lumpectomy with my primary 13 years ago and now need to add some padding to my bra to even things up. May just have to look into this further as so far only add a chicken fillet to my normal bra. Thx for sharing.

hi to all mets ladies. Hope treatments are going OK, although a brief read through of some other threads seems that some of us are not doing so well.

Take care

Nicky x

[Marirose]

Hello Marie lovely to hear from you

Marks and Spencer also take VAT off although the bras fit funny I found getting the next size  and smaller cup fits better.

Love and ((((hugs)))) xxx

[Carolyn52]

Hiya Marie.
Like u I only had lumpectomy back in 2004 and so can wear normal bras. My mum that had bc in 1968 always blamed the under wiring in hers for it and wouldn't let my sis and myself wear them !!! Soooo I buy underwired and cut out the wires still as they are a better shape ..silly really .
Hugs xxx

[Marie123]

Good afternoon ladies ,

BRAS

I  Have just got back from shopping for bras.

I had  a lump removed and then rads. this infact left the ' good ' side smaller than the  'bad side'. I have a 'chicken fillet ' to even it out. Sorry about this , but have to explain the full story.Have been wearing normal bras.

Today I found really pretty post op bras, that fitted the 'Chicken fillet' when I paid I was told I was entitled to the VAT off . So pleased , because they are  pretty and I got a discount.

Not sure if the VAT rule is new or I was  just never told.

Wishing you all a good weekend.

A very happy Marie xxxx

[Carolyn52]

Ha ha ..Jeanette . Yes I deserve my detention although maybe you all deserved a break from my irritating postings . No use to man or beast really when I read the helpful postings that Nicky and a lot of the other members make !!
Glad to hear the heat pads are doing good for you ...anything is better than pain and popping pills .
Still sat here in my pjs ..they are new and have a glitter heart on the front woke up this morning and was covered in loose glitter from them ( should have washed them first) .. looked like the fairy Xmas forgot!!
Hugs everyone xxxc☺☺☺

[rosie53]

Morning ladies. 

Carolyn, glad everything is ok with you, I'll let you off without detention as your your attendance is usually excellent 😆😆. 

Just want to mention the heat patches that Tiger recommended last week, I put one on yesterday because my hip wanted to play silly buggers....AGAIN!  anyway, I can highly recommended them too, I put one on at 5pm yesterday I've still got it on now!!  (7.30 am) it says on the box lasts for up to 8 hours but it's much longer, they really do help take the edge off the pain and for me that is great because I hate taking painkillers.

Thanks again Tiger for the tip. 

Hugs Janette xxxx 

[Carolyn52]

Funny face
Glad you have joined the shopping club here now ..we are all serial shoppers and its nice to treat ourselves to nice things. It's a good side effect of our treatment.
I sympathize with you over hubby ...strange things when they have time on their hands.
The only thing you can do is get him a man cave (shed or garage) pop a comfy chair and tv there and maybe he will enjoy some man time in his mancave !!
But stand your ground and keep spending.
👠👜 xxx

[Carolyn52]

Omg ...I've just had a weird thought ...how many ladies here have July birthdays and born under the star sign of "cancer" .my mum,aunty and two best friends were all cancerians and I am too.
Maybe we are doomed as soon as we are born !
💟💟💟

[julzd]

Hi ladies hope you all have a good weekend. I've been working so haven't been on as much. I've had three of the accupuncture treatments now for the hot flushes don't think it makes a difference but the therapist said it can take six treatment so I'm going to persavere to see and I will let you all know. Julie x x

[Marirose]

Dear FF

I sympathise with you my hubby is retired and he drives me up the wall. He continually watches me and has a habbit of resting his hands on his hips. Ok he is very good he does help alot but he never listens to me I feel as though I am hitting my head against a brick wall I feel as though I am nagging him all the time. He wants to help clean the bathroom but he manages to do it so quick but misses different places and I feel guilty telling him. I may be loseing a lot of mobility but I still like to try to carry on as normal but he insists in jumping in to take over. I let him do some gardening which is totally alien to him as he never has done gardening (I once caught him transplanting a weed because it had a lovely flower)he did well the first year growing veg which he loved. First year great he asked for my advice and took it but now he think he knows everything about gardening grrrrrrrrrrrrr he is hopeless.

I feel as though my life is not my own anymore. But I like it when he goes out to play in the garden with watering can which he loves watering and I put up with his complaining when things don't grow like he wants them to grow. Oh and I hate when it rains because he is back in the house.

So best of luck try to get him to get a hobby to keep him out of your hair.

Love and ((((hugs))))

[Carolyn52]

Hiya. Jeanette

Just feeling a bit boring today.. been lurking around the threads a few times. Weather certainly not summer ish and feeling cold.. 

As my knee is still iffy.. haven't been able to go out today or do much. Hopefully it will get better again as never had problems with it before.

Hugs everyone xxxx

[rosie53]

Hi ladies, hope your all keeping well. The weather is pants!!! It's looking like we arn't going to get a summer..again! 

Carolyn, how are you hun? ??? You've been quiet today? 

Hope you all have a lovely pain free weekend Hugs Janette xxxx 

[LouBoo]

Thanks Sue. Have felt slightly uplifted since yesterday - had second opinion appoint at Royal Marsden - with professor who also confirmed that many women live for years and years with this condition.  Am currently on Tamoxifen and Zometa infusion - was recommended yesterday to also start on Zoladex, to shut down all hormone activity - hot flushes here we come!!!

Am off up to London for the w/e with hubby - we're going down the distraction route at the moment - let's hope for some nice weather!!

So good to read everyone's posts here -so much positivity (and humour, which is great) - has given me hope, when I didn't think there was any.

Thank you all.

Louise x

[scoobiesue]

Louise my onc has bone ladies who are stil here after 15 years. I guess it all depnds on how we respond to treatment. I know how you feel. When I was in hospital after my SBC diagnosis I felt my life was over. Eventually I have taugh myself to keep it on the back burner Not always but mostly. You will get there.

Sue x

[nicky08]

Ha ha FF, hmmmm, maybe he has way too much time on his hands. We need to come up with something that will keep him occupied so he doesn't keep asking you what you are doing.

Any ideas ladies?

I'll wrack my brains although with so much chemo over the years I don't think it will help much.

Nicky x

[funnyface]

Going crazy! Love my hubby dearly, but he is driving me nuts! He has been home on disability since 2008 and questions everything I do! Today, I told him I was going to get a hair cut and he said you just had it cut 2 weeks ago! No, it was 6 weeks ago and I'm hot and sweaty and can't stand it. Told I ordered th o as things too put around my neck to cool me off. He said, I'm sure we had some of those. You need to look in the closets first.  No, we have never had them. I went to the hairdresser agitated, so I bought new shampoo, cream rinse and hair spray there that is more expensive than I spend. Went to the store and bought new make-up, hair coloring, nail polish. Felt quite bratty! He never in the past cared when I did something. The other day he was telling me how to crack eggs! Ready to use his head!

[Carolyn52]

Hello moijan
Right this is sensible Carolyn now ..try to put up with the cold cap luv ..once the hair is gone and once u look like a snooker ball ..it takes ages to grow back especially a fringe !! What would the vicar think when u go to church on Sunday wearing a purple wig ?
You are all welcome to camp out on my lawn in sunny Devon but you will be bombarded with seagulls and a lone mouse that next doors cat can't be bothered with ...also my son's boxer dog uses the lawn for his poo a couple days and its steaming, smelly and as much as a horse would do !! so you would need to bring shovels and crash helmets for protection against seagulls !!!
Hugs xxx🐕🐭🐥

[MarionP]

Evening ladies,

Got a hot tip for the shopaholics amongst you! There's a website called Just last season which is an outlet for all the Jaques Vert ranges (Planet, Precis, Kaliko, Eastex, Dash, etc.) Today they are having a flash sale with everything (and I mean EVERYTHING) £25 or less!

It's payday so I've just treated myself. Happy shopping!

Love Marion

[Moijan]

Yes LouBoo you are absolutely right, Re the mindfulness,and if I practiced it well enough I would hopefully arrive at each hospnital visit surprised! I had a better day today and of course cycle one is complete.

strangely my white cells are not too bad( yet!) 

yes Carolyn , you are a complete joy! i was sitting under my cold cap, thinking b*gg*r this for a game of monopoly!,, Maybe next cycle I'll opt out and buy myself a purple wig! See im doing a 'Carolyn'i

not sure that  purple or blue would add to any allure I had left tho....

we could all time our weeks off to conicide and book a week to go and camp in Carolyns back garden!

love and hugs,Moijanxx

[Carolyn52]

Jeanette
I'm so not grown up ...don't look at my scans or ask . Oncologist said my last one was no progression and bones repairing so i took that info and ran !! Just savoured the moment.☺
I think as herceptin will not be for us in the future as we haven't got the right cancer . ..our future lies with ibrance but its still not approved here in the UK apart from a few clinical trials and my oncologist says I can't go on them as I have other proven options to try first .
Hugs xx

[LouBoo]

Thanks Moijan - am off for a second opinion today.  Totally trust my hospital and oncologist, but just want to double, double check I'm on the right treatment plan.  Am also going to investigate the possibility of any trials that might be available and which I might be suitable for.

Having never heard of mindfulness before a couple of weeks ago, I am also trying to apply it to my daily life, but my mind does keep wandering to the 'what if's'.

Really hope your next bout of chemo goes ok for you - I guess part of living in the present is accepting that hospital visits are part and parcel of it.

Louise x

[rosie53]

Hi Carolyn, yes I am also thinking I have too many mets in my hip that's why she poo pooed the idea (I'm like you don't want to know all the gory details) I've never asked the extent of my mets....ignorance is bliss!!
Hugs Janette xx

[Carolyn52]

Hiya Jeanette
It's good to rant and let off steam. As u know I'm useless at sensible advice but as far as a hip replacement is concerned I was told that I had too many Mets in the hip socket for a replacement that's why I had a femur pin to stabilize the hip and pelvis damage. A lot of ladies do have hip replacements though scoobiesue here had one and is a lot more mobile than I am with it.
The scan stress is horrible phew don't think I want to cope with that again .ha ha. Xxx

[rosie53]

Morning ladies. 

Carolyn you crack me up........who needs medication when we have you!!!😂

Interesting to read about hip replacements, when my hubby questioned this option with my onc at my last appt she totally dismissed this option??.....I wonder why? 

Well I got my CT appt yesterday for the 3rd August......my oncology appt is 28th July 😀 for results!....hopeless, so called to explain this and the only other next appt is 21st July that is 1 week before my I see onc, when I questioned whether that would be enough time for my results to be ready she said well you could phone your onc's secretary and see if you can get a later date to see her 😠😠omg do they not realise how stressful the whole situation is without having to worry appts, results and dates!!!

Sorry rant over it just makes me so mad!!

Take care ladies Hugs Janette xxxxxxx 

[Moijan]

Hi Louboo, i too have bone mets, was just thinking about your query, It feels like you are touching upon the uncertainty that many of us feel. All I can say is that it seems different for each of us, i had been leading a'normal life' for 30 months, but now my liver mets have started creeping, so more chemo. So more intrusion of hospital into  my life!

i also find that any bony symptom can raise a cancer query in my mind, i get sciatica when im stressed and 

then start worrying it could be cancer related, but then.... im free of it for a while, so its unlikely.

I am trying to practise mindfulness, so as to have less what ifs, but its a hard struggle, as chemo day grows nearer, I start feeling powerless........its so unproductive.....

i hope you feel better about things soon, I will say one thing, almost anything is possible so maybe it will be many years for you before, if any progression at all, I hope so.

Moijanxx

[LouBoo]

Thanks Sue. You mention managing to live your life almost normally - I aim to get there!!!  People keep telling me that bone mets is very manageable - but are they talking months or years?  I guess that's like asking how long is a piece of string - it would just be good to know that there's a chance of seeing a few more birthdays and christmas's - I'm just not convinced at the moment! 

Louise x

[Carolyn52]

Well I'm glad I cheered a few of you up ...got a foot pampering kit but don't think I will risk it tonight !!
💜💜

[Carolyn52]

Kathryn
The rads should help your mum with the pain and a more sensible choice rather than surgery which involves a lot of recovery time etc.
I had hip rads ..one blast and it was done ..it did help with pain but takes up to two weeks to kick in and it does make u feel a bit sick but they give u anti sickness pills.
Xx

[Marirose]

Thankyou Carolyn 

You gave me such a laugh this morning when I came back from Hull hospital before shooting off again to Doncaster hospital. It kept me chuckling for quite a while.

((((hugs))))

[KathrynK]

Thankyou. My Mum is also having monthly denosumab injections and she takes tamoxifen. You may have seen in my reply to Carolyn she is being given radiotherapy on her hip. If that doesn't work then maybe she will need a hip replacement. The consultant was lovely and helped to put my Mum's mind at rest. Thankyou for your welcome x

[KathrynK]

Thankyou for your reply Carolyn. We have been to the Royal Liverpool and met with a very nice mets bone surgeon. After careful consideration he is going to try radiotherapy first and only consider a hip replacement if it doesn't work. Radiotherapy worked well on her spine so fingers crossed.

I told her about this forum and she thought it was a great idea. She will be thrilled that I've had some replies so Thankyou!

[Carolyn52]

The lip is better ..no trout pout anymore ..must be allergic to immac now as never any probs before !!
Life's a bitch ....just laugh !!
Xxx

[Barton]

Oh Carolyn,  you do cheer me up! Your poor lip, though! You're not supposed to hurt yourself more - you already have enough pain! Hoping your lip gets better soon.

Hugs. Barton.x

[julzd]

Carolyn you cheer me up you're so funny x x

[Stillhere]

Carolyn, you are so hilarious!!! Nearly snorted my tea over my iPad I was laughing so much 😆 😆 😂 😂

[Carolyn52]

Good morning ladies.
Hope everyone is coping with all the aches and pains ..this weatger doesn't help ..we need sunshine to help our poor bones.
Anyway yesterday ..I was a grown up and got myself a knee support for my baddy knee ...put it on last night before I got into bed with ibrufen gel ..woke up this morning ..it had rolled up in a ball and almost cut my circulation off to my foot !! Bought a gel mask also ..that slipped and I woke up looking like a pirate ..with only one eye covered ..looked like Jack sparrow ( yes please ..have some of that) and the all night face mask had gone so crusty ...I thought I had a stroke as I couldn't move my face muscles !! I also defuzzed my top lip yesterday and burnt my lip so that looks like I have done ten rounds with Mike Tyson !! So much for pampering myself!!
💜💜happy days in this house xxx

[scoobiesue]

Hello and welcome Louise. I was diagnosed in March 2015 with SBC. Like you i found it a very lonely world. Now I manage to live my life almost normally. Scans bring their own fears. It's always a worry. However it's  a big comfort to be able to share. You will love the ladies on this site. Full of sound advice. I like the fun our resident joker brings. Thank you Carolyn.Be kind to yourself.

Love to all Sue

[Anna_BCC]

Hi everyone

There is often talk and discussion about stress and cancer.  Our nurses have provided some information to help dispel some of the more unhelpful myths.

Information about stress and breast cancer can be confusing and conflicting. Many people think that stress has helped to cause their cancer.  A number of studies have looked at links between stress and breast cancer and no definite link has been found.  For anyone living with secondary breast cancer there is currently no evidence to suggest that stress will feed the cancer or cause it to get worse.

If anyone would like to talk about this further please feel free to phone our free, confidential Helpline. The number is 0808 800 6000. We're here Monday to Saturday from 9am. On Mondays and Wednesdays we're open until 7pm, other weekdays it's 5pm and on Saturdays it's 1pm.

You can also email our nurses directly

Best wishes

Eve

Breast Cancer Care Nurse

[racer]

Thank you for your advice. I will go . Think he was shocked as well. I know my tablets will stop working and was told from day one.?they said there are options. I think don't want to sound horrible that I had become complacent with it thinking I was better than I am x

[LouBoo]

Hi All - I am new this site, and just finding my way around this forum, but I am in a very similar situation as you, cromercrab (good name!) - dx with primary bc and bone mets, all within the last 3 months and at the age of 50!  I went from being told I had a very small lump to, on day of surgery, being told a second lump had been found (surgery postponed for 2 weeks), to coming out of surgery and being told, a week later, that 17 of 18 lymph nodes had tested positive.  A CT, Isotope and PET scan later, I was told 3 weeks ago that the primary bc had gone secondary to a number of my vertebrae and also my sternum (classic areas for it to start in, so I understand).  I have gone through a whole host of emotions, from despair and fear to optimism and hope - I am somewhere in the middle now, but feel it's an extremely lonely place.  I have wonderful family and friends around me, but nobody who really knows what I'm going through... and then I came across this forum!!  Whilst I wouldn't wish this disease on anyone, it is sooooo good to know that there are other people going through, and feeling the same, as I am, and who are managing it well. Having read bits from the forum last night I had my first good night's sleep in a long while and I am feeling much buoyed up from reading many of the 'posts' that appear here.  I feel like I'm part of a club, not one that I wanted to be a member of, but one that could be a future lifeline.  Thank you.  Louise xx

[nicky08]

Hi racer

Sorry to hear you are back with some worries about your mets. I was in a similar position in 2013 when my mets, that had been stable on anastrozole (Arimidex) for 5 years were shown to have spread to my liver. I had sort of expected my bone mets to spread at some point but my oncologist was gob smacked! Anyway, from knowledge I gained from here I asked for a liver biopsy to be done as I know the chance of a change in receptor status is up to 30% (depending on who's research you read). I had this done after starting Capecitabine and low and behold after 10 years of being HER2- I was now HER2+ (again my very knowledgeable oncologist was gob smacked). Due to a problem with my heart, caused by FEC chemo 5 years earlier, I couldn't have Herceptin at the time but stayed on Capecitabine for 18 months as it kept my mets stable and shrinking. In this time I had a lot, and I mean a lot, of work done on my heart to get it up to a normal function. This meant once a scan showed Capecitabine wasn't quite holding things stable I could go onto Herceptin treatment which I have now been on. Although my liver mets haven't disappeared completely they continue to shrink ( they were never very big in the first place) with some of them now being classed as benign or showing as the left over group of blood vessels that feed a tumour once the tumour itself has gone.

So, my advice would be that if liver mets are diagnosed there will be an effective treatment plan for you (the fact you have been stable on hormone treatment for this long would indicate you respond well) and to ask for a liver biopsy if it's possible - but this depends on the location of the met/s. Although this is an uncomfortable procedure if it gives an up to date pathology of your mets then it's worth having done in my opinion.

Please feel free to ask any other questions and I hope you get some answers soon as we all know the waiting game seems to be the worst part.

Nicky x

[funnyface]

Carolyn, You sure are making me smile! FF

[Carolyn52]

Silly question ?
Can you have rads on knees? I know I have a few Mets on my knee but don't get any trouble but I can't put any weight on it since Saturday.
Think its because I spent three hours on my feet at a fete on Saturday but if it doesn't get better in a few more days ..might have to ask oncologist for further treatment .

[racer]

Thank you xxxx

[Carolyn52]

Hiya racer.
I think anasyrazole is arimidex and belongs to the same family as letrozole ..my oncologist says they vary ..sometimes keep things stable for three months or up to three years so it might b a time for a change to another one . Until you get actual results from oncologist its just the waiting game .
Try not to stress too much in the meantime as stress feeds cancer .......
Hugs xx