Bone mets - please join in

[funnyface]

We are prepared and waiting for Winter Storm Stella! They increased the amounts and we are expecting 18 to 24 inches in our area. Supposed to be a heavy wet snow. Generator is ready!!! FF

[Carolyn52]

Hello ladies
Hope u have all had a nice weekend and are relaxing like me watching Crufts ...phew I love them all and quite an assortment of dogs as finalists .
We do doggy day care for both our son's dogs so don't need one of our own.
Hugs xxxx

[bonariensis]

Hi Funnyface.  Sounds like you and the weather have a lot in common right now. Spring is trying here but can only manage the odd day. I have been snuggling down cosily in bed only to wake up later throwing off the duvet for the last 25 to 30 years but have only had BC for 8 years.
love to all     B xx

[funnyface]

Crazy weather continues here! February had more warm days tha I've ever seen. March is also strange. We are having February weather. Thursday was in the mid 60's. Friday low 30'sand we got 3 inches of snow.Supposed to be cold Saturday and Sunday. Then starting Monday night and all day Tuesday we are getting a major snow storm. Charts are already coming out! Our area is in a section they have labeled crippling!! Never saw that word used before. All I can say is Oh wonderful!!! FF

[stresshead]

So glad i'm not the only one!!!  mine is more being constantly hot even when others are freezing. I still maintain that its the chemo that toatally wipes out or internal regultion system. I only have a 4 tog quilt and that is on and off all night!!.x

[funnyface]

Pippin, My body temperature works light someone keeps turning a switch! Hot then Cold, Cold then Hot 24/ 7!  FF

[Carolyn52]

Hi pippin
I don't know whether you are on chemo or hormone but the hot and cold thingy is very common ...the important thing is LAYERS ...for clothes and bedding !! I have a lightweight duvet and a throw ..during the night if I'm too hot ...my feet are in and out like I'm doing the okey cokey with the duvet ..window is open/shut and I huff and puff or shiver ..both are extremes !! Poor hubby shivers as he feels the cold !!
I have sort of got used to it now ...its funny when I'm hot ..I don't sweat like u would normally do ..my head just gets hot and my hairs goes more curly !!
Hugs xxx

[rosie53]

Morning Ann, I'm also not on chemo "only letrozole and denosumab" I am constantly tired regardless of if I get a good night's sleep or not.....which is more often not! Denosumab can make you tired as can hormone treatment also don't forget this illness in its self is tiring too! I'm 49 and I quite honestly feel 109 some days! 😨 I'm finding that I am having to drag myself off the sofa to do the mundane jobs house work etc, this does get me down as I've always been the "always on the go" type of person!
It also gorgeous here yesterday too, lovely to have washing blowing on the line, I'm hoping now with spring hot on our heels it will kick start my energy levels!
Hugs Janette xxx

[Carolyn52]

Good morning Anne
Welcome to the zzz club ..like u I only take letrozole ..no denosumab as teeth probs and no chemo but I'm honestly tired from the minute I get up to bedtime ...one thing also ..I never nap during the day ..somehow that seems like giving in!!?
Most possible ..the Mets are zapping our energy levels somehow but spring is here so maybe some natural vit d will make us like little Duracell bunnies again !!
Hugs 🐰🐰🐰

[Anneemay]

Reading through the recent postings regarding tiredness, I can totally relate to this, although at the moment I am sleeping reasonably well during the night, apart from a couple of trips to the loo. So why I ask myself do I feel so tired during the day and have to motivate myself to get on with day to day tasks. By early afternoon I am yawning away but not able to sleep. I positively look forward to when I can crawl back into my bed around 10ish but sometimes earlier.

I am on 4 weekly Denosumab and Tamoxifen so can't blame it on chemo. that some of you are having to deal with. My husband who is 7 years older has got more energy than me which is very frustrating, although he is understanding, I'm sure he doesn't fully appreciate the tiredness or general fatigue that I feel.

Well the sun was glorious yesterday and I manage a few hours tidying the garden which was therapeutic, although I ache a bit this morning, so I must learn to pace myself in future. Ann xx

[Pippin]

Hi all

Trivial, I know for a Friday night, but, does anyone else ever feel too hot and too cold both at the same time? Weird. Is it just me? (The temp thing I mean - cos already know I'm weird and unique). Even with stage 4 BC and limping arround on crutches it's the little things that bug you. Central heating on, off, on, - discarded cardigans everywhere except when you suddenly want one, ice cream and ice-lollies' store depleted.

No sign of tiredness yet but then did have two naps during the day.  

Panicked a bit last Friday, could hardly walk at all so got X-rayed and reviewed by onc. It was Friday afternoon and everyone clearly wanted to get home, my pathetic struggles at walking quickly led everyone to put me in a wheel chair and it seemed they pushed me round so fast I had to cling on and have felt less fearful at the fun fair. All very efficient though like when you go to the supermarket just before closing

and you get served super-quick.

Pippin

[stresshead]

Kirky, fantastic news....not only stable but shrinkage as well...you lucky lucky girl, lets hope it continues that way.

I have noticed lately that i too cant seem to stay awake which worries me because i remember my mum towards the end just wanting to sleep all the time. I seem to go through phases when i cant sleep at night at all, then i sleep fitfully then i seem to sleep well but am still kn****ered. I have never really slept in the day but find i can drop off at any time. I am hoping that as the better weather comes i will feel like doing more and the tiredness will go....just wish it would hurry up!!. x

[Carolyn52]

Hello FF
Welcome to my normal world of activity at night ..but the last two weeks things have changed and I am sleeping for England..it's nice but worrying at the same time.
My best sleep is 6am to 9am but I'm lucky I'm retired and don't have to rush in the morning's !!
Try to do the A to Z of something in your head ..names, tv programmes or cars ...I usually fall asleep through boredom !!!!Ha ha.
It's gorgeous spring like weather here today ..washing machine being kept busy and washing hanging outdoors !! Sons dog laying out in sunshine topping up his tan too !!
Hugs Carolyn xxxx

[funnyface]

Hoot, hoot to my night owl friends! Why oh why can I not hold my head up when I'm down stairs watching TV. Get up go to bed and play the ho hum when am I going to go to sleep game! Then just as I'm getting sleepy I have to go to the loo! Now, time to try sleeping again. Finally asleep but never sleep more than 4 hours at the most if I'm lucky. Usually more like 2 hours! Ok wide awake I might as well do my morning exercises. Hubby wakes up to use loo. He wants to know wth am I doing exercising at 2 in the morning? Thinks I've lost it! Time to try and sleep again. Can't tell you how many times a night I wake up and hit the snooze button on the radio to play another hour. Hubby says hat do you do turn the radio on all night it never shuts off. I said no it's just me waking up and turning it back on.Alarm goes off for work! I'm ready to sleep, now! Grrrrrrr!  Hope you all sleep tight tonight! FF

[funnyface]

Kirby, Enjoy planning a nice get away! Yahoo on Stable Mable! She is awesome! FF

[funnyface]

Janette, My doctor bag has a little bottle in it for medicinal purpose! Possibly a heating pad too! Feel better soon! FF

[Moijan]

The bone mets thread,

it makes me shake ---

i have to laugh, I have to quake,

crammed with 'knickers', jokes and 'chocs'

the conversation always rocks...

Barton comes up with the cuddles - 

whilst Carolyn has us all in 'puddles' xx

Anon

[rosie53]

Great news Kirky, get that holiday booked!
Hugs Janette xxx

[Carolyn52]

Kirky
Whoop whoop for great scan results ...hopefully you will find some energy now to celebrate !! 👍👍
Jeanette
Hoping your aches and pains are a bit better with some rest .
Carolyn xxx

[Barton]

Sorry to read about your extra pain, Janette - Nurse Barton's second opinion is the same as Nurse Carolyn's! Chocolate and lots of rest!

Hugs. Barton.x

[Barton]

Oh well done, Kirky! Excellent news - it cheers us all up, not just you! At least you can relax a bit now for a while! It's the most worrying thing, isn't it, waiting for the results! Anyway, long may it continue.

Hugs. Barton.x

Ps - even shrinkage! Brilliant!

[kirky_68]

Well, all good on my scan thank goodness, mainly stable Mabel with a few bits of shrinkage. PJs back on and a long snooze after a few wakeful nights worrying. Then round 14 of Cape! Going to book my hols as well now I've got my results.

Hope everyone is OK and lots of hugs to anyone waiting test results (and everyone else too of course).

[Carolyn52]

Jeanette
Nurse Carolyn recommends a comfy place on sofa in joggers ( tight jeans hurt more) a large bar of choc and a large mug of tea and a chic flick DVD or stupid daytime tv and don't feel guilty about the dust, pile of ironing or dishes in the sink !!!
Sending hugs xx🍫👍☕🍨

[rosie53]

Well the painful hip and leg has got the better of me today, just had to come home from work, really didn't have the patience to be in there today!.....hate this flaming disease!
Hugs Janette xxx

[Carolyn52]

Hello kirky
You have a good excuse for being tired ..you are a " cape crusader" and its a big side effect of it ! Just let your body tell you when to rest ..it knows best !!
Jeanette and I are only letrozole girls and have no excuse !! But Jeanette you might be right as I haven't had denosumab for eight weeks because of my teeth problems but I'm not sure whether I want it until I'm sure the jaw thing isn't my problem ..I want to see Maxx fax dentist first before I go back on it
Xxxxxx.

[bonariensis]

Hi Pippin,

Yes it's lonely in the middle of the night and things keep going round and round and getting worse. Advice seems to be not to lie there fretting but to do something like reading. But I usually feel too tired to do this. I find listening to music can be comforting and you don't need to turn the light on. I usually crash out at bedtime but it doesn't last long. Tonight think of all the people who will be sharing your wakefulness. We will be there with you. Hugs B xx

[kirky_68]

Hi all so glad it's not just me. I have been having long afternoon naps but feeling no better for them. ONC just keeps saying excercise which is easy for her to say. Piling on the pounds as the only time I seem to go out is to meet up for lunch or coffee and cake!!

Get my latest scan results this morning and am absolutely bricking it - convinced myself the cape has stopped working which has certainly added to my sleepless or nightmare filled nights and lazy days.

Ah well, best get out of these pjs and make a shape.

Paula

[rosie53]

Morning Carolyn, it's horrible isn't it!
I've also been getting a lot more pain /achey in my hip and femur, I'm wondering if it's to do with the fact my onc has changed me to 8 weekly denosumab instead of 4 weekly?? If this continues I'm going to ask to be put back to 4 weekly when I next see her in May! This pain is getting me down now and also that's contributing to my sleepless nights as I cannot get comfortable.
Hugs Janette xxx

[Carolyn52]

Hello Jeanette
Snap ..Im the same with tiredness too ..this last few weeks on average I go to bed at ten ish and don't get up until ten ish the next day ..that's twelve hours !!
Sometimes I think I have been abducted by aliens during the night and been partying ..hence the tiredness !!
Hugs xxx

[rosie53]

Hi Pippin, I hope you managed to doze off at point.
I'm also really struggling with tiredness at the moment, constantly sooo tired, how can you be so tired then not be able to sleep???? Last night I went to bed at around 8.30 because I felt so rubbish and I actually did sleep all night but this i feel awful, still just as tired with a really heavy head.....think I've had too much sleep feel about 90.....You can't win!
Hugs Janette xxx

[Pippin]

Hi everyone

Can't seem to get through most days without a long nap, then not tired at bedtime hence the middle of the night post. Can't blame steroids or painkillers as not taking any. It's lonely here!

Pippin

[funnyface]

Hi ladies, I found my tumor while in Disney World on vacation. My breast started to leak blood and I was in the shower and found the lump. I was there with my two youngest at the time. Hubby was in the keys with oldest son and boy scouts sailing. They had dropped me off and were coming back for me. I got home went through all my treatment and surgery. No nodes involved! Oncologist said I didn't need radiation or tamoxifen. I didn't know much about BC and so I figured oncologist knew what he was doing. Fast forward 10 years and I'm coughing up phlegm like crazy, so bad I'm vomiting from it. Cancr set up camp in lungs. I asked oncologist what my original breast cancer was? His reply was he didn't know it wasn't in my notes he would have to research it. Next visit he tells me I was ER +! I said shouldn't I have been in tamoxifen? His reply was that protocol at the time of my cancer and my age said  you could give it or not give it, but  at the time my mets were discovered if I had presented with primary he would have given it to me. I then went to surgeon for port placement and told her the story. She was furious! She said BS! She hit her fist on the table! She said I should have been given it and at the very least I should have been given the choice. Then she said, but no use in crying over spilt milk we can't change it now! FF

[Carolyn52]

Hello lyndyloo
Thanks for posting ..we all have the same sort of stories to tell at being overlooked.
I have always been a person that if I get pain ..take paracetamol ...if I bleed ..stick a plaster on it !! I put my hip pain down to old age for a long time !! Then doc dx sciatica and arthritus !! It was ages before I got a scan and the rest is history ...looking back its important to take things more seriously but then we would be at doc's everyday I suppose.
Hugs xxxxx

[LYNDYLOO]

Hi Moijhan and everyone. I still get annoyed with myself even though it is now nearly 8 years ago since diagnosis. For all the newbies this is what happened to me. Had the normal 3 yearly mammogram in Jan 2008 came back as normal. Like you I have still got that letter. Went to GP 3 weeks later with intention in side of breast.. GP would not examine me. I left it at that thinking I must be OK. Went back again July 2009 to GP by that time it was a lady doctor I saw who referred me to see a consultant. Had a mastectomy in the September then found out mine was lobular which as you say does not show up on mammograms in the early stages. Sent for bone and CT scan came back had bone mets. Had treament chemo etc. Sorry reply has been so long. Just thought I would give hope to everyone that I am still here. Linda

[Moijan]

Yes, everyone, like Lucy, I ended up changing hospitals after my bc was missed, the year before I found a huge lump! 

I had gone to them with a crease in my boob which I knew wasnt normal. However, I. Learned later that my bc was invisible on mammos...lobular is quite hard to find. The reason I changed was because when I decided to ask my cons. Why my  bc had been missed the previous year....he lost his temper with me!......

this was about 17 years ago........by the time I found the large lump....most of my armpit lymph nodes were cancerous and it had spread outside them into the armpit.

like you ladies,I was angry with myself for not going back, or checking more...I was just glad to be sent the letter that I still have ' dear ms x you will be pleased. To hear that no cancer was found, etc etc'

we have to go forward, no choice, otherwise we waste the time we do have. Not one second of agonising or self punishment will change the past.  I have been where you are...its tough,xxx

but make the very best of today

today  is really all that any one of us have. Xxx

hugs, Moijanxxx💚💚💚

[Lucy21]

Hello Doodles
I don't post very often but reading yours i felt i should .
I went through a very angry time after I had been diagnosed.
I was referred to my local hospital after finding a lump . I had the usual mammogram ultra sound etc . 4 days later diagnosed with "early stage breast cancer " or as they said . I was told by my Consultant that I was young fit and Healthy and he didn't see any reason why I wouldn't get through this ! He said it was curable and he's was there to help me ! I also was told it hasn't gone to my lymph nodes .
Everything seemed really positive . Secondary breast cancer never crossed my mind . I had my operation then after finding it in the lymph nodes I had a body scan and ct scan only to find I now had it i my liver and femur !
I too went through a very difficult time with the professionals involved ! Whilst I appreciated iim
Sure it wasn't intentional and he probably didn't know . I felt very let down and very angry with everything.This took a long time to get over . So much so that I had a second opinion somewhere else and decided to transfer my care there .
So I empathise with how you are feeling x
I

[PMOL]

Hi girls,

Doodles, Nicky is right.  Somehow we have to stop going through that blaming myself road.  I had BC in 2012, nothing on the nodes, only 4 chemos. Kept going to my checks, nothing strange, thought about asking for bone scans etc but they told me to be careful because you may end up having cancer through the radiation instead... in november i went to see my GP with back pain (but then i've always had back pain!) and told her about doing streches or exercise and she was happy with that- thought it would be posture as I sit at a desk all day.  After my mammogram in december and subsequent biopsy went to the gp again who said htat if it hadn't gotten better in a week she'd refer me for a bone scan.  That following monday I found out that the BC had come back and I was to have CT and bone scan and a masectomy in 2 wks.  Ended up not having the masectomy as they found mets in my spine and pelvis... I'm now doing hormone treatment and waiting for the next scan in 2/3 months time...

all of these nights, I've wondered whether I should have become a vegeterian, done more exercise, done less excercise, should I have cut dairy, should I should I should I...

I've come to realise that no matter what I've done or haven't done, this was going to happen anyway. Now all I do is pray that this treatment works and that I can live the next 20 yrs to see my girls become grown women and see their dreams come true. 

I'm not going to lie, it's hard. It's super hard. There are days that I just want to stay in bed and cry and feel extremely sorry for myself (which I have done by the way); or days when listening to my girls laughter brings joy and sadness at the same time; when feeling the warmth of the sun like it's the first time or when I just laugh at extremely inappropriate moments.  Days when just a simple hug reduces me to tears. Days when you receive messages that shoudl reduce you to tears but wonder how people can be so inconsiderate (someone telling me I didn't look too well in a picture whilst on holiday!).

the truth is that this new journey that we are on, it's not a simple walk in the park but a flippin rollercoaster that when you think you are coming to a point of acceptance, something else is thrown your way.

much love & hugs xxxxxxxxxxxxxxx

[Moijan]

Stresshead, was wondering how you are as havent seen any posts for a while.

how lovely to hear from you xxx

Moijanxx

[funnyface]

Carolyn the tea sounds soothing...hope it keeps helping! FF

[stresshead]

nicky, sorry to hear you jave been so poorly but glad that you are out of hospital and hopefully 'on the mend'.

FF...nice to have you back, even if it was with such horrific stories. Hope the lady is doing ok and that your mind is finding some piece now the scumbag is off the streets.

Doodles...please dont beat yourself up..its not your fault.

I was the opposite to you...i reported a lump 2 years on from my primary in the January and no one did anything bout it until July when it turned out the sebaceous cyst they though i had was SBC in the skin (and now bones nd pleura). I was so angry but came to realise that it wouldnt change anything. I used to beat myself up with 'if only i had been more forceful and insisted on a biopsy' but as you say, thats their job. I believed my GP, onc and breast surgeon. If only i hadnt!!! I have come to realise though. as you will, that none of it is your fault. Try and channel your energies into resisting this ***** disease. We are all here to help and support. xx

[Moijan]

Hi Nicky
Hope you feel better.... an a bit nakerred today, so snatching some extra sleep now

Xx

[rosie53]

Oops sorry that post went twice! 

X

[rosie53]

Hi Nicky, sorry to hear you have been in hospital but glad your now feeling better, flu is rotten (even more so when you are dealing with other health issues!) Doodles, hope you've managed to get some sleep! Us ladies on here all totally get where your coming from, we have all been there! Like you my primary (2007) was low grade (1) no chemo and was told chances of returning were very slim, then in Feb 2014 after months of complaining of hip pain and being treated for sciatica it was discovered I had mets in hips ribs and spine! I didn't even know you could get breast cancer in your bones! Anyway here I am living with cancer but getting on with life, not saying it has been easy, there's been tears, anger "why me" days but my new "best friend" letrozole is keeping me stable.....and long may it last!! Take care hugs Janette xxxx

[rosie53]

Hi Nicky, sorry to hear you have been in hospital but glad your now feeling better, flu is rotten (even more so when you are dealing with other health issues!) Doodles, hope you've managed to get some sleep! Us ladies on here all totally get where your coming from, we have all been there! Like you my primary (2007) was low grade (1) no chemo and was told chances of returning were very slim, then in Feb 2014 after months of complaining of hip pain and being treated for sciatica it was discovered I had mets in hips ribs and spine! I didn't even know you could get breast cancer in your bones! Anyway here I am living with cancer but getting on with life, not saying it has been easy, there's been tears, anger "why me" days but my new "best friend" letrozole is keeping me stable.....and long may it last!! Take care hugs Janette xxxx

[bonariensis]

Hi Nicky
Your last post is the best thing i have read about SBC, I shall keep it somewhere where I can read it from time to time. Even after 18 months I am occasionally tempted to stray into 'what if ' territory. But it does makes me angry to hear of the experiences of women whose symptoms and concerns have been dismissed by doctors for months or years. Got to go, grandchildren are squabbling in my bed!

love to all B xx

[Moijan]

Hi Doodles,

yes I agree with what Carolyn and Nicky have said....its not useful to blame ourselves...I went thru something similar and have pm'd you.

hugs,Moijanx

[Doodles123]

Thank you so much Carolyn & Nicky for your comments.
Angela

[Carolyn52]

Hello ladies
Hope everyone is sort of ok .
Yesterday I bought some peppermint tea bags in the hope of giving up Rennie type indigestion tablets ...well I did nothing but wee for two hours and the good bit ..when I went to bed later I slept for eight hours with no twice nightly tinkle trips to the little girls room ..a real unusual thing for me ..so thought I would pass on the tip ...they are caffeine free too.
Hope it helps ..might not but worth a try and no Rennie tablets have passed my lips for a whole day !!!
Hugs Carolyn xxx

[nicky08]

Hi doodles

As Carolyn has said please do not imagine for one minute this is anything you could have stopped. Breast cancer in particular is a very clever disease and will always be in remission, whatever your oncologist might say when you have completed your treatment for primary BC. As of yet there is no test to predict whose BC will return and whose will stay in remission. The majority of BC does stay in remission and that is what we all hope for when we have completed our initial treatment. However, like you mine was low grade (2 but nearer to 1) no lymph involvement and something like a 95% chance I would be here in 5 years (which is all the oncologists can tell you at present). Well, they were right about that, however by then I had bone mets! I used to think the whole 'what ifs' ie should I have had chemo, should I have had a mastectomy - both of which I didn't have due to the original pathology and also how small my lump was. However once I had to join the secondaries part of this forum in 2008 I realised it didn't matter what I had done or not had done as BC returns to whoever it is going to return to, whatever their initial treatment was, I just needed to read their stories on here to realise that was the case. I am glad that I didn't spend the 5 years between primary and secondary diagnoses beating my self up and worrying all the time that it was going to come back - that would definitely have been a waste of time for me. But as it had unfortunately come back I had to deal with it and this forum gave me the boost I needed to realise that ladies live for many, many years with mets, particularly with bone mets and, if yours behave in a similar way to mine (being low grade) they tend to respond well to treatment and don't suddenly become more aggressive. It is a very difficult time for you, as we all know too well as we have been there as well, so take time to accept what has happened, don't blame anyone for the diagnosis but accept that your bone mets will now get treated and stopped in their tracks. It takes time to adjust as it is such a shock especially if you have no inkling, as I did, of any particular aches and pains. However once a treatment plan is in place we all seem to be able to cope better, it's not easy but over time as you begin to live with SBC you realise you can continue (in most cases) doing exactly what you were doing before.  If you find you are not sleeping well or coping well at this time is is also worth speaking to your GP or a trained counsellor, something that some of the ladies on here have done.

Nicky x

[Carolyn52]

Hello doodles
I'm so sorry u are giving yourself a hard time but you must stop blaming yourself ..bone Mets are very clever and don't always jump up and say " hi here we are" ..most of us here have been overlooked with pains before being dx ...we put a lot of aches and pains down to old age or over doing some gardening etc ..most times they are but a few of us are unlucky ...
All you can do is look forward and focus on the treatment plan that will be put in place for you ....try to keep busy with nice things in the meantime .
Hugs Carolyn xxx