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Bone mets - please join in

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Re: Bone mets - please join in

Good morning ladies, Carolyn it’s so lovely how everyone has shown you so much love and support!
That is what I love about this forum, it doesn’t matter if you haven’t posted for months, all the lovely ladies jump on with caring words, advice and support.
Even though I have already PMend you I felt needed to join everyone with my support for you.
You are made of strong stuff and are going to kick these intruders into next week!!
Hugs Janette xx
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Barton it's no secret I like a G&T but I had no idea my iPad was keeping tabs on my habit too!! 🍸🍸😂😂

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I'm not the best with technology either but we all run when hubby asks for help. Jobey he is a carpenter too. Built our house.

 

Hello Barton, Ramade, Renee, and Red Riding hood! I've seen post from all of you but currently am falling asleep and can't remember what you said. I took 50 mg of benadryl. Good night! 

 

Carolyn we do time change here to but it was 2 weeks ago. 

 

FF

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Hello Carolyn. You know how brave I think you are, but isn't it wonderful how everyone has rallied around to perk you up and offer such amazing support and tips, etc? This Forum is so incredibly friendly and comforting.

 

I too have a cleaner - I couldn't manage any more with hoovering, etc. I also take my clean washing out to be ironed as I can't do it with my back. You will wish you had succumbed to a cleaner years ago! I found out the other day that my lady is 77! She is way fitter than I am!

 

 

Love and hugs. Barton.x

 

Ps Jobey - I laughed when I read that about your technology knowing your preference for gin!

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Mikes the same, hates technology! He's a self employed builder so has had to teach himself basics so he can raise quotes and invoices but it's very basic! He can build a house but a smart phone leaves him having a nervous break down , he says his hands are too big for all this touch screen rubbish! 💻🖐😂

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Oh no ..my hubs is completely anti technic ..doesn't use anything ..I dread him trying to record on sky box ..never gets it right! His mobile phone is a senior one with big buttons and a. ..torch for when he has a few pints and can't find the lock for his key when he gets home! ! Bless ..he's just made me a cuppa xxxx
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Maybe it autocorrected to something more risqué! 🤔 Hubby just bought a new laptop so will be plenty of **bleeping ** going on here later when he attempts to set it up! Thank god youngest son is home tonight , always knew there was a reason we had kids! 😂

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Yes Carolyn your spot on! And tubs full of old phone chargers and cables for god knows what! 

Good to know we all do it though 😜 Having Chinese tonight so will be making sure those tubs get chucked out 😂

 

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Don't know why I got bleeped. Only typed black plastic sack !!
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Hiya jobey
Bet you cleared out a load of washed out plastic boxes takeaway Chinese comes in ..I had mountains of them when I last cleared. .why? Then there's tupper ware type stuff with no lids etc etc !
Then the cupboard with kitchen gadgets we never use !!
**bleep** sack and off to the tip for you later xxx
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I'd come and do your cleaning Carolyn if I lived a bit closer!! I decided it would be a good idea to clear out some kitchen cupboards this morning , now half way through with a table full of junk I have no idea what to do with so I've walked away with a coffee and gone in to another room so I don't have to look at it for 10 mins! 🙈

 

My iPad auto corrects every word I type beginning with G to Gin 😂🍸 clearly I have a problem even my technology knows about 😜

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I have a phone number for a cleaner. .a lady that lives in the area and works for herself so will sort that out for next week !
Never thought it would come to this but it seems I'm not alone with struggling with cleaning.
I don't have a breast care nurse either ...

More rain here today ...surely we must be running out of rain /snow by now ...sunshine and vitamin D needed for us all but hey hoo ..clocks change tonight so nice light evenings again.

Hugs xxx
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I have a cleaning lady. She's a friend  She only comes for about 1 1/2 hours a week but but it keeps the crud at bay at ground level. . She has endometriosis. I feel I ought to be cleaning for her but she needs the money. She also milks cows and had done the milking before she came to me this week. I have lived a very easy life by comparison.

 

I dicovered I didn't have a breast care nurse any more this week. She must have left. Not that it makes much difference because they are over in the breast care unit and you never see them. There's never a nurse around at onc appointments. The best bet is talking to a nurse at the chemo unit when you go if they've got time.

 

Bon xxx

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I've just acquired a cleaning lady for the first time in my life, hubby has been wonderful but we have also been coping with my elderly parents and their house and it all got too much. One day last week the cleaner came for the first time, I was out, and when I got home the whole house was sparkling especially the kitchen floor. I'm the last person to care about housework but it was wonderful!

Wendy I don't know about other chemos in pill form but I'm on capecitabine and it's very doable, not at all like IV chemo. Definitely no hair loss, I was worried because mine is still only in the process of growing back after fec t, but the cape hasn't affected it at all.
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hi ladies, i thought i might tell you all what i have learned so far with this tenacious disease.

One, by putting money aside each week for a really good cleaning lady, i feel so much better seeing a lovely house and don't worry that,back on chemo again, i can't pic things up so easily. Also, as we all know and has been discussed, men don't see mess and dirt in the same way we do, so now i feel totally relaxed when he lets things spill down the kitchen cupboard fronts and don't have to say anything.

Two, now and then ask for an mri scan. My ct scans go along merrily saying no change then an mri done two weeks later shows up disease not seen by ct.

Three, if your hospital don't have breasr care nurses, go straight to your local hospice, show them how upset you are by total lack of support and they will probably be very kind and helpful.

love to all

from a bald again

ramade xxxx

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A cleaning lady would be wonderful. If I had one it would force me to keep my house cleaner to start with. I probably wouldn't let anything for her to do. My hubby can do a duvet cover, laundry and operate the sewing machine. He has patched his carpenter jeans before. Now when it comes to picking up and throwing junk away, he is impossible!!  But he Is excellent at TCL. He would have made a good nurse!

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Carolyn.......well, thank goodness you are back! The bone thread is really busy again! Well done! It has been a bit quiet of late. It is so good to see all the names and hear how you are getting on. There is so much sharing and support here. 

 

The days are getting longer. Best wishes to everyone!

 

mo

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Hello Wendy

I'm sorry you have worked your way through the hormones so quickly ..when I look back I have had it easy for over 2 years ..a little letrozole pill a day and a little jab with bone juice every 6 weeks so now I have to put my big girl pants on ..grow up and face the next stage ..
Oncologist says there are several chemos in pill form now so u should be ok with hair loss etc.
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Carolyn nice to have you back and wishing you well with your new treatment. I am 1yr in now and 2 treatments on hormone tablets not worked well so Onc said Chemo in some shape or form next option. Dreading Tues which is my scan results meeting but it is people like you and the other lovely ladies in here keep me going . Love to all Wendy
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Carolyn I don't know a man alive who can change a duvet cover, shut a drawer, hang a towel up .... the list is endless! Bloody brilliant idea to get yourself a cleaner, I'm sure you will have no resistance from hubby after the duvet episode! 😜Xx

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Well ladies

I'm looking for a school to teach hubby how to change a duvet cover !! For the first time in 45 years I had to ask for his help to put clean bedding and a duvet cover on ...well he turned into a 2 year old ..not a clue ..even how to match the poppers up. Didn't understand the logic of a square duvet in a square duvet cover even
Oh just thought .. I'll get a cleaner !!

Hugs xxxx
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Hello still here
How nice to hear from you ..I'm so glad your trial drugs are doing so well for you but surely if the trial stops ..they will let u keep taking the same drugs as you have been stable on them.
Hugs xx
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Hello rosie

I was supposed to see my oncologist 2 weeks ago for results but I had to cancel as I had a tummy bug and then wait 2 more weeks to see him as he was on holiday .

I do feel a bit miffed that this has all happened since November when I had a scan last. I would have thought on seeing these new things on scan I would have been seen earlier and then new treatment could have started quicker.
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Carolyn, it's lovely to hear from you again and I am so sorry that your results were concerning, as you say we sit in a comfort zone whilst a treatment is working and feel panicked when there is change.

 

I just wanted to say that we are here for you, I've even come back on the forum after weeks away! You have always been so supportive and uplifting to others so sit back and take strength from us for a while.

 

You have a raft of treatments still available to you and the chances are that they will work well, you are still a treatment "newbie" really so take heart.I am still squeezing the last few weeks out of my trial, nearly 2 years on and Cape lasted me 2 1/2 years as well.

 

FF, I know what you mean about feeling anxious the longer we work through these treatments, it's emotionally exhausting isn't it but glad that you are posting. Take care everyone, some warm weather would help....a lot.....

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Can I just ask why you had to wait 6 weeks for results ? X

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Rosie
That's very inspiring about your news with the e and e regime. ...oncologist said that the average success rate was about 8 months but of course everyone is different. ..he also said that he was surprised just letrozole had worked for so long on my extensive bone mets !! He was only expected about a year but it did two and half years for me.
Hugs xx
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Thank you all for your lovely comments and support ...think we all get in a comfort zone when we are stable for a while and then when it changes it's such a shock.
Hugs xxx
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Sorry for duplicate msg, it said the other one hadn't gone !, xx

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Carolyn I am so sorry for your crappy results.  Now hold our hands and let us send you so much love, it's easy to get forget after such a long time stable that the little pests do move and spread and very quickly too.  

I just wanted to say that I am on Exemestane and after 3 months my onc said it wasn't working.  My husband questioned was 3months long enough so the onc agreed to give me 2 more months.  Had scan last week, had results 3 hours later and whilst it showed blood clots on my lungs it also showed that the everything, especially liver was shrinking.  Please don't be afraid to disagree Carolyn, if I hadn't stood my ground I would be back on chemo by now.  X

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Hi Carolyn,  I am so sorry that you received such a crappy scan result, this bloody disease has no heart does it !!  I was on Exemestane from August until December and after a scan the onc said it wasn't working so he was going to change me to cape.  My husband questioned whether or not 3 months was long enough for it to be effective and the onc said he would give me 2 more months.  I had a scan last week, got called back to the hospital 3 hours later.  Everything had either gone or shrunk, especially the liver, so Carolyn please question if 3months is long enough when you go back.   Come on lovely lady take our hands and lift yourself up.  Xx

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so sorry to hear your news Carolyn.Try to hold on to the fact that there are a lot more possible treatments. It's always a shock and a big feeling of upheaval. Some do very well on the e/e regime.

big hugs to you

ramade xx

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Nicky, Thanks for asking. I haven't been posting much either bc I've had So many medical appointments and new job . I felt very overwhelmed with things. Not sleeping doesn't help.  Plus 12 1/2 years of this sounds great in one hand and in the other hand it's depressing. I've known So many ladies who have left us and my anxiety gets exhausting after all this time. Otherwise I'm OK. FF

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Hi Carolyn

Its lovely to have the chocolate teapot lady back 😉🍫 but obviously not for the reason you have said. As you have supported us and welcomed all the newbies so well in the past we will be supporting you. It’s a pain in the a*** when we learn of progression so give yourself and your family time to adjust and to get to grips with new treatment. Take each moment as it comes and once you get over the shock make sure you get out and enjoy yourself - especially with the new babies and your other grandchildren.

Take care

Nicky xx

ps good to see you posting as well FF, have missed you as well,  how are you doing?

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hi carolyn,

so sorry to hear your news ,but i have not been on this forum either for quite a while ,as various problems to sort out which hopefully are coming togetehr now,so should be back shortly.

we honestly just never know from day to day or in our case scan to scan ,but you will kick those little blighters with every being in your body,i know you will as you are one strong lady and an inspiration to us all.

hope to be back soon 

love reneexx

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Hi Carolyn

It's good to have you back but really sorry your news is not so good. We are all holding your hand, it's time for us to look after you. You've always downplayed your own problems and supported us all, now it's time for us to look after you.

Bon x

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 Welcome back Carolyn! You've been missed! Ff is right.......get those babies over for bouncing and cuddles.

 

mo                     xxxxxxxxxxxx

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Carolyn, We will hold your hand and help you kick so next scan you can toot your horn! Now, get busy and schedule a nanny day with the twins. Their cute smiles and giggles will surely make you smile! DR

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Oh Carolyn what an awful shock for you I really don't know what to say 😕 I know you will pick yourself up though and deal with it, you are such a tonic across the forum and so don't deserve this but as we all know there's not a damn thing we can do other than deal with it! You know you are never far from a shoulder to lean on as and when you need one Xx Jo 

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Hi Carolyn, so sorry about your news, you must be feeling awfulxxx however, your treatment plan sounds well thoughT out and hopefully...at your next scan....things will have improvedxxx

 

lots of love🙏🤗

 

Moijanxx

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Carolyn, what a pig of a scan result. You go out there and kick those little blighters with everything you've got! Big hugs.xx

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Well, you needed those scan results like a hole in the head, Carolyn, hopefully the new treatment will deal with the little blighters.

Sending hugs

ann 💖

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Hello ladies

Apologises for my long absence but I needed to step away for a couple of reasons. Firstly a month ago I lost my daily e mail buddy after 2 years ..always thought she would outlive me but things happened quickly at the end.
I also had to wait 6 weeks for my scan results and yesterday I got the kick in the teeth I didn't expect ..I now have liver , lungs and adrenal glands mets. .it seems the little blighters got fed up of eating my bones and wanted a warm soft place to party in.

I'm starting exmestance and everomus next week and if after 3 months it doesn't do much will go on vinerobine chemo pills ..

There have been plenty of tears but today I'm ready to give the little blighters a great big kick where it hurts ! Letrozole after two and half years has let me down ...never quite ready for progression.

Anyway I'm back ...to get on your nerves again.

Hugs xxx☺☺☺
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Hi Silver, they were found in late 2013, by accident at another hosp where I was having an ultrasound of my liver for a different reason. We are all different tho, and some of the ladies have had them for 10 years.

 

drugs are developing all the time...so take heart.

 

one of the big things we can do for ourselves is to tackle our diet......I realise everyone is aware of this xx and it’s hard on chemo when we feel so grotty.xx I do keep up with Chris Woollams on his charity website...Canceractive.......he has all the latest news on there.

 

What I also found very useful after initial diagnosis was to pick a choice and stay with it, could be anything, eg ramp up my exercise, or go dairy free, or  adopt the rainbow diet .......or. whatever appeals to you...just to  feel you are doing that one thing that you think might help. However, I’m not advocating anything drastic,esp whilst we are on Chemotherapy xx

 

love to you,Moijan😘🤗

 

have also pmd youx

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Hi dragoncarine,

 

You could not be more right wrt consultations. 15 mins. every 6 months. I attend at 2 hospitals under the  same trust.

 

I live on my own as I became divorced 10 years ago. I have been allotted a nurse, but as luck has it, we really do not see eye to eye, which means I'm paddling sowewhat solo.....

 

All good wishes,

 

silver...x

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Hello bon...( is it ok to address u, as such??)

 

Many thx for your reply. I did not know that about bone scans.

 

mmmmm, yes, I sometimes wonder about the cost of scanning. I'd prefer an MRI everytime.

 

I've been on this journey for 3 years, & I use my sense of humour as my shield, but just recently I'm feeling very flat about it. I call mine 'Max'.....in that hoping it'll reach a max.....not applicable, but hey ho.....

 

This is the 1st time I've reached out on a breast cancer forum.....

 

All good wishes,

silver...x

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Hello Moijan,Woman Happy

 

Many thx for your reply, especially as you have so much on your plate. May I ask, how long is it since 'they' found your secondary mets.?

 

I don't like CTs either and they are not as accurate as MRIs.

 

Hoping you have adequate support. Alternative therapy is so very helpful. I have my most favourite reflexologist......

 

All good wishes,

silver....x

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Hi Silverlining. It's coming up soon to a year since my secondary diagnosis (and 13 years since primary).

CT scan shows a bit of bone mets - but only the ones they can see on sternum & ribs - so doesn't include arms (or hands which are also currently concerning me). I am fortunate to live in Southampton near to a very good oncology unit. My oncologist is very good at explaining everything in ways I can understand. My family do not live in Uk but I have a very supportive partner.  Ask lots of questions when you see your oncologist, and if you can take someone with you - those have been the best bits of advice I've been given and it helps.

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Hi Silverlining

Sorry to hear you are in pain

Bone scans pick up any irregularities in your bones like arthritis, you need a CT or MRI scan to find out whether these are mets or not. I had bone mets picked up on a CT scan for something unrelated so I had a bone scan to find out the extent of the irregularities and then more CT scans to investigate what was picked up there.  After that I had a bone biopsy to determine what kind of cancer it was. As Moijan says MRI scans are preferable to CT scans as they don't involve radiation and I think they give more detailed information. Some people don't like them as they are longer and noisy. I think they cost more but they are worth having if the powers that be are willing to pay for them. (Bone scans involve radiation too of course).

 

I have mets in my pelvis and skull but haven't had a scan for almost a year now.

 

Keep in touch

Hugs Bon x

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Hi silver lining, you could request an mri....I have mets in my spine, pelvis, ribs collarbones etc...as it’s also in my liver they are now doing three monthly whole body mri’s, but you might find they can’t run to that...but certainly they gave me the reason that they wanted to monitor my bone mets as the reason for doing the mri’s

 

i must admit, I don’t like cts...although they are shorter, mris are not radiation...just magnets, why not ask them for one...just for reassurancexx

 

 

good luck with everything,

Moijanxx

 

oh, and you can have copies of your doctors letters, which will give you all the updates...but if you don’t want to have those...you have every right to ask about the bone mets.

 

i find my chiropractor has actually helped manage pain that I thought might be the cancer..but now I think those pains weren’t cancer as they’ve gone away..she found my muscles were very tight in all sorts of odd places and worked on them...which did the trick!

 

xxx🤗