68594members
360756posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Highlighted
Member

Re: Bone mets - please join in

Yes nature is such a joy. We sat on the cliff and watched the seals today. It was wonderful.
Highlighted
Member

Re: Bone mets - please join in

Hi Anne,

 

Nature in my lil' garden plays a big part in my life. This year there has been a bumper 'crop' of bumble bees (my fav.) & butterflies, lots of different white ones, orange & brown & some gorgeous tiny light blue ones.....bliss....x

Highlighted
Member

Re: Bone mets - please join in

I seem to make a mess of posting and start a new thread rather than adding to this one! I am sending good thoughts from sunny Devon and hoping everyone is coping with their treatments. I don’t do any gardening and like to read your posts about yours x
Highlighted
Member

Re: Bone mets - please join in

Hi Rosie/Jannette

 

no offence at all,, on the contrary...I was pleased to see you shared your views, which I did feel were absolutely valid. I am of the opinion that  none of us, should be trying to influence others around to  our own viewpoint.      I too found the situation really hard as my drugs have not worked for a year now - and so the stats chat, even though they can’t be accurate - it hit me very hard. It Can be hard to stay positive at the 5 year mark!

 

I Personally feel it’s important that we do make our own choices...after all, whatever we do will have an outcome...good or other, Which we will have to live with... so it has to be our own choice.  would hate people to feel that a cc, or an ex professional(of which, sadly there are many on the forum) had expert knowledge  - we don’t - bc is a big minefield. And this forum is just here for support.

 

Nice to see you posting - moijanxx

Highlighted
Member

Re: Bone mets - please join in

hello JWD,

 

Gr8 to see u on t'other side. Drains are the pits!!

 

Wishing you oodles of get well wishes & the speediest of recoveries...

Hugs,

silver...xxx

 

Hello funnyface,

 

How goes it in P'vania?? A big hello from me...xx

Highlighted
Member

Re: Bone mets - please join in

Thank you FF. Take care.xx
Highlighted
Community Champion

Re: Bone mets - please join in

JWD, Glad the op went well.Now for a speedy recovery! FF

Highlighted
Community Champion

Re: Bone mets - please join in

Rosie/Janette, Happy to see you posting. I'm pleased but very cautious. I really don't believe or can't allow myself to believe it's dead! I haven't told anyone but you girls and my family.Time will tell. Thanks for the well wishes. FF

 

 

Highlighted
Member

Re: Bone mets - please join in

Hi silver. Thank you I've had the op this morning I was first on the list I'm a bit sore but it's doable. I'm stopping in overnight apparently I was incorrectly told at pre-op that I would be out on the same day. I've got 2 drains my breast nurse will see me in the morning..Take care.thanks again.xx
Highlighted
Member

Re: Bone mets - please join in

Hi ladies, I’ve not been on the forum for a good few weeks but I have to say I have truly missed my regular catch ups and info we all give to each other.
I was maybe a little “touchy” in my last post and I apologise if I offended anyone!!
Just want to say to Carolyn I am really sorry to hear that your last scan results weren’t too good, you take care my “cyber friend” and always know that we are all holding your hand.
FF, absolutely fantastic news for you, I bet you’re on cloud 9!!
Hugs to all Janette xx
Highlighted
Member

Re: Bone mets - please join in

oh....with me & gardens...the bigger the better but they are hard work, but always, always worth it. My forever garden is very small...a tiny patch in the front and a small area in the back where I have my beloved African hut!! Its sheer delight...

 

I know so lil' about all these drugs..is 'P' a tablet?

 

Owing to my tooth, I'll be coming off Denosumab for 8 weeks/more.....methinks this is a tad scary!!

 

xx

Highlighted
Member

Re: Bone mets - please join in

Thanks for that Silver. 😀

Great that your forever garden is bouncing back. 👍

I’m off to the chemo ward to pick up the first batch of my new drug palbociclib. Can’t wait to get started.

Maybe I’ll do a bit of weeding when I get back. I absolutely love my garden. It’s enormous so can be a bit overwhelming but it’s a great place to forget your troubles. X
Highlighted
Member

Re: Bone mets - please join in

hello f-the-fear,

 

Just popping in to say a lil' hello...I'm really enjoying this rain and my garden is loving it and perking up....have a good Monday....x

Highlighted
Member

Re: Bone mets - please join in

dear JWD,

 

Very many good wishes to u, today..xx

Highlighted
Community Manager

Re: Bone mets - please join in

Hi, 

 

It's lovely to read the kind messages to Carolyn in this thread. Sending you our best wishes too Carolyn.


A few earlier posts in the thread went against our Forum guidelines.These guidelines aim to keep the Breast Cancer Care forum a friendly, welcoming, supportive space for people affected by breast cancer.

 

A reminder you can read our Forum guidelines here.

 

Thanks,

Bridie

 

Breast Cancer Care 

Highlighted
Member

Re: Bone mets - please join in

I know we are in and out before you know it..
we haven't had rain yet but the wind has picked up and rain is forecast today but it is a little cooler thank God! Take care silver.xx
Highlighted
Member

Re: Bone mets - please join in

@ JWD,

 

It always amazes me how readily 'they' whisk us out of hosp. these days....

 

Thank goodness for the rain!

 

Bestest of luck to u....xx

Highlighted
Member

Re: Bone mets - please join in

Thank you Silver. They said it could be the same day if I'm done early enough so fingers crossed but will wait and see.xx
Highlighted
Member

Re: Bone mets - please join in

hi JWD,

 

I'm delighted to read your news.....& I'm wishing you all the very best for your op. on Monday. How long will u be in hosp.? Hugs.....

oh....& please call me silver....xx

Highlighted
Member

Re: Bone mets - please join in

Hello Silverlining
Breast nurse rang yesterday to say bone scan was clear so op will go ahead on Monday 30th July. I'm so relieved. I'll definitely have radiotherapy because I didn't have that first time round but unsure about chemo. I'll cross that bridge if and when I have too.thank you hope your doing ok.xx
Highlighted
Member

Re: Bone mets - please join in

Hi JWD,

 

Any news on your front??

 

x

Highlighted
Member

Re: Bone mets - please join in

 
Highlighted
Member

Re: Bone mets - please join in

Dearest Carolyn, I can't say any more than Nicky's words, thank you to the funniest, most upbeat and caring person on the forum, you and your family will be in my thoughts and prayers xxxx

Highlighted
Community Champion

Re: Bone mets - please join in

Dear Carolyn, what a shock to read your latest post, my heart goes out to you. I had thought you had been a bit quiet on the forum over the past few weeks but put it down to being busy elsewhere, in the real world. As the other ladies have said you have been such a wonderful friend on here to so many of us, we will miss your ‘as useful as a chocolate teapot’ expression. You have always brought a cheery start to the day (we log on and read at a similar time) which we will all miss. If you feel it is right please do come back on here, even if it’s only to read the messages of support. You will know that we, your friends, are holding you close. Now make sure you get on and spend that time with your family as they are the most important people for you.

Nicky 💖😘

Highlighted
Member

Re: Bone mets - please join in

Hi Maria,

 

I put my thinking cap on.....I've inflammatory arthritis so I'm also under a Consultant rheumatologist. There are 2 ways to attack pain of this sort....anti-inflammatories like Etiricoxib/ neuropathic drugs like Gabapentin...We should not have to suffer pain. I'm in flare at the mo' so u have my heartfelt sympathy....please seek professional advice...& take care..x

Highlighted
Member

Re: Bone mets - please join in

Hi Maria12

I'm sorry you are in so much pain. Having had severe back pain quite unconnected with cancer, I know how awful it can be. The fact that you recently had a bone scan and a ct scan should be reassuring, I have never had a lot of pain from the mets in my pelvis but I did have acute pain a while back because of too much strenuous gardening. I got some painkillers from my GP - that might be a good thing to do - and had arranged to see the onc but it began to improve before I got there so I never went. There's no harm in getting some painkillers and speaking to your bcn. She should be able to advise you what's best to do. It's lucky you have an onc appointment soon so will be able to talk to him/her.

 

Hope the pain eases.

Bon xx

Highlighted
Member

Re: Bone mets - please join in

Carolyn, you have been so supportive and given so much, all I can say is thank you. Sending love and hugs to you and your loved ones. Perhaps it will help them, and you, to know that you have really made a difference to this little community. Go in peace.xx
Highlighted
Member

Re: Bone mets - please join in

I have been lucky enough to meet Carolyn once or twice and she's just the same face to face as she is in her posts. I am sad that i won't be reading them any more.

We will all miss you and your support and will carry on holding you in our hearts and remembering how you brightened up our days. 

Bon xxx

Highlighted
Member

Re: Bone mets - please join in

Carolyn

You have been so supportive and kept us all from falling over I am genuinely upset at reading your news. I can only offer best wishes to you Wendy xx
Highlighted
Community Champion

Re: Bone mets - please join in

Zana, NED is no evidence of disease. 

Highlighted
Member

Re: Bone mets - please join in

So very sorry to hear this carolyn - I do not know you but as others have said your humorous posts have put a smile on my face. I hope you take comfort from the love and support of those close to you .
Sarah x
Highlighted
Member

Re: Bone mets - please join in

Didn't know you Carolyn but sad to hear your news. I wish you and your loved ones well. Take care❤
Highlighted
Member

Re: Bone mets - please join in

Sorry what’s the NED? I’m just learning all the abbreviations 😀
Highlighted
Member

Re: Bone mets - please join in

Oh Carolyn, my heart goes out to you. Wishing you all the best - it doesn't matter how long we get - we always need more time.

I hope the dreaded C is gentle with you.

All my love to you and your family

Paula xx

Highlighted
Member

Re: Bone mets - please join in

Carolyn.........we’ll miss you. But we are all still holding hands so maybe you will be dropping by to keep an eye on everyone!

 

Always thinking of you, Carolyn. You’ve given me a lot of laughs! But now it’s time to concentrate on Carolyn for a while. 

 

mo.      xxxxxxxxx

Highlighted
Member

Re: Bone mets - please join in

Thank you Nicky that was very useful info. I haven’t had anastrozole so will mention it. Love xxx
Highlighted
Community Champion

Re: Bone mets - please join in

Carolyn, We are here if you need us! Thanks for always finding a way to make us laugh! You always put a smile on my face! Your advice and humor will be missed. FF

Highlighted
Member

Re: Bone mets - please join in

I am very sorry to read your post Carolyn. I know you have been supportive to, and appreciated by, many ladies on here and believe from reading your posts that you will have that support from your family and friends. I wish you, and your loved ones, well. Kate x

Highlighted
Member

Re: Bone mets - please join in

I am so very sorry to hear this. I wish you strength as you del with this. You have offered advice and support to others. Thank you. Brace to share your news and I hope you receive good support
Highlighted
Member

Re: Bone mets - please join in

I can give you his answer to that one now...his opinion will definitely be no, but to check with your Oncologist. I think because the Onc is sort of in overall charge of us they kind of have to say that! That said my Onc says what did Max Fax say!!

..just to add, I will ask again even though in the past has said longer x

Highlighted
Member

Re: Bone mets - please join in

Hi Kate,

 

Actually I do have one question. Is 8 weeks off Denosumab either side of extraction sufficient? Many thx for your kindness....

silver...xx

Highlighted
Member

Re: Bone mets - please join in

Hi Silver, my dentist wouldn’t do the work on mine so I was referred to the dental surgeons, I was referring to when I had the first signs of infection when I said my dentist was useless, the dental surgeon was excellent. I have my Max Fax check up next week, and if it’s still the same surgeon he is lovely so if there’s anything you’d like me to ask him let me know and I will run it past him...he can only say no! Kate x

Highlighted
Member

Re: Bone mets - please join in

Silverlining thank you for your reply x
Highlighted
Member

Re: Bone mets - please join in

hi maria,

 

When I was Dxed I had mets in L&R pelvis but I was asymptomatic.....guess that's not really helpful.....x

Highlighted
Member

Re: Bone mets - please join in

Hi hope no one minds me jumping on post ,am looking for advice and scared tbh ..i was dx with tn in jan 17 had ec and pacs mx node clerance 7/12 ,rads ,to 3 places and 8 rounds of capcitabine which ended in march ..had clear ct and bone scan 5 weeks ago .i was wondering if any ladies have mets to there back or hips and if so how did you know .ive had slight back pain for few days, on monday night i turned over and felt like back had gone all fine tuesday morning then in afternoon i got this awful pain across my back hips and pelvis .i have quite high pain tolerance but this has floored me and had me in tears..today its a dull ache but mainly in hips area ..sorry for long post but does this sound bone met familiar any advice appriciated .would it be best to see gp or contact bcn im seeing onc in 2 weeks time .would this fall under the wait 2 weeks regime of wait snd see .thank you ladies
Highlighted
Member

Re: Bone mets - please join in

Hi Carolyn,

 

I just could not read & leave. Although I do not know you, I am sad to read your news, Take good care....xx

Highlighted
Member

Re: Bone mets - please join in

Hello ladies

I've thought long and hard about posting this but as I've been a regular here since October 2015 ..I thought I could be honest.

I saw my oncologist today with scan results and they are not what I wanted to hear. Over the years we have shared laughter, tears and good advice here but it's now time I said goodbye and focused on my family etc.

I wish you all the very best with your treatments and stay strong. ..remember my primary was 2004 and I have been living with secondaries for nearly 3 years so I have had a good innings ....

So goodbye lovely ladies xxxx🌷🌷🌷🌷🌷
Highlighted
Member

Re: Bone mets - please join in

hi kate 21,

 

The dental hospital want my dentist to do an X-ray b4 they see me......xx

Highlighted
Member

Re: Bone mets - please join in

Hello mermaid007.
I can't advise on meds as I am no expert yet. I too am been treated at Wolverhampton. I hope you get some help and advice. I think it's awful when certain treatments come down to funding it makes me so angry. Take care Sending love.xxx
Highlighted
Community Champion

Re: Bone mets - please join in

Hi mermaid, and welcome. 

Sounds like you have done incredibly well on the hormone treatments and so far avoiding chemo. In my experience (10+ years with bone mets) I have found 5 years seems to be about the maximum you might get out of one type of hormone treatment and quite often they all become less effective when they are 2nd, 3rd or further line treatments. You don’t mention anastrozole, I’m assuming you’ve not had it and although it is similar to letrozole I have managed to get a good few years out of both of these treatments, initially anastrozole for nearly 5 years and then a few years later about 18 months from letrozole. A lot of us hormone positive ladies seem to have a couple of hormone treatments then have to go onto chemo to knock everything back a bit if progression is shown on scans, although this isn’t the case with everyone especially if you ‘only’ have bone mets. It may be worth asking about anastrozole? Btw because you have already had exemestane on its own you wouldn’t be eligible to get evermolimus on the NHS, The NICE guidelines include it only if you have not had exemestane. Also if exemestane has stopped being effective I don’t hink your oncologist would expect it to work for any longer if you were able to add evermolimus into the mix ie if you funded it yourself.  It is worth getting your oncologist to ask about getting funding for faslodex, I’m currently on it and luckily my hospital trust had already agreed to fund it themselves before I had to ask about it.  Possibly you could ask if you can fund it yourself and find out the costs, obviously this would depend on whether you could afford it or not but as it’s a long established treatment the costs aren’t as high as some of the newer drugs. As to having chemo there are options that aren’t as harsh as you might think. Capecitabine is tablet form and is very effective, and Eribulin seems to be very effective for hormone positive BC although I seem to remember that you may not be able to have either if you haven’t had any form of chemo before, but the ‘rules’ may have changed.

Sorry I’m not much help but just wanted to mention anastrozole in particular.

Nicky xx