Great reasuring post Nicky! So many ladies here with bone mets and still living life to the full years and years on from diagnosis , awful of your oncologist to be so negative , yes it changes things but still very treatable for the majority and positivity from the team looking after you is vital!
You will pick yourself up and the stories across the forum will really help, this isn’t a place of constant gloom , so many strong determined ladies to talk to! Xx Jo
Ramade, Nicky, Jo - I don’t have to tell you how much your posts mean to me, I’m crying so much I can hardly see the keyboard so forgive any typos! But they are not the desperate tears I’ve been shedding lately, more relief at having some positive feedback, I am so sick of the doom and gloom I’ve been getting. I was going to write Xmas off this year but dammit I’m going to try to enjoy it. My love and thanks to you al xx
Morning dogsdinner
Welcome to the forum. You have come to the right place.
I was diagnoised with breast and bone mets in 2009. Had mastomy chemo and Rads. Had reconstruction 2012.
Sorry the oncologist was not good. I was fortunate when I got diagnosed the oncologist was upbeat and said if it was going to go anywhere that was the best place for it to go which was quite reassuring at the time.
Hope treatment goes well.
Linda
Dogs dinner
Welcome to our little family here on the forum …there is nothing much I can add but stay here and join in the threads as it’s a great help to have real people that understand.
In the meantime go for Xmas. .enjoy it and try not to overthink things too much …it’s hard especially in the night but once you focus on the treatment it will get easier.
Hugs xx
Hi dogsdinner, we’ve joined this group at the same time so it’s good to have someone to share with, although I had my primary three years ago.
Nicky thanks for your post. The onc said if it’s just the vertebrae then high intensity rads and/or surgery to remove the offending vertebrae. I’ve suffered with back pain for 30 years and really not keen on surgery.
They’ve put me back on hormones (, zoladex and exemestane) and mentioned the bisphosphonate which will start after christmas. If it’s more than one site then oral chemo 2 weeks on, 1 week off.
I told my children’s headteachers and heads of year yesterday. My son is in his gcse year so anxious that my treatment goes smoothly this year.
Whoever said live life to the full (or words to that effect) is absolutely right. I’ve gorged on pasta and chocolate today with not a care for the waistline which is really not the normal health conscious me! Also been ignoring the washing, cleaning, cooking etc (but that really is the normal me!!!)
Hi Dogsdinner, welcome to the boney mets thread, I think most of the other lovely ladies have pretty much said everything to reassure you.
I’m sure once you’re treatment starts you will become more positive, remember this disease is very individual and cannot be compared to anyone else, avoid “Mr Google” it’s inaccurate and outdated! As for your oncologist, they may be very good at treating this disease but when it comes to the emotional/mental side of it unfortunately most are pretty useless so don’t read to much into their “gloomy expression” do you have a bcn/MacMillan nurse you can speak to?
Failing that the ladies on here are very helpful and knowledgeable, I have learned more on this site than anywhere else!!
Take care, hugs Janette xx
Hi Ladies,
I’m unbelievably relieved to tell you that the lesions in my brain are not mets! I had to have numerous scans and referrals to specialist neurologists and they have finally said they are not concerned and think they could have just always been there and never would have been found had i not had the scans! They just want to scan me again in 3 months time to see what’s what.
I can’t remember if I said previously or not, but I am off the trial drug. It was making me too mentally unwell, so for now i am contuing with letrozole and my bone strengthener (which has been switched from zoladronic acid to denosumab becaue of my rubbish veins).
I hope everyone is doing as well as possible, I have missed you all!
Jelly xx
Morning jellytot
So pleased regarding scan results what a load of your mind.
Now you can look forward to Xmas.
Linda
Hello jellytot
Lovely to hear from you and a relief about the brain. Lots of us here are just on letrozole and denosumab and it’s quite easy treatment and for many keeps the little blighters under control for some time …
Enjoy feeling a bit better and Xmas xxxx
Fab news jellytot. Wonder if I’ll be that fortunate next week.
Fantastic news Jellytot!!!
Hugs Janette xx
Hi everyone and our new friends. Just wanted to add congrats Jellytot I know you have really been through it . I too had my scan result this week, was dreading due to new back pain and excruciating knee pain. The latter is keeping me awake but good news Onc said nothing new detected so hopefully letrozole , denusomab and zoladex are working. Early days but best Xmas present. Good luck to all of you who are waiting results. Fingers crossed for you all Wendy x
Hello Wendy
I’m on the same treatment as you …scan showed stable recently too …but a lot more pain lately too …think I need to see GP for some better painkillers. .paracetamol not doing much these days …
Don’t believe in the painful bones are healing ones either !!
Hugs xx
Hi Carolyn congrats on your stable result too. As you may remember I was diagnosed straight in at stage 4 in Feb following hip pain in Sep 16. Was on tamoxifen for 5 months and then I had a new met identified in Sept L5 so went back to radiotherapy and treatment changed to letrozole . However radio Onc said my report also suggested t3 and t5 so was sent for s bone scan and then chest X-ray. Finally got all clear on Tuesday but the point to my waffling is my Onc said could be referred pain and tablets could be causing knee pain. Funnyface often mentions this affect. Am on 60mg codeine 4 times a day and try to hold off taking more than 2. She has also suggested heat. I think every pain we get makes us worry but hopefully your gp can prescribe something stronger . Wendy x
Hi Wendy, your absolutely right there about every little pain we get is a worry, I have been pretty much pain free for some time now (apart from being a little achy from time to time) but this week out of the blue I have had horrible hip pain!..hence the “worry gremlins” are now starting to kick in, It’s not so much the pain i can’t deal with it’s the fact that it’s a constant reminder of the “big C”
Hugs Janette xx
Hiya nicky
Thanks for asking about the twins …they are 6 weeks old now …came home 4 weeks ago …and doing really well …sort of normal baby weights now. They are coming over this afternoon for squidly nanny cuddles. They are one pink and one blue !!
How is your little grandson doing ? They certainly create a distraction away from our little problems !
Hope u doing OK on exmestance …which must be easier than the chemo …read it’s a hormone that’s easier on the joints but harder on the tummy !!
Think I’m ready for Xmas now …apart from last minute food …
???
Hi, my bone Mets has now changed to skin Mets. Pls can anyone help with any information about skin Mets , Fullvestrant didn’t work. So I have to go back to chemo. If there is any suggestion it will be most helpful. Thanks Srilata
Hello. .there is a thread on skin mets under treatments section …there are lots of helpful tips there which might help …
Sorry to hear this and that fulvestrant hasent stopped the little blighters breaking through …
Hugs xx
Hello FF
Only 4 more sleeps to your back op …hope all the pre op tests are ok and it goes ahead …
By January. .you will be fit and well and doing the granny thing …pushing the buggy ( stroller) around showing off that little grand daughter !!
Hugs to everyone xxx
Àfternoon FF
Hope you get the go ahead for your operation as there is nothing worse than being on pain all the time.
Have they said how long you will be in hospital or what your recovery period is. Fingers crossed you will out of hospital and recovered enough to enjoy Xmas.
Linda