Bone mets - please join in

[Corey45]

Hi im new to this site and looking for some support. I have read through some of these post and have been uplifted.I am 45yrs old and was diagnosed in may16 with IDC two lumps removed with immediate therapeutic mammoplasty.Went for results of op to be told no clear margins and both tumours were bigger than first thought and out of 5 nodes i had a speck in one. due to this i was given bone scan& ct scan then second op for clear margins. results of second op were clear margins and clear bone scan but ct scan showed something in the sacrum,then i had mri scan and they were still not sure so a pet scan followed. went to see oncologist for results to be told that i have secondary breast cancer a single 2cm spot in the sacrum but the rest of the body was clear at moment. it has left me and hubby blown away not to mention my 3 kids 14,12,& 9 . I have been put on tamoxifen because er+ and my oncologist is going to find out where i can have targeted rads. I will also have monthly injections of denosumab,no chemo yet.I was wondering if anybody else has started with one single met in this area. we are terrifed about the future and would love some support.

sarahx

[scratch]

Nicki had return of bc in 2013 when I had bones and peritoneal diagnosed..liver Mets diagnosed last November.and had docetaxol which only had small effect.then been on examsstene but ct show liver Mets progressed.thanks for your advice.xxsharon

[scratch]

Thanks to everyone for replying..i will ask for a liver biopsy when I go...just in case my receptors have changed..and see if she can offer anything.if not I will ask for second opinion..i may phone and ask for earlier appt..hardly a chance of that I think...thanks for all advice.take care everyone.sharon.❤

[Carolyn52]

Hello ladies.
Well I knew it ..got a mozzie bite this morning and hubby has just killed one in the lounge so off to buy everything possible to keep them away !!
Cant believe I slept eleven hours last nite without a pee or a flush. First time for ages
How are you all doing?
Xx

[Carolyn52]

Hello Sharon
So glad u have had some good advice from everyone here ..what lovely ladies.
Just tuning in to say ..Hugs and thinking of you.
xxxx

[Marie123]

Hi Sharon, so sorry to read your post. I don't know anything about liver mets, but when I recently discovered a lump I phoned and got an emergency app with an onc. It was not my regular onc , but they were very thorough and helpful. Please take care M xxx

[nicky08]

Hi sharon

So sorry to hear you have progression and also that I can't remember if you already had liver mets or whether your bone mets have now spread to the liver. My bone mets spread to my liver after 5 years on hormone treatment. I insisted on a liver biopsy, having read on this forum about receptor status changes. I'm glad I did as my HER2 status showed as having changed from nearly 10 years of being negative to now being positive. This has given me different treatments available which I wouldn't have been able to if I hadn't had the biopsy done. I would suggest that you contact your oncologists secretary saying that you need an appointment earlier than the scheduled one on 16th as its too long to wait for a change in treatment as far as you're concerned.  I know it's holiday season and that all the consultants in our hospital seem to take August off (grrrrrrrr!) but hopefully your appointment can be moved forward. Ask if a biopsy can be done.

If however you have had one done already I'm assuming it wouldn't have been too long ago therefore the results would probably be the same as current in terms of receptor status. In either case your oncologist should be able to put you onto another type of chemo, having seen from your postings that the hormone treatment hasn't been effective. Also it may be worth asking for a second opinion and travel to the nearest specialist cancer hospital. I'm in the south so I have been to The Marsden twice for second opinions but I know of The Christie further north and think that Sheffield has a specialist centre if you are closer to there. Your oncologist won't like it (mine was very huffy about it!) but you are entitled to it and it could open up other treatment options or even being considered for a trial of newer drugs or combination of drugs that aren't available locally.

Hope some of this info helps and sending lots of hugs your way as its a bummer when we get progression.

Nicky x

[rosie53]

Hi Sharon, sorry to hear about your results, can't really offer any advice on liver mets though. I know it's a few weeks off until you see your onc  (which is rubbish!!) I'm the same I usually have to wait around 4 wks it's ridiculous! But I would think he/she will have a treatment plan ready for you to start on. 

Stay strong sending you a big fat cyber ((((hug))))

Janette xxxx 

[julzd]

Sharon sorry to read your post hope your ok you would think if they were concerned they would get you straight in! I'm sure there will be other things you can have maybe you should see if you can have biyopsy done I've seen on other site people's mets changing love Julie ❤❤❤❤

[funnyface]

OH Sharon, It's so scary and disappointing when there is progression. I would think you should have more treatments, after reading your list! Hang in there and give your oncologist a call if you are worried. You shouldn't have to wait. Hugs! FF

[Carolyn52]

Oh Andrea . That sounds a really good idea ..I will look online tomorrow ..I always have my window open even in winter ..feel like I'm in a sealed box now.
I bought mozzie bracelets but gave them to my son for camping so must buy some more too.
Hugs xxx

[Chocolates]

Hi Sharon, so sorry to hear your news. I wonder when your last status check was. Is there a possibility your cancer type has changed. If you haven't had it done for a while an option might be to ask for another biopsy to see as if it has changed the chemos won't make any difference.

much love to you xxx

[andrea_carts]

Carolyn, I just cannot sleep with the windows closed so have them open the whole time. I've got insect screens though otherwise I'd be bitten to death! Now, When I saw insect screens, It's Velcro and net (from fly screen queen! Really cheap but does the job.

Feels cooler tonight though!

A X

[andrea_carts]

Oh Sharon, so sorry to hear your news, I'm not much use either as i don't know anything about liver mets treatment. Hopefully when you see onc she'll have a plan of what you can try.

Big hugs Andrea xxxx

[Carolyn52]

Oh Sharon..I know its hard but hopefully the more experienced ladies here will be reading and will know of other treatments that they have had after the basic stuff you have had.
It's a long wait for you now to see oncologist ..pity as you need an urgent appointment and new treatment.
Honestly .what am I like ..not much help really but I will be thinking about you and send you hugs xxx

[scratch]

Another winge ..3 ladies I spoke to at hospice told me they only ever wait a week before ct results.i always seem to wait about 4.once it was about six.too stressful..sharonx

[scratch]

Carolyn.i went to hospice today and iv got mouth thrush again ..so the McMillan nurse wrote me prescription.and said my ct results were in .i asked her to tell me so it was just a brief description.but she spent 45mins with me .more than hosp does.my oncologist appt is 16th.so I will know more then.i have had fec.capecitabine and recently docetaxol as chemos.and I have had five years tamoxifen.11 months letrozole and am currently on examestane which obviously hasn't worked..i dont know what the next option is or if there is one..xxsharon..

[Carolyn52]

Oh Sharon.
I'm so sorry to hear this as you have done the chemo recently too.
Is there another hormonal you can try ? Or what options do you have now ?
Has oncologist offered you other treatments or even a clinical trial with ibrance maybe.
Keep posting here ..we are all here to help as you must be feeling so downhearted .
Hope you have settled your daughter into her new flat and try not to over do things ..easy said I know.
Sending you mega hugs xxxxx

[scratch]

Hi all found out today that iv had progression in my liver Mets.normal bloods but Mets bigger and slight ascites.feel down .so obviously examastane hasn't helped me..😞 sharonx

[Carolyn52]

Oh ff
The treatments don't help us with the heat do they ?
I like September too although the darker nights are a pain. Usually I sleep with the Windows open ....but once we have rain after heat .the mozzies are about and they love me ..num num!!!☺☺

[funnyface]

Rainy, hot, and humid here! I think I'm ready for Autumn as long as it starts early and goes into winter. Not a fan of winter! Need to get out of here today! Going crazy!  FF

[Carolyn52]

Well waffles ..then you must do what a girl must do and splash the cash and shop!! 👠👜👗
Enjoy it and hopefully you will get some nice things.
I hate August . Hate the wasps and mozzies . After heavy rain last night ..had to keep Windows shut as the little uggers love me at night.
Hugs xxx

[Waffles]

Hi Carolyn,
Very muggy weather here and not very pleasant indoors, unless you have air conditioning. So , unfortunately, I'm forced to go out shopping today. Well that's my excuse anyway. 😁 xxx

[Carolyn52]

Good morning all.
Hope everyone is ok and enjoying .....the rain wellies and brollies dragged into use again.
Looks like tumble drier will b overworked again and the holiday makers all look so glum ...
Hugs xxx

[Carolyn52]

Hiya Barton.
Put the old stuff on gumtree ..inundated with replies . Put it all on too cheap I think. Tried to put a fair second hand price on.
Weather getting on my nerves as I was going to do a load of washing .never mind plants and grass need watering.
Hugs xx

[Barton]

Well, if it means you are happy Carolyn, I am happy to accept the blame!

Hugs.

Barton.x

[Carolyn52]

Hiya ladies
Well up early this morning ..so already on my second cup of coffee ..sat on decking ..no Sun but warm .
Hope everyone is coping ..know a lot of you are feeling poorly but keep eating chocolate and cake ..it won't cure you but hey hoo ..makes u feel better.
Xx☺

[bonariensis]

Hallo Artygirl Even with all the technology available it seems there can always be uncertainty. I had a bone biopsy taken from my pelvis last autumn and was already on exemestane because of what was probably my problem. But then in June my onc just happened to mention that the biopsy results had not been all that conclusive. An MRI scan showed I also have something in my skull and a tumour in a really inaccesible place below my brain which might be bc or something else but they can't tell because a biopsy would be too invasive. So we live with uncertainty. Anyway I went to the Port Eliot festival in Cornwall this weekend and had a great time 

[scratch]

Hi jultz glad youv got a nice holiday in.you deserve it yes its lovely to get hair back whatever colour and form it comes back in..it makes you feel normal somehow..some people handle hair loss better than me...wish they could find new meds that dont cause this side effect...anyway glad youv had a nice break.daughter and baby moving out tomorrow so a busy week for us..xxsharon

[Carolyn52]

Hi Barton.
Well I have impressed you .
I don't drink enough glad I'm not on cape ! Just not a thirsty person.
Hubs will cope with flat pack ..I just need ear plugs for the swearing !! Mind u its a lot to do ...large table and eight seater !! Bless him.
Just going to sell the old stuff now on gumtree.
It's your fault really ..loved your wooden stuff so much ..just had to have some new !!!
Xxxxx

[Barton]

Well done Carolyn, on several fronts: a.drinking a lot (really good for you!) and, b.buying new patio furniture (although I thought yours was lovely anyway), oh, and c.getting up late! A woman after my own heart!

Hugs. Barton.x

PS if hubs is fed-up of putting flat pack together, I can give you the names of two different people who would do a good job for you.

[Carolyn52]

Good morning ladies
Well how are we all today ? Got up late and we had wall to wall visitors and buckets of tea ..ouch my poor bladder .
Went out to get grandson new headphones for his games box and ended up buying new patio furniture !!!! It's all being delivered Saturday . Flat pack again ..🔨🔧.poor hubs . But I've told him every time he swears ..he has to put a £1 in the swear box ...probably be able to afford a very exotic holiday on the proceeds !
Enjoy yr day xxxx

[Carolyn52]

Oh ff
Didn't realise you were on steroids ..evil things ..hubby takes them a lot for his chest infections ..he balloons on them like the Michelin man and eat ..well he's like a human dustbin and his knees creak really bad !!
Hopefully you will start to recover from them soon.
Xxx

[Carolyn52]

Oh Barton ..he's not just a dog but a pampered pooch and only the bed will do !!
Thinking about a little nap but will try to stay awake til bed time tonight now !!
Hugs xx

[Barton]

Oh Carolyn, what are you like! Put the dog in the kitchen overnight, or the sitting room! You spoil him! Hope you get a better night tonight, or have had an afternoon nap.

Hugs, Barton.x

[artygirl2061]

Hi Funnyface
Not yet. I guess if MRI scan was inconclusive they might. Are MRIs ever inconclusive? All a bit of mystery to me who hasn't a scientific bone in her body!!
x

[funnyface]

Artygirl, I hope they figure it out soon. Did they biopsy it? I can remember when they biopsied my lung there was some confusion. They had to send it out for more staining, and it took a couple weeks. Good luck! FF

[artygirl2061]

Thanks Carolyn - good plan! X

[funnyface]

Stresshead, I'm OK! Just that bone met added to the confusion of why are my legs weak. I'm off prednisone now, so if that was part of the problem it's gone. If it's because of my knees and inactivity, I've begun some physical therapy to combat it. If it's the chemo, hoping the therapy  combat that too. Hoping to see a difference in strength in a few weeks. My energy is less without the steroid, but again counting on time and exercise to help that! Maybe no steroids and exercise will help the weight too! 

Bad day at work yesterday! Thankful it's Saturday! I work at a senior center. The senior center is a place for seniors to come hang out. It is open 9-3 MTWTF. There is fine art class, exercise, yoga, ti chi, dancing, bingo, poker, entertainment, etc. It Is always busy. Most of them are very sweet and lovely, but a few can be real pips! Enjoy your weekend ladies. I'm working on some ideas for a pirate murder mystery for the center!

[Carolyn52]

Artygirl
All the technology and some things are still in doubt so all you can do is wait and see.
Fingers crossed it won't be a met ..
It's good they are double checking and it sounds like you are in good hands.
In the meantime enjoy your weekend and try to relax!!

[artygirl2061]

Morning everyone
Really nice to read your chatty thread.
Have been really struggling since abnormal spot found on pelvis two weeks ago. Picked up on both bone scan and ct scan but inconclusive. An now awaiting results of an MRI. Assuming it is a met - ON seemed pessimistic although when we left her office said she 'was sitting on the fence'. Very confused and anxious. Anyone else had a similar scan experience. Thanks Ladies. X

[Carolyn52]

Morning ladies
Phew you are all awake bright and early today.
I've had a rubbish nights sleep ..if any.
Had sons dog for a sleepover ..the little sod has been on the fidget all night ..too hot I think. I got out three times to let him out ..he's scratched, farted and licked his man bits all night long !!
Think a little nap later will b involved .
Enjoy yr weekend everyone.
Xxx

[rosie53]

Good morning ladies, well it looks like it's shaping up to be a nice day here today!
Hi Julz, sounds like you had a lovely time in the lakes, it's my most favourite place to be! We were there a few weeks ago, we always stay in Bowness but we also have a ride into either Ambleside, Kendal or Lancaster. It's roughly around an hour and 20 minutes from Manchester so it's not too far to drive. Well done you for doing that climb, I bet you felt amazing afterwards!
Nicky, thanks for the PM tip.
Marie 123, hope you have a fab day at your daughters wedding, 👰you must post some pics!!
Well I slept rubbish last night! But at least the sun is shining so that should keep me going 😆
Hugs Janette xx

[julzd]

Hi everyone yeah the lakes is a beautiful place carolyn your right after the year on chemo it's been lovely to feel and do normal things I think having my hair back even though it's a bit fluffy and curly makes me feel loads better. My husbands been off work this week so it's been good having company and being able to go places thinking about Edinburgh today. Have a good weekend everyone ❤❤❤

[funnyface]

Wow Julz you are quite energetic! That's a lot of walking! You should be proud! FF

[funnyface]

Fantastic news Janette! I stayed at stable for many years! Long may it continue! FF

[LouBoo]

I love the Lake District Julzd - spent a couple of weeks in Ambleside a couple of years ago - the scenery and walks are stunning aren't they?

Happy weekends to everyone - may they be pain and worry free xxx

[Carolyn52]

Hiya jultz
Glad you have had a few days break away from routine and wow ..all that walking you did ..you are obviously feeling better after a very hard year of treatment .
Glad you have touched base with the gang as we get worried when you don't check in !!
Hugs xx☺☺☺