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Bone mets - please join in

Member

Re: Bone mets - please join in

Welcome to the new ladies, but sorry you have had to join us. You will find lots of very helpful people all over this Forum. Take advantage, and ask as many questions you need to.

 

Carolyn - good luck with the new garden furniture delivery. Good old hubby, putting it together for you! Say hello for me!

 

Hugs. Barton.x

Community Champion

Re: Bone mets - please join in

Hiya Jeanette
Like me you have been quiet for a few days .hope u r ok. My bone pains are gone and have been for a week but next week I'm due denosumab again !! So it all starts again for two weeks .
Took grandson ten miles down road to exmouth last nigh so he could spend a few bags of pennies in amusement arcade ..cant believe its top season for tourists ( yes we locals have to pay tourist prices too ) and they closed it at 6.30pm !! Surely if they stayed open later ..their profits would b better.
Anyway hubby has his six inch nails and hammer ready for new patio furniture being flat packed tomorrow !!
It's nice here ..not too hot and I'm enjoying coffee on Newly cleaned decking .
Hugs xx
Community Champion

Re: Bone mets - please join in

Hiya ladies
Welcome to the new ladies ..hope you have found the info and advice on the threads and from the ladies.
Secondaries are scary. .been there and got the tee shirt !!!
What we also have to remember too as everyone is different and some of us get different side effects etc.
Also, there are thousands of ladies living very normal lives with Mets that don't actually post here...
Hugs xxx
Member

Re: Bone mets - please join in

Hi Sarah, sorry you have had to join us. Understandably your in a scary place at the moment take time to take it all in and be gentle on yourself, once a treatment plan is in place for you things will settle down. My secondary dx was March  2014 and I totally wrote myself off! I have mets in my hips ribs and spine and at the moment I'm stable and living a relatively "normal" life still working part time and booking hols etc. 

Hugs Janette xxxx 

Community Champion

Re: Bone mets - please join in

Hi Sarah,

Sorry you have had to join us. It is very raw and scary at first, but it does get better. Once a treatment plan is put in place  you will start to feel more in control. I am three years on since the double whammy of SBC, and there are ladies on here who have been dealing with this for many years.

Be gentle with yourself, write your questions down for the onc. Scream , cry  when you need to , you don't have to be a saint.

You will find the 'New You '.

Hugs Marie xxx

Community Champion

Re: Bone mets - please join in

Thought id also  post this as it may give us all a bit of cheer. When i saw my onc on Wed, i mentioned 'liquid biopsies  ' which he explained  are actually blood samples from which an attempt is made  to classify cancer cells within the circulating blood. I asked about this because I had heard about it on the Inspire website. 

 

My onc had, at a previous appt explained that they thought my ca had changed its DNA(letrozole no longer worked, whilst id had a brilliant response some years earlier) so this week,  I wanted to know if i was still oestrogen pos.

 

the onc said on Wed there was a trial being considered soon which would be looking at precisely that and I would be eligble for it, but that the planners were still trying to find the money.

 

apparently they hope to be able to look at the subsequent dna changes that happen and to then be able to target these and even eventually maybe predict which changes will happen so they can target those also.

.

if this approach works then ethically, the NHS will have to make it available all over the UK, as I suspect it will soon be in the USA....as they seem to be trialling it already! 

 

THis appears to be a radical new way of looking at cancer which could make great inroads into treatments, because I had already heard that ca cells metabolism uses specific proteins in order to grow and spread. Seems this new method could perhaps lead to them  nipping  these in the bud? As well as forgo the need for tissue biopsies, which of course are painful and traumatic and cannot always be done...some mets are far too small to be seen.

 

i think CANCER RESEARCH  UK .is a good place to watch, for these new trials hopefully to be emerging shortly.

 

love and hugs

 

Moijan

Community Champion

Re: Bone mets - please join in

Hi Sarah, sorry you have been through such a traumatic time. Just wanted to tell you that I was diagnosed in 2001 with lobular oestrogen pos bc. Had a mastec -  lymph nodes 12out of 13 were positive and my margin was less than the millimetre they like...in fact the bc had spread out of the nodes...into the fatty tissue under the armpit. All scary stuff I know, but now im 15 years on, albeit with secondaries in my liver and spine.

 

i do hope that helps...I know it feels like the end...I retired because they said there was a 75% chance of secondaries within two years and I was just as scared as you probably are.

 

i like to think I live a normal life and in fact things do feel normal, apart fom all the hospital visits!

take heart, try to enjoy the little things if you can...I havent children, but my great neices are a distraction!

 

love and hugs,  Moijan💜💛💚💙

 

oh and Carolyn...I have been eating chocolate today, 90% cocoa🍫🍫🍫🍫🍫🍫🍫

Member

Re: Bone mets - please join in

Hi Sarah
I was diagnosed in Dec 15 with Bone mets in my hips and spine , I had 5 days of radiography then was put on tamoxifen , they have since found in her positive too so having zoladex , herceptin and denosunab injections . Looking back my pain is minimal due to radio and fentsnyl patch , my mobility is 100 % better , side effects are fatigue and aching joints. I feel very positive that my oncologist has lots of things up his sleeve to keep me living for many years and you should too xx love and hugs xx
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Re: Bone mets - please join in

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

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Re: Bone mets - please join in

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
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Re: Bone mets - please join in

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.❤
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Re: Bone mets - please join in

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

Community Champion

Re: Bone mets - please join in

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
Community Champion

Re: Bone mets - please join in

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
Community Champion

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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 

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Re: Bone mets - please join in

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 ❤❤❤❤
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Re: Bone mets - please join in

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

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Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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