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Bone mets - please join in

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Re: Bone mets - please join in

Thank you Julie. xxxx
Community Champion

Re: Bone mets - please join in

First of all a very big smile Woman Very Happy and a happy hug for you artygirl. I'm so very pleased to hear your good news. I'm glad you found support here when you needed it and I  wish you all the very best for the future x

 

Welcome to all the new ladies, sorry you are eligable for membership of this group but pleased you have found it and hope you will find support here and not feel so alone and that our stories will help you feel a little less scared. Most importantly that you can see and believe there is HOPE.

 

Re Zometa/Denosumab. Zometa was the 'gold standard' treatment when I  started it 6 years ago, the other oral bisphosphonates weren't very popular as you had to take them and then remain upright without food for at least an hour....Zometa can interfer with kidneys so they do the blood tests to keep an eye on it, it can also cause osteonecrosis in the jaw (ONJ) BUT it not only strengthens your bones to help protect attack from the cancer there is some  evidence it may also  fight the cancer in some small way too. Denosumab does the same job as Zometa but in a slightly different way, it is kinder on the kidneys but can still cause ONJ and some people have breathing issues as a SE. The Zometa is cheaper but takes more time to administer so cost wise they probably even out. I could have gone onto Denosumab but chose to stick with Zometa as  it's working for me so why mess with it and also I  have a port which would still need flushing every 4 weeks ....I do find that I  get more tired and achy just before and just after treatment, it migh be the same with the Denosomab.

 

Daisyjane, I get my latest scan results on Monday too so we can hold each others hands virtually. The Tamoxifen should start to kick in in about 8 weeks so hopefully your scan will show this. It works for different lengths of time for everyone but it can work for years so fingers crossed that's what it will do for you.

 

Think I  better stop before I  write a book! Have as good a weekend as possible girls xx

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Re: Bone mets - please join in

Hiya truffle shuffle
Most of the ladies here don't get any problems ..it's just me being a wuss !!
I've had seven or eight now and I was ok till the fifth one I think. The aches / pains a re easily dealt with by a ibruprufen or something.I used heat pads / hot water bottle.
Please don't panic because of me ..if u do get any probs then I think u just need to mention it to oncologist . As I said on threads earlier ..I'm hoping to go six weekly with it .
I do have extensive bone Mets and I'm sure the good it does outweighs the achy days.
There is talk of prescribing it to primary ladies every six months as a precaution against future Mets ..so it must b felt that it justifies the extra costs.
Hugs xxx
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Re: Bone mets - please join in

 Hi Carolyn 52,

 

 I have just noticed , that you   mention you get pain after the Denosomab injections,  I have only had two and so far no pain, Is this something that will develop along the treatment. I have bone mets in several places , but the only one I get pain with is the one in my hip , pain in groin so makes walking hard . I also have Fulvesterant , 3 so far and no side effects, as I am thinking of going back to work , your input would be helpful , I dont want to go bounding in , like the Dulux dog , then have to go on sick again,

 

keep well xx

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Thanks so much Barton xx
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Re: Bone mets - please join in

Brilliant news, Artygirl! Sorry I'm so late to the congratulations! That is wonderful news.

 

Hugs. Barton.x

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Re: Bone mets - please join in

Thanks Waffles. xxxx
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Re: Bone mets - please join in

Hi Artygirl,

What brilliant news! I am so pleased for you. xxx

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Thanks waffles
Yes it feels like I have been hit by a bus for days 4 to 18 .
Clever little injection though ..gets stabbed into tummy fat and then has to get its sat nav system going around body to get to the bone Mets! Wish I had such a good sense of direction!!
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Re: Bone mets - please join in

Hi Carolyn,
I can sympathise as I get pain after the denosumab injection and it feels like I've been kicked about. Luckily mine doesn't last long. Pain isn't fun and it really affects your quality of life but I suppose at least you know that nothing sinister is causing it and the medicine is helping you. I'm sure they should be able to reduce the frequency of the denosumab injections without doing any harm.I was certainly offered 6 weekly injections if I wanted as it fitted in with my appointments better but I chose to inject myself 4 weekly. Best wishes xxx
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Re: Bone mets - please join in

Hiya daisy
Glad that u had a good holiday here in Devon ..sorry about the weather though ..swings and round a bouts but u can go to Portugal and get rain like my son did !!
I think all the treatments do take a while to kick in though ..letrozole that I take ..oncologist said 6/8 weeks.
Best of luck with scan results ...it's a worrying time and we all get the stress!
Hugs xx
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Re: Bone mets - please join in

Waffles
I hate the bone injection lately as I get so much bone pain for two weeks ....I asked about iv or pills but they said no ..they are phasing them out.
I have had a week free of pain ..it's lovely .I'm seeing oncologist Sept and going to ask for the injection six weekly or even eight weekly as for me ..it feels like overload !!
The injections are culmultive and I have had 7/8 now and maybe need less !! I also need a filling done at the dentist so i will have to mention that too.
Hugs xx
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Thanks Andrea - that's really kind. xxxx
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Re: Bone mets - please join in

Hi Carolyn,
Also forgot to say that although Zometa is quite a bit cheaper it also can cause kidney problems in some people particularly those who have kidney issues to start with.So they always have to be on the lookout for that too.
xxx
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Re: Bone mets - please join in

Hi Carolyn,
I started off on the bone infusion (zometa) but it was becoming hard to find good veins. It was taking up a lot of the nurses time and I was getting bad bruising and swelling in injection sites. Now I get denosumab which I inject myself at home with no problem.
I think also that although denosumab is a much more expensive drug than zometa it actually saves the nurses loads of time and frees up space in chemo unit as it only takes a minute to give instead of 40 mins or so with infusion.xxx
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Re: Bone mets - please join in

Yes ..I wander why some of us have denosumab injections and why some still have the iv version . Must b a reason as the injection is a few seconds ..the iv version much longer and invasive .
I'm off for the bone juice again Wednesday ..the four weeks come around so quickly ..
Hugs xx
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Hello Helen
Glad u have had a good holiday in Cornwall ..hope u tried a Cornish pasty and cream tea.
I know all about the she pee as my daughter in law has ordered one for camping. E bay less than a fiver !! The one with the little tank is better !! Marvellous gadget ..what are they talking about ..you are all thinking ..it's a little plastic funnel thing for ladies to wee through if u have to go ...saves you splashing your feet !!
Trust me to lower the tone already ....
Xxxx
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Re: Bone mets - please join in

Hi Debbie, I'm afraid I've no idea how long these things take to start working but understand your scanxiety I get it every time I have a scan, which is every 3 months! Will be thinking of you and have everything crossed for a good result! I would heartily recommend champagne & chocolate, well it helps me to relax!

Sending you big hugs, lets us know how it goes!

Andrea xxxx
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Re: Bone mets - please join in

Hi ArtyGirl, excellent news! It is so good when someone gets good news! I always feel it's another kick in the pants for C!!

Andrea xx
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Re: Bone mets - please join in

Good Morning Ladies

I haven't posted for a little while but have just come back from holiday in Devon - beautiful place, terrible weather unfortunately but hey that's holidaying in the UK!

 

Anyway, I was diagnosed with the double whammy of lobular breast cancer and extensive bone mets back in May 2016.  Since then I have been on Ibandronic acid (bisphosphonates), Zoladex injections and tamoxifen.  I am due to go back on Monday to have a CT scan with the follow up meeting with the Oncologist.  

 

I have to say the anxiety levels are starting to rise.  Can anybody offer me some words of encouragement?  I don't now whether they will see any difference in just under three months of medication.  Does anyone know how fast Tamoxifen works or how long you have to take it before it fully gets into your system.  Also I read somewhere that the Ibandronic acid takes a minimum of six months before its benefits start to show.  

 

Sending positive vibes out to everyone.  Tiger14 and Skippy I have tried to private message you but no luck.  I hope you are both doing OK.

 

Debbie xx

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Re: Bone mets - please join in

Hi Andrea, I use to have my injections on different weeks and which drove me mad so on another mition to "take control" of this disease I spoke to my onc about getting them on the same day each month, I now have them every 4th Friday, that way they are both out of the way for a month. 

Hi Helen, glad you had a good holiday, sounds like you had fun!!

Hugs Janette xxxx 

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Re: Bone mets - please join in

Hey arty girl that's super duper news. So lovely to hear good things :-))))

So, why am I on Zometa and everyone else seems to be on deosumab as bone strengtheners? Anyone else on Zometa?

By the way, just returned. From my VW camper trip round Cornwall..,was fab and must say to anyone who does camping but not tried a wee-she its a must. What a fabulous device for ladies who need to pee in the middle of the night! Think I might keep it by the bed now home to save the 20 steps to the bathroom...😆 Only kidding!
Helen
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Re: Bone mets - please join in

Thanks Janette xxxx
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Re: Bone mets - please join in

Hi Janette, notice in your comment that you have Denosumab & Zoladex at the same time! I didn't know you could do that, never really thought about it though! I have mine a week apart, Z at Dr's by practice nurse & D at hospital by chemo nurse. I might see if I can do them together! It would save my 13 appointments a year!!!!

Andrea xxx
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Re: Bone mets - please join in

Hi Carolyn, I'm fine thanks, just been busy and today been out having my denosumb and zoladex, plus still can't seem to shift this headache, it eases off then comes back!!
Arty girl, so pleased for you!!
Hugs Janette xx
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I just wanted to say thank you to the amazing SBC ladies who have been in touch with me in the last 10 days since I was referred for an MRI for a possible bone met picked up on bone and CT scan. I heard today it is infact benign. Relieved and happy but so grateful for your words of support and totally in awe when I read your stories of your strength. So am at beginning of my BC journey and still along way to go but If things don't work out to plan I feel really reassured that there is wonderful bunch of women on here who will support.
Thank you so much - will obviously be staying on the network. Good luck with all our treatments. xxxx
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Re: Bone mets - please join in

Hi Sarah, hope you've found some of the comments useful. I was diagnosed with SBC in Jan this year, 14 months after original, it is scary to begin with but you get use to that. It's different for everyone and at first it floored me (I have a 12 year old) but treatment is keeping everything under control at the mo and I know of a lady who's been on letrozole (instead of tamoxifen, it's for post menopausal ladies) for 15 years......

This is a really good supportive group with lots of good advice and some fun!

Sorry you've had to join but you'll be amazed how many people are living with this.

Big hugs

Andrea xxx
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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

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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
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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
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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

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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🍫🍫🍫🍫🍫🍫🍫

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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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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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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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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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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

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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
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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
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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

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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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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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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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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
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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

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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
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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
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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