Bone mets - please join in

[Carolyn52]

When you are being fitted for the wig ...remember you won't have your own hair under so it needs to b a tight fit and it will look better too. They often look balky when trying them on with hair.
I got through three wigs ..first one opened the oven door and singed the fringe. Second one got paint on decorating and the third one ..the dog ate !
Hugs xx

[avrelia]

Hi Carolyn, no I am not cold capping, I just thoght that probably I will lose some of my hair anyway, so why not the whole of it rather being bald only at certain spots....Will share with you when it starts falling, may be just before the second cycle, who knows, anyway, I am having an appointment at the Wigs clinic, had already chosen a nice wig, hope that they are going to find the right size coz my head appears to be a big one 

Positivi thinkink helps me quite a lot, you sound positive as well and you have had a long fight!!! Admirations!!! Keepp on having that high spirit and be as helpful as you are!

XXXX

[Carolyn52]

Hello avrelia
Glad u have had the first chemo and got it under your belt so you know what to expect from now.
It's hard but you sound positive and let the chemo give the c the big kick up the rear end !!
Can't remember whether you are cold capping or not ..if not ..the hair will begin to fall out now and its heatt breaking to c It all go up the Hoover !!
But ..it will grow again .
Well all the best and glad u r well.
Xxx

[Carolyn52]

Hiya Barton
Yes furniture arrived yesterday ..hubs put it all together without too much swearing. It's lovely . Seats eight so ideal when entertaining.
Your dad was really brave to have the op at his age. Dread the day I need one of those scooters as the old dears zoom past as if they are in the grand prix against Lewis Hamilton !!
Just had a mishap at boot sale ..lifted my arm but crutch got stuck and whacked grandson ..he's got a nasty bruise ..bad nanny.

[Barton]

Hello Carolyn, no, not sitting on balcony today as it keeps coming over way too hot for me - being on Cape I have to take care in the sun.

Glad you are not over-stretching yourself today. Take it easy for the rest of the day now. By the way, has your new decking furniture arrived yet (sorry, can't remember the date you said - might be tomorrow, come to think of it).

I spent just over an hour with Dad this afternoon. My sister bought him a new mobile phone from QVC the other day as his previous one completely gave up the ghost (probably used in the Ark, anyway!). It is a really simple one, but as he has real trouble with his sight, and he has man fingers (ie really big), he found it a little difficult. We got there in the end though. On a side note, I don't think he is walking enough!

Hope everyone else is taking it easy, and finding se's not too bad.

Hugs. Barton.x

[avrelia]

Hi ladies, hope that you are ok, new ones-SORRY that you had to join, but make your self at home, ladies here are gorgeous!!! Have not posted for a while, but have had quite a few busy days at work. Firs chemo is done, SE are pretty ok, just a slight change in taste and a bit of a sore mouth and throat. My appetite is strangely high, may be bacause I quit smoking as well. Still waiting for my first bone strenthener injection with my second chemo. By the way is anyone being treated at St Georges London?

Had a lovely day yesterday, my partner bought me a small and cute diamond ring, love him so much. Today I am having a lazy day covering one of our colleagues ate the same time, reading about all these benefits and stuff. Hope all of you are OK, keep your heads up.

[Carolyn52]

Barton
Boot sale is today at Sainsburys so not too much walking like the big one .
Hope u r enjoying some sunshine on your balcony ..gorgeous sunshine today ..bit hot though ..I can't seem to tolerate it like I used to.
Up to a few years ago . Could go to Spain and lay on a Sun lounger for 6/8 hours but now it's all huffing, puffing and being a sweaty betty !!

[Barton]

Carolyn, I hope you don't/didn't overdo it at the car boot sale today. You know what happened last time!

Hugs. Barton.x

[Carolyn52]

Good morning ladies
Well the sun is shining and I have coffee custard creams and the Sunday papers so a good start to the day.
Sunday roast later and a car boot sale so what more could an old biddy of 64 want ????
How are you all ??
Xxx

[artygirl2061]

Thank you Marie. You are all so lovely. xxxx

[artygirl2061]

Thank you Funny Face. xxxx

[Marie123]

We like good news here artygirl xxxx Enjoy

[funnyface]

Pleased for you artygirl!! Fantastic news! Doing a happy dance!! FF

[Angelmum72]

Keep is imforned Sarah how you are getting on

[Corey45]

Thank you to Angelmum72,moijan,marie123,natalie1,andrea and everybody that has replied to my post and given me hope. yes you are quite right we need time to let things settle.we have had a terrible year as we are dairy farmers and struggling with milk prices and everything else, now the shock of secondaries has put the tin hat on it. you are right i will feel better when a treatment plan is in place. at the moment i have no pain which is good as i can still run my holiday cottage(attached to farm house) which i do all the cleaning for . it also takes my mine of the cancer for a while.sorry i seem to be going on a bit but just cant thank everyone enough. love and big hugs to you all.

[artygirl2061]

Thank you Julie. xxxx

[JulieD]

First of all a very big smile 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

[Carolyn52]

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

[truffle_shuff]

 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

[artygirl2061]

Thanks so much Barton xx

[Barton]

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

Hugs. Barton.x

[artygirl2061]

Thanks Waffles. xxxx

[Waffles]

Hi Artygirl,

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

[Carolyn52]

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!!

[Waffles]

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

[Carolyn52]

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

[Carolyn52]

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

[artygirl2061]

Thanks Andrea - that's really kind. xxxx

[Waffles]

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

[Waffles]

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

[Carolyn52]

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

[Carolyn52]

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

[andrea_carts]

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

[andrea_carts]

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

[daisyjane181]

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

[rosie53]

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 

[HelenAquarius]

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

[artygirl2061]

Thanks Janette xxxx

[andrea_carts]

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

[rosie53]

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

[artygirl2061]

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

[andrea_carts]

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

[Barton]

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

[Carolyn52]

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

[Carolyn52]

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

[rosie53]

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 

[Marie123]

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

[Moijan]

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

[Moijan]

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🍫🍫🍫🍫🍫🍫🍫

[Angelmum72]

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