Bone mets - please join in

[Carolyn52]

Hiya ff and still here
Sorry u are getting the hair thinning though as its bad enough on chemo but its very depressing ..it's probably the letrozole side doing it as I get loads of loose hair too.
I stopped my highlights ..so an old grey bag now !!
My hubs takes steroids for his chest infections and he says they cause it too ...so between us and the dog hair ..we burn out a lot of vacuum cleaners !!

Hugs xx

[funnyface]

Stillhere, My hair is thin and breaking from ibrance and letrozole. My eye lashes and eye brows have been thinned out since I started mets. FF

[Stillhere]

Hey Carolyn, I seem to be getting hair and eyelash thinning with Ibrance! Think it's a recognised side effect, my Onc just says it shows it's working!! Anyone got any tips? Never had lots anyway after so many treatments, will stop having highlights now though.....

[MarionP]

Evening ladies,

For those of you checking out wigs, it might be worth visiting http://www.mynewhair.org/

It was set up by Trevor Sorbie and lists salons who will cut and style a wig to suit you. There's also a downloadable booklet with advice on choosing and caring for a wig.

Love Marion

[Carolyn52]

Well ff. .I think you made the best decision to get real hair !! This all happened in 2004 when I had chemo but I expect I spent more on three acrylic wigs than a real one !!!
Fingers crossed I don't have to go through all that again !!
Just hope ibrance gets licensed here soon as you don't loose hair with that.
Xxxx

[funnyface]

Carolyn, I'm laughing at your wig dilemmas. When I was first dx with breast cancer a friend brought a wig maker to my house. He came measured mg head and told me about real hair wigs and acrylic wigs. He told  me about melting them. This was mid October and we celebrate Thanksgiving in November. Every year without fail I open the oven to check on the turkey and I burn myself with the steam. He said the realm hair wig was $1,000 and the acrylic was $300. I figured I would melt one at Thanksgiving and probably another one later. I figured I should just get the real hair one. I still have it! FF

[Carolyn52]

Good morning ladies everywhere
Just sat here thinking a year ago ..my life was about shopping, holidays and diy. .now you know I look forward to the Sunday papers with those little booklets which sell gadgets ...comfy cushions; grabby things to pick up without bending and heat pads etc !!
Best of luck everyone with their scan results etc.
Hugs xxx

[daisyjane181]

Julie d
Good luck with your scan results. Sending positive vibes to you. Debbie (daisyjane) xx

[Carolyn52]

Hiya Helen
Yep ..New furniture all done. What a shame about your lamp.
I must confess I have never been to Ikea ..our nearest is Bristol and as we don't have a van . Seems pointless as we couldn't trundle big stuff back in our car.
Hugs xx

[HelenAquarius]

Hi Julie.. Thanks for the zometa/denusumab info. It makes sense my bring on Zometa it as I am so short of breath so that se would be a disaster for me!

carolyn.. Happy your furniture up! I went to the new Reading IKEA today.. Was great but chose 2 coffee tables and a huge mirror for the bathroom but when I got to the warehouse storage bit, all 3 items were out of stock.. So disappointed! I had managed to pick up a trendy modern standard lamp, paid for it and then left it on the checkout! Aghhhhh! So annoyed. Rang and they said it hadn't been handed in.  I'm gonna go in omorrow and demand to see cctv!! 

H

[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