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Bone mets - please join in

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Re: Bone mets - please join in

Hi Corey, I know exactly how you feel. When I first went to the breast clinic and was told that I am 90% having a breast cancer, everyone was so positive, because all of them presumed it was a primary one. They said that is is curable, although, as you have heard, many cancers come back after a while...Anyway, as you guys say everyone is different. Whatever you read it might be not applicable for your as a case. Then I had all the scans and they revealed bone mets. All of the team started to talk to me, as if I was supposed to be dead shortly, that made me really desparate. Then i started asking questions about my prognozis, no one could give me an answer. They emphasized several times that the illness is no longer curable but treatable, and I will start first whith chemo and bone strenghteners, then if everything is ok I can have surgery next year...

These hospital visits definitely kick the good mood out of me, every time they take downd our weight, blood pressure, temperature....Speak to you as if you are doomed....

Be positive and live your life as if this is just a chronic disease, if you know what I mean, accept it and fight for good days, everything will be ok.

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Yes I asked one of the oncologists team about cannabis oil and he said he'd not heard of it!!

 

A friend of a friend has started growing it - it's cannabis but with the THC (bit that makes you high)  taken out as he has a lot of bowel pain and its the only thing that helps. It's much cheaper to grow yourself but this isn't in oil form so you eat it in leaf form or smoke it. He gave me some.. Smells really bad in leaf form! The prob is you don't know if this is doing you any good or not with all the other stuff we are on. There has been research done in Oxford and lots of people in America swear by it. Hard to know until more complete studies done but there is definitely something in it I think. 

Helen 

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Hi Sharon, yes heard good things about  cannabis oil. Wanted to try it myself.. Trouble is...how can we get it?

I actually asked my onc a while back..he said'sorry I cant help'

 

hope you find it useful, do keep us posted

 

Moijanxx

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Hi Sharon
Keep us informed how you go on with the cannabis oil pls as I'm interested in trying this too x
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Hiya Sharon
Nice to hear from you as you have been quiet for a few days .
That's interesting about the cannabis oil ..let us know how it all goes with it.
Sometimes you have to try these things although to b honest I'm scared about trying new things !!!
I hope u get another good option with oncologist ..hope its a gentle chemo as you certainly went through it with the doxitaxel a few months back and it will b hard for your body to cope with more strong stuff .
Keep in touch
Hugs xx💔💔
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Hi Carolyn ibrance common side effect is hair loss..so there's not many that dont cause that side effect...i didn't get any loss on capecitabine..xx dreading next Tuesday wondering what my oncologist wants to give me next or even worse what if there's nothing else for me..iv started on cannabis oil without the opioid..anything worth a try
Xx. Take care sharonx
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Corey lots of people have chemo when diagnosed.i had masectomy then chemo to mop up any loose cells in 2004.followed by rads to chest area...unfortunately it came back rediagnosed in 2013.so been on chemos and hormones since..its hard for us when they say something and then change it ..i dont think they are very good at dealing with our emotions.but at least you now know your next plan.take care Sharon x
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Hiya Sarah
Sorry you are having such a hard time but at least you are getting the benefit of the best options.
Don't worry about the picc line ..nothing to it and it will save the hunt the vein every few weeks .
All the best .
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hi marie123 thankyou for replying i just feel so up and down. when i was told i had a bone met oncologist seemed optomistic but the nurse talked like id been wrote off. its feels different to when i first got breast cancer diagnosis everyone was so positive. hopefully friday i will get a plan sorted and feel a bit more confident .i have to say im not looking forward to the picc line being put in. i shall be a nervous wreak

sarahxx

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Re: Bone mets - please join in

Hi Corey, totally get what you are saying. At the beginning of this I felt like  I was a scientific experiment. Chemo yes , no maybe , no  second op yes then cancelled the day before.

Ask lots of questions and make sure you are happy  with your team.

I think the oncs are trying to do  their  best for is, but it is not an exact science everyone is different , cancers are different and the way patients respond to treatment is different. (Although  a little understanding from medical teams wouldn't go a miss )

 This is hard for you when you are so vulnerable, BUT it does get better. Your treatment plan will be put in place and then you will know where you are.

Be gentle with yourself and take care.

Hugs Marie xx 

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hi all, feeling scared and confused.after being diagnosed in july with one single bone met to my sacrum. (shortly after primary diagnosis) i was put on tamoxifen.told because the rest of my body was clear at the moment they would concentrate on the sacrum with targeted radiotherapy maybe at the royal marsden.now today i get a call from oncologist to say they have decided to treat me with chemo first instead then rads to breast then maybe rads to sacrum.i feel like they cant make up their minds and this has completely thrown me again. go to see oncologist on friday at rde and already panicking about what he is going to say. is this the norm for a single bone met? so sorry to moan on but my mind has gone into overdrive. xxx

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Bone scan tomorrow, seem to have a bit more discomfort in my pelvis but may be all in the mind. MRI head scan was good. Thank you everyone for all the hair information

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I have found with the hair thinning to keep hair shorter as it looks thicker! I tend to ruffle it rather than brush it !!
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Ha ha Carolyn, yes at least the dogs shed more than I do......and hubby is finally thinning too so the Dyson is groaning! Sorry you have thinning as well FF. Have you had any gastro problems on Ibrance? I'm having the galloping trots and stomach cramps but it may be the Taselisib. Lost my appetite too.....which could be a positive!! Thinking of everyone xx

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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
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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

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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.....

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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

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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
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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

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

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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
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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 oneSmiley Happy 

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

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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
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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.
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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

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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.Heart

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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 !!
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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

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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
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Thank you Marie. You are all so lovely. xxxx
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Thank you Funny Face. xxxx
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We like good news here artygirl xxxx Enjoy
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Pleased for you artygirl!! Fantastic news! Doing a happy dance!! FF

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Keep is imforned Sarah how you are getting on
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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.Heart

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

 

Hugs. Barton.x

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Thanks Waffles. xxxx
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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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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