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Bone mets - please join in

rosie53
Member

Re: Bone mets - please join in

That last post was to Funnyface  (flipping predicted text!)

rosie53
Member

Re: Bone mets - please join in

Great news FOR,  hope it all goes well for you. As far as the Famera a goes I can't comment as I have only been on tamoxifen but I know lots of ladies are on it, iv just read you need to careful which brand you get?? Have a feeling that will be my next treatment when the tamoxifen stops working, get my 3 monthly CT and TM results tomorrow and hoping the tamoxifen is still keeping the blitters at bay!!

Hi to everyone hope you are all keeping well,

Hugs Janette xxxxxxx 

funnyface
Community Champion

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Thanks Bel!

belinda
Member

Re: Bone mets - please join in

Go FF! Hope this treatment is really successful. I have some of the usual stiffness I've always had on hormonals but nothing extra terrible or unusual on Femara. After chemo it's been a spell of normality. Good luck, take care. X
funnyface
Community Champion

Re: Bone mets - please join in

All set! Ready for new treatment! O2 all squared away. Only need it if I'm out moving around alot. Ibrance was approved by insurance and a company got my copay sponsored. The copay was $2900 US currency/ month. Belinda I'm nervous on the femera. I see a lot of girls on another site complaining of severe joint pain from it. Was wondering if you have any problems or pointers. FF

belinda
Member

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Hope you get some answers soon Sue. X
scoobiesue
Member

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Thanks Belinda. Another day in hospital they have no ideas. Xrays showed no new breaks and the rod in place. She intends to organise a heart trace. No DVT .When I asked If the pain could be related to increased mets she said possibly but didn't want to scan. The world we inhabit is a mystery. Hope all are doing well. Sue xx

Marie123
Member

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Hi Edwin, don't know if this is of any help. At the start of taking denosumab I developed a numb sensation across my mouth and chin. My blood test showed low phosphate levels. I was given meds for a week. I called them the ' crash , bang Medicine' I spent a lot of time in the bathroom. I know too much information. However at the end of the week my levels were normal and the feeling restored. Good luck with all your dentistry. Take care Marie xxx
jenny29
Member

Re: Bone mets - please join in

good morning everyone

 

there is a documentary on bbc wales tonight by someone with SBC.

 

Sorry I dont have any suggestions for you Edwina but hope you get treatment soon and that it goes okay.

 

Sending prayers to everyone who is suffering and in pain at the moment.

 

Jo_BCC
Member

Re: Bone mets - please join in

Hi edwina64

 

While you are waiting for replies, please don't forget our helpline team are at hand to help, do  give them a call they're here to support you. 0808 800 6000 lines open at 9am this morning.

 

Take care,

Jo, Moderator 

edwina64
Member

Re: Bone mets - please join in

Hi everyone I wanted some advice please but first best wishes to Helen hope you get sorted very soon xxxx 

I have to have my wisdom tooth out as I have an abcess so I have to come off denosub for two months before dental treatment. 6 weeks in I have suddenly developed a numb lip and chin. I looked it up on line and some of the reasons you get are v scary! Has anyone had this? My e/e combo is not working so going on cape in 2 weeks and am scared they won't  let me start it. Also tooth ache is ddiving me mad and still no appointment...rant rant rant....

Best wishes to everyone , we seem to get new problems everyday, it's  difficult  to cope sometimes xxx

funnyface
Community Champion

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Ladies sorry to hear of all of you who are having rough times and hoping you all get some relief soon. FF

belinda
Member

Re: Bone mets - please join in

Hi edwina, you need an urgent referral re tooth, where are you having the extraction? If at your usual dentist check to see if your Onc can refer you to the dept at your hospital instead, pretty sure it would be quicker for you.
X
geordiex
Member

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edwina64
Member

Re: Bone mets - please join in

Hi everyone I wanted some advice please but first best wishes to Helen hope you get sorted very soon xxxx 

I have to have my wisdom tooth out as I have an abcess so I have to come off denosub for two months before dental treatment. 6 weeks in I have suddenly developed a numb lip and chin. I looked it up on line and some of the reasons you get are v scary! Has anyone had this? My e/e combo is not working so going on cape in 2 weeks and am scared they won't  let me start it. Also tooth ache is ddiving me mad and still no appointment...rant rant rant....

Best wishes to everyone , we seem to get new problems everyday, it's  difficult  to cope sometimes xxx

Pleasant1
Member

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I didn't even listen to the song Janette! Whatever noise it was over the text was too distracting for me. I was lost in the facts, her interview and the awful ignorance about metastatic cancer most of us often endure. x

rosie53
Member

Re: Bone mets - please join in

Sue, sorry you have had a rough day, I'm sure it won't be anything serious maybe your GP is just being cautious!

Pleasant, Holley Kitchen's video is really touching isn't it, my son bought me the song last week.

Hugs Janette xxxxxxx  

Pleasant1
Member

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No doubt most of you have seen this, but just in case anyone's not. Perhaps we should pass it on to as many friends and family as possible and up the anti for metastatic research and some frickin' cures:

 

https://www.youtube.com/watch?v=34Xkzocwq4M

 

So sad to hear so many of you are suffering with worsening symptoms and hope you get the treatment you need to help improve things.

 

Love love

 

x

belinda
Member

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Hope this is nothing important Sue, easily fixed, so you can get on with the school hols. X
scoobiesue
Member

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What a day. First day of the school holidays and I spent it in the hospital Went to GP with swollen feet. She sent me immediately to the hospital. They have done the usual bloods and xrays. Back for a ultra scan tomorrow. Not sure what is causing it. May be from the pinning of the fractured femur or spread of mets to the hip. Lots of tears today when I have tried to be treat this as a cronic condition that can be managed. You ladies really help. Love and good wishes to you all. xx Sue

belinda
Member

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Sorry so many are going through such stressful times. 😞 Really sorry to hear Helen is back in hospital. 😞
Take care all. X
rosie53
Member

Re: Bone mets - please join in

Hi Chocolate, good to hear from you, hope you have managed to get some rest today, I think you are amazing juggling full time work, a family and this dreaded disease, you take care and look after yourself!! Thanks for letting us know about Helen she really is not having a good time of it lately, please send my love and best wishes to her.

Hugs Janette xxxxxxx 

Marirose
Member

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Marie glad you are climbing back up again don't like to see you upset would rather have you back to your cheerful self xx

 

Chocolates sorry to hear you are stressed it's understandable when you juggle work and illness together and thankyou for letting us know about Helen you both have been missed especially in the cafe. xx

 

Helen we all miss you hope your stay in hospital will not be long and you soon feel a little better sending you lots of love and hugs xx

 

To everyone else my love to you all xx

Marie123
Member

Re: Bone mets - please join in

Cancer is a circus,

I'm dreading the neurosurgeon stoppong my holiday, haven't heard anything so far , so hopefuuly will go.

I feel as if I fell off the tightrope last week. Luckily my forum friends acted as my safety net and caught me before I emotionally crashed to the ground. At the moment I'm just houncing around trying to get over to the ladder to start climbing up to the  tightrope again. Then I can set off again with hopefully Letrozole working. .

I know I will fall off again , but that is the nature of this illness.

To all my fellow high wire acrobats thank  you . M xxx

nicky08
Community Champion

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Hi all mets ladies, old and new, hope you are all coping with whatever life is throwing at you right now.

Chocs - so sorry to hear Helen is back in hospital do pass on my hugs and best wishes - along with everyone else's. Not surprised you are so exhausted, you are coping with a lot and I know at least one teacher friend who eventually retired early as everything was getting too much for her - and she didn't have any health issues to deal with.

FF - hope the new drugs you are getting work really well for you and you cope with any SEs, I'm not familiar with the newest inhibitor but that's becasue we can't get it over here yet. Keep up your strength for your daughter's wedding, not long now.

Take care all and sorry if I've missed anyone's news out, it's not intentional, its just called chemo brain!

Nicky

Chocolates
Member

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Morning ladies, sorry for my prolonged absence, end of term was exhausting - so much so I'm meant to be at work now getting organised etc but just really tired so may not go in till tomorrow. Just need to find some energy. Have just quickly scanned through the posts to see how we all are and it's a mixed bag but just lovely to see the support for everyone.
Our lovely Helen is back in hospital and very poorly again. Shes been in this time for a week and not sure yet when she's coming out. She sends all her love to everyone and says she misses you all.

Huge hugs,
Hxxx
stresshead
Member

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Hi Pleasant, sorry for late reply but just wanted to echo what the others have said. We have all been there , some of us several tmes, and fully understand. I have skn mets and at the moment treatments dont seem to be working and 'm findng it really diffcult to cope. I too have counselling and have just succumbed to anti depressants....anything to help!!  You put into words most of the things i feel...dont want to mix with people etc, the total despair when you look at your children etc, the dreadful feeling every time you see your onc or get scan results.....but these ladies on here are brilliant. Rant, rave scream, cry...do whatever you want...we are there for you. x

rosie53
Member

Re: Bone mets - please join in

Hi Pleasant, glad to read you have had a good day out with your family, sometimes getting out of our own four walls can help take your mind off things a little. Hope you didn't mind me commenting on your dose of naproxen  (I work in a pharmacy) you tend to never take your dispensing head off!! It's worth querying with your GP/pharmacist.  Take care hugs Janette 

 

Pleasant1
Member

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Hi Janette, I got told I could take them 3x/day (I try to take at breakfast/lunch/dinner-ish (and the stomach settler first thing). I hope to reduce them if/when the injections help. ?!

Pleasant1
Member

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Thanks so much to you all for your kindness. It's so great to learn about anyone living well with this for more than the 2-5 year statistic. I really need these positives to grasp on to in my current desperate state of mind.

 

Today the sun's shining and we went to the Fleet Air Arm Museum (the Groupon ticket was about to run out)  – you have to do this sort of thing with boys. I can't say I was upbeat, but it was nice to share something together, and at least it got us all away from constantly 'jobbing' at the house.

 

I'm so lucky in so many ways and do realise and thank the universe. Usually I'd be greatful within but the shock and fear phase of this diagnosis is suffocating. If I could live 10+ years that would be amazing! Smiley Very Happy

rosie53
Member

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Bumping up for Helen and Chocolates 👋 👋 missing you ladies hope your both doing okay.

Hugs Janette xxxxxxx 

rosie53
Member

Re: Bone mets - please join in

Hi Pleasant, sorry to hear your struggling with this horrible disease but you have come to the the right place to sound off. We all understand how you are feeling because we have all been there, you can shout, scream rant and swear  (although you will get bleeped 😉) .

It all takes time to absorb  (my dx with mets was last March) and I was devastated and didn't think I would see the year out but with the help of my truly wonderful friends on this forum I got stronger and more able to deal with it. Before my treatment plan kicked in I was in terrible pain and had to go to A&E a few times but now I just get a few aches and pains now and then, like you I take naproxen 500mg but you should only be taking them twice daily I was bit concerned to read you are taking 3??? If you need to take anti depressants to help you through it then that's fine you are dealing with a huge shock and they should help take the pressure off.

You take care and be easy on yourself hugs Janette xxxx 

funnyface
Community Champion

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Stilhere, I knew that it was an inhibitor, but when I googled and asked if it was a chemo the answer was yes. When I just looked up ibrance it just says it is an inhibitor  and nothing about chemo. Guess I will ask my onc.

funnyface
Community Champion

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Pleasant 1, I remember when I first had mets I felt like Scrooge being led up to look in the window watching my family having fun without me. I felt like they weren't my family any more and that I should just disappear and make it easier on every one. It was a few weeks before Christmas and my family was also running around decorating and buying more and more decorations. They were trying to make it my best Christmas and it was obvious they thought it was my last . I wanted to rip everything down. I finally list it and told them to stop. I told them they were making me feel worse. I can't tell you when things changed, but it did get better. I am coming up on 10 years in November. I have lung mets. Please vent when you need,or stick your head in the sand like an ostrich, or celebrate when you get good results. There is no right or wrong way to handle this. There is what works best for you! Hugs! Funnyface

JulieD
Community Champion

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Pleasant1, yes, absolutely you are allowed. We get it, we've been there, we sometimes return to that dark awful place, you aren't alone and you really can let it all out here.

 

It's a huge thing to take on board and to try to get your head round and find a way to deal with and cope with a new and different and unwanted life. As the ohers have said, it will get easoer, you will find a way but it does take time and you have to try not to beat yourelf up about how you are feeling.

 

Lots of us are on anti=depressents, quite a few have had counselling, take whatever you are offered and feel you can cope with to help you deal with this horrid diagnosis. Keep coming here and share with us.

 

Rads can really help with pain, though you might initially feel a bit worse with what they call bone flare,but after a few weeks it should have made you much more comfortable.  With things like Denosumab (I'm on Zometa whch is similar)and also hormonals they generally say it takes about 3 months before you can see it's working. I have been on Femera since secomdary dx in March 2010 and it has so far kept me stable. I hope that hearing about others living for years after dx will give you some hope, in the mean time I send you love and strength x

 

LemonDrizzle
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Re: Bone mets - please join in

Hello Pleasant, you can say what you really feel here as we all completely understand. I was diagnosed with mets to liver, bones and lungs from the start in March last year and felt the same as you. Other than hospital visits, I wouldn't leave the house or see anyone apart from very close family for months, but you will come out of the dark hole you're in now although it won't happen quickly. Take as many positives from this site as you can and don't push yourself too hard x
Marirose
Member

Re: Bone mets - please join in

Hi pleasant1 you are allowed to let your true feelings out on this site and you will find other ladies who have the same condition as you and have managed to get a number of years through different treatments they will be along to introduce themselves and give you some very good advise. So sending you lots of hugs and love and I hope we see you in the Cyber Cafe to let yourself join the silly crowd and have a cancer free laugh xxx

belinda
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Hi pleasant, I think we will all know how you're feeling. I was diagnosed stage 4 from the start, in my early 40's. I felt more anger than sorrow at the time. I knew so little about breast cancer and was just really peeved this was years before my 50th birthday. Now I realise there are many much younger than me dealing with this. 😞 I have no answers only that you will find a way with coping, dealing with things, it takes a while though. X
Jobey68
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Hi pleasant1,
You most certainly are allowed to sound off in anyway you wish, you are going through one hell of a time and everyone here will try and support you all we can, I'm 47 and was diagnosed with primary BC in March, I cannot imagine how you feel with such a young family, my sons are 24 and 26 and my fear of leaving them breaks my heart, please don't feel guilty for posting what ever you are feeling, it's such an evil cruel disease and you need the chance to scream and rant and talk to people who understand, I take anti depressants and they have done me the world of good, diazipam are also great at calming anxiety, don't worry about the need to take tablets just do whatever helps you, I so wish there was more I could say to help you, enjoy your cider and I hope it helps you relax, wine has certainly helped me through, big hugs to you xx Jo
Marie123
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Yes, yes it is allowed. Scream and moan as much as you like. We all understand and we have all had 'those moments'. I've had counselling and it did help. Please take care, there are some very wise ladies on here who will I am sure be more helpful than me. We are all in this together. Hugs Marie xxx
Jam
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Great news Lynnq x
Pleasant1
Member

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I haven't posted since before my official confirmation of secondary. It's even more awful than I anticipated: two tumours (10th rib and top of left buttock) bone mets in a few places and a shaddow on my liver. I've been in the pit of dispair for over a month – can't seem to drag myself out of it. Suffering a lot of left-side neck pain too which is bothering my head.

I'm now taking three x 500mg Naproxen, four doses of Paracetamol, sometimes Oromorph and sometimes Diazapan. I've had one Zoladex injection, two weeks ago, to help make me post menopausal. After the next injections I'll begin Letrozole (Femera) instead of Tamoxifen. I'm also having a monthly Dynosab injection for bone mets. I've a radiotherapy meeting next week with a view to treating tumours. I'm told it takes a while for the injections to begin helping with pain but how many months is this likely to be?

I'm considering taking anti-depressants as I just feel so doomed. Sorry but it's currently unbearable, mostly when I stare at my family and grieve for the early loss of everything we've worked for. I've forgotten how to laugh about anything and I look at everything as if it's pointless, have low energy and when I try to do anything I'm mostly in pain - like gardeing or any chores. I feel totally useless on every level.

I'm miserable to be around and everyone's finding it all really difficult to cope with. I'm not Catholic but I feel as if it's all my fault – if not for it returning – for being unable to feel positive and upbeat for my children, and if I wasn't here everyone could get on and enjoy living. All I want is my normal energy, no pain and to be the woman I was before this terrible malady, but that will never be. I'm now feeling guilty for posting this and bringing you all down but I'm sure you've all lived in a similar dread zone at times. Am I allowed to sound off in such a depressing manner on here?

I'm supping a cider now so perhaps there's some hope?! x

belinda
Member

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I don't know much about this new drug but hope it's marvellous for you FF. x
Stillhere
Member

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Hi funny face, I think that the Ibrance(palbociclid) is not chemo but a targeted therapy which inhibits the kinases 4 and 6 which fuel tumour growth in ER+ breast cancers. I'm no expert btw!! It just interests me as I feel that there's not many new treatments for us. I'm sure you'll learn lots if it is the next treatment for you xx
funnyface
Community Champion

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Silly me I new letrozole was a hormone and assumed the new drug ibrance was too. It's chemo so I won't be having a chemo break like I thought. 

rosie53
Member

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Lynn, I'm soooo pleased for you, that's fantastic new!!! Get yourself a cheeky glass of wine 😉

Hugs Janette xxxxxxx 

Lynnq
Member

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Yes of course I am very happy... The pain was a trapped nerve they reckon.

Pleased that it has put a smile on your face Marie.
Marirose
Member

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Lynnq what great news it gives others hope xx

LemonDrizzle
Member

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Lynn, that sounds like fantastic news which needs celebrating x
Marie123
Member

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Hi Lynnq, I too have just started Letrozole, I know we are all different and all cancers are different, but you have just put a big smile on my face. Great news for you , celebrate and enjoy. Love Marie xxx