Bone mets - please join in

[Sarn123]

Hi to everyone, sorry to read Helen is so un well again x
I've not been on for a while as had a few problems myself, went in to hospital 2 weeks ago for liver biopsy meant to be in 4 hours, two weeks later just returned home from hospital !!! The guy doing biopsys actually told me how fantastic he was at this procedure before we began completely missed the tumour he was going for and cut into my liver!!!! Panic stations internal bleed, it was awful!!! Plus then told nothing taken to test so no further forward, if he was the best man I would hate to of met the worst!!!!!
Ct scan and markers up so in a bit of a state at mo all treatment been stopped because of f*** up biopsy I got shingles back and really nasty infection. The good news is I'm home now and feeling human again I've just got my date through for the 5 August to start ebrilin and going to have cold cap as lost hair twice already and don't really want to go down that road again. Just want to get this all back under control as looking forward to getting back on hormones by Xmas, that's the plan👍. Sorry to rant on but felt I needed to talk. I am gutted that I ll now never know whether my status has changed but I gave it my best shot! Any tips on ebrilin would be good... Love to all sarn xxxxx

[scoobiesue]

Thanks chocs. Enjoy your summer break. Loved teaching . Just retired after 41 years. Love to all . xx

[Marirose]

Hi Chocolates thanks for the well wishes I think you all helped in getting me the result we all like to hear everything is still stable. The lump I was worried about appears to have dissapeared and didn't show up on the scan the onc said you can get thickening tissue that can be mistaken for lumps. So last night I had a drink of my favourite tipple. 

Please send my best wishes to Helen we miss her xxx

[edwina64]

Thanks everyone and best wishes for treatments and scans. My 2yr old grandson Ben fell off a slide today and broke his little arm! Makes you forget your own troubles....not a good way to do it though bless him .

[belinda]

Try not to worry too much edwina, hope you feel more comfortable soon. X
Hi Chocs, glad you are feeling a little less tired. Helen is much missed here at the moment, hope things get easier for her and she is being well looked after in hospital. X

[Chocolates]

FF - really pleased your new treatment plan is taking shape - hope se's are minimal and things go relatively smoothly. Janette, good luck tomorrow - will be thinking of you. Hi Belinda and Nicky, hope you are both doing as well as can be expected. Marierose, hope you're ok after your results today. Let us know when you can how you got on. Sue, I hope things are beginning to settle for you and you get some answers soon - sounds like they are keeping you busy at the hospital xx
Edwina, sounds like your onc is covering all the bases so don't be too alarmed. An abscess left untreated I think can cause these types of problems so fingers crossed the scan is just routine more than anything, especially given your sbc. However, I know it's still a worry so let's hope things happen quickly so you don't have to wait too long.
I'm beginning to feel less tired now as this week progresses so from next week I should be at a stage of enjoying my summer hols. Fingers crossed.
Our lovely Helen is still struggling but thanks everyone for their well wishes and support. They are very much appreciated. As soon as I have an update on what the next plan is I'll let you know. I'm just off to sit with her now for a while.

Huge hugs to everyone,
Hxxx

[edwina64]

Hi everyone....well spoke to my  onc on the phone about my toothache and numb lip and chin on left side. She is prescribing antibiotics but said that it could poss be a  cancer spread , apparently I will have to have a scan of the brain to determine if it doesn't get better. Very scared now and wondered if anyone has had this and what happens next?

o

[nicky08]

Hi
Good luck FF with Femara, I'm on it as well but we get the generic brands over here which in themselves cause extra side effects so it is worth checking out the ones that aren't as bad. However if you get the branded version it will be the one with the least side effects. I am less achey on AIs than I was on tamoxifen all those years ago so I don't seem to suffer too badly. Hope the added drug doesn't have side effects of its own that cause any problems. Good luck.
Good luck also to Janette for your results tomorrow and Marirose for today. Hugs to everyone else having a tough or anxious time.
Nicky x

[rosie53]

Good luck with your results today Marirose, keeping my fingers and toes crossed for you 😉 also good luck to anyone else are getting results/scans etc today.

Janette xxxx 

[rosie53]

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

[rosie53]

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]

Thanks Bel!

[belinda]

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]

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]

Hope you get some answers soon Sue. X

[scoobiesue]

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]

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]

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]

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]

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]

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

[belinda]

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]

Heres another xx
https://m.youtube.com/watch?v=63yTZxj7FOk

[edwina64]

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]

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]

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]

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]

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

[scoobiesue]

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]

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

[rosie53]

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]

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]

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]

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]

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]

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]

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]

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]

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!

[rosie53]

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

Hugs Janette xxxxxxx 

[rosie53]

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]

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]

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]

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]

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]

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]

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]

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]

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]

Great news Lynnq x