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Bone mets - please join in

Chocolates
Member

Re: Bone mets - please join in

Jane, hope things are ok this morning at the hospital and calcium levels get back to normal so you can have your treatment. Sam, that was such a dreadful experience - glad you're home. Hope at some point you will be asking the hospital some questions about how this ended up going so wrong. Rest up now.

Helen has asked me to update you all - as you know these last few weeks have been very difficult. She's not been eating, has lost a lot of weight and has been told that the cancer has spread rapidly. last week she was told no more options, but after a meeting yesterday she has had taxol, in Helens words she has nothing to lose. She's very frail but I am willing this to work and buy her some time so she can get on a trial. The trouble is they are not sure if she is strong enough to cope with the chemo so the next few days are vital. She sends all her love to everyone and thanks you all for the support. She says she can feel your love and strength. As I know more I'll keep you updated.
If anyone else knows other threads where Helen was active could they let those people know as well - I only tend to be on this thread yet I know she was active across the site. It's a scary time but Helen is so brave to go for the chemo, please god it works.

Huge hugs everyone
Hxxx

Mermaid007
Member

Re: Bone mets - please join in

Hi Janette, following my primary I had 5 years tamoxifen and then 5 years Letrazole if anything the Lertazole was easier. You should be ok with it and when it works it often works for a long period of time.. Best wishes x
Jam
Member

Re: Bone mets - please join in

Hi we do seem to be a bit in the wars at the mo. Best wishes to everyone. My problem seem slight compared to yours but haven't been feeling 'right' for a few weeks and went for my zometa this morning and couldn't have it because my calcium is a bit high. Had 1litre of fluid and its started to come down a little. They said if a bed was available tonight they'd ring for me to go in. If not I've to go in the morning. Has anyone else had this problem and if so is there anything I should be doing. Bit worried Letrozole maybe not be working as well as was or could be I've just not been drinking enough. Any help much appreciated xJanetx
Rose_Red
Member

Re: Bone mets - please join in

Thank you Jo. I will look at the sites you have recommended. Rose
Jo_BCC
Member

Re: Bone mets - please join in

Hi Red Rose

 

Sorry to hear you're feeling rather nervous.  I am putting for you below the link to our Someone Like Me service which you might find helpful

 

https://www.breastcancercare.org.uk/information-support/support-you/someone-talk/someone-me

 

I hope this might help too:

 

https://www.breastcancercare.org.uk/information-support/support-you/local-support/living-secondary-b...

 

Take care,

Jo, Moderator

Sarn123
Member

Re: Bone mets - please join in

Hi all thanks for all your kind words it really helps
Good luck to everyone having difficulties at mo lots of love to you all sarn xxx
rosie53
Member

Re: Bone mets - please join in

Thanks ladies for all your advice/info and good wishes.

Sam, what a terrible time you have had, bet your just glad to be home now.

Hugs Janette xxxxxxx 

Marirose
Member

Re: Bone mets - please join in

Hi Janette I was told by my previous onc that markers were inconclusive they only relied on ct for results so we don't have markers done. But brilliant news about your ct scan thats worth a drink hope your bloods will be ok Heart love xx

 

Hi Sarn sorry to hear about your ordeal it sounds horrific glad you are back in your own home and I wish you all the best with your new treatment love xx

 

Best of luck to everyone else xx

Rose_Red
Member

Re: Bone mets - please join in

Is there anyone out there who is ER+,PR+, HER2 - and has secondaries to spine and liver? I was diagnosed in 2011, have just been told I have had my last cycle of Eribulin (my fourth type of chemo) and am awaiting CT results. My previous results showed bone mets stable but liver results were inconclusive. Feeling very nervous. Rose
belinda
Member

Re: Bone mets - please join in

Oh Sarn, thank goodness you're home now, what a stressful time you've just had. 😞 There's an Eribulin thread on the treatments and medical issues forum, started, I think, by Helen. Hope it works well for you. X
Hi Janette, I had much longer on other hormonals after Tamoxifen had stopped working for me, try not to stress about your markers too much. X
Elily
Member

Re: Bone mets - please join in

Hi Janette

I've just changed to Exemestane (hormone therapy) from Capecitabine (oral chemo) as tumour markers were rising but nothing shows up on a scan. I shall see my Oncologist again next Friday to see how things are going. This is the third hormone treatment I've tried and I've found them far more debilitating than oral chemo. I was feeling pretty well (and I work full time) before the change, but my bones/joints started aching with a vengeance after Day 4 of the Exemestane.   I'll post if or when I know any more.

nicky08
Community Champion

Re: Bone mets - please join in

Hi Sam, that sounds just awful and, as you say, none the wiser about your receptor status. I know an internal bleed is the main risk with the procedure but I'd not heard about anyone having one or their doctor missing their tumour, your poor thing. I hope you are able to build up your strength before starting on your new regime and you must be so happy to be out of hospital and back home. Keep in touch with us all, those on the same treatment as you and also any of us with liver mets.
Janette, that sounds like good news to me! The scan would definitely have shown any further progress so do take that as a great positive. I know what you mean though when you want totally good news but there's something there that niggles, I've had that many times before! I don't have TMs measured myself so can't help regarding any rises and what might cause this to happen, hopefully someone will be along to help.
Enjoy the weekend everyone.
Nicky x

Marie123
Member

Re: Bone mets - please join in

Hi Janette, sounds like good results, so enjoy. I have changed from tamoxifen to Letrozole. I didn't have any real se from Tamoxifen , but actually feel better on Letrozole. Hugs Marie xxx
rosie53
Member

Re: Bone mets - please join in

Hi ladies, well just got back from seeing my onc for results, my scan is still showing stable but TMs are still rising, she said she was not overly worried as scan is fine and all other bloods fine and it might be that she just needs to change my tamoxifen for letrazole. Got to have them re-done in 3 wks and she will decide on then depending on results. I'm not majorly stressed about it but wish they weren't rising. Any info/advice from you lovely ladies would be much appreciated.

Hugs Janette xxxxxxx 

Sarn123
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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

 

Marirose
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
Community Champion

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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
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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

Hope you get some answers soon Sue. X
scoobiesue
Member

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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