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Bone mets - please join in

springsummer
Member

Re: Bone mets - please join in

Dear Chocolate

 

thank you for the update on Helen. I am so sorry to hear the news. Please let her know my thoughts are with her and I am willing she can cope with the Taxol and be able to go on a trial

 

 

Jam
Member

Re: Bone mets - please join in

Edwina hope everything ok just wonder if he's one of these people that try to frighten us and put thoughts in our heads(as if we don't have enough of our own). My dentist said it was quite rare when I discussed it with him and someone I know slightly has just been though it all. So fingers crossed for you xJanetx
Jam
Member

Re: Bone mets - please join in

Just to let you ladies know for future reference my raised calcium level made me ache and hurt everywhere a different place each day and was getting worse no pain relief seemed to work . Lucky for me I had a blood test for my infusion because it is quite dangerous if left. Was given fluids yesterday and responded well, have had more today and they've let me come home as long as I drink and drink and drink. The aches and pains have decreased significantly. And I now realise it was my own fault for not drinking enough especially when it's warm. So if you're told you should drink plenty please do. I will have another blood test on Thursday and hopefully will be able to have my zometa infusion xJanetx
Chocolates
Member

Re: Bone mets - please join in

Oh Edwina, that sounds very scary. I think it might be a good idea to hold on to the fact that he is not sure at the moment. There still could be another explanation. A scan may well confirm that this is nothing worse than a severe infection which has affected the nerves. I know it's silly to say but try not to worry too much. I've got my fingers crossed for some positive news xxxx
edwina64
Member

Re: Bone mets - please join in

Hi everyone, sorry to hear Helen is still suffering praying the chemo will work for her xx

I went to the hosp today to see the facial team re my toothach. The xray didn't  show much so he said the fact that my lip and chin have gone numb could indicate cancet spread as 70% of people with this are from breastcancer mets. Hd said he would take my wisdom tooth out but because of denosemub it might take time to heal, but then said if it is cancer it might not  heal at all! I wonder if anyone has had this or any dental treatment. I feel so worried have to have a scan of my head...sounds so serious , what next.

Lynnq
Member

Re: Bone mets - please join in

So sorry to hear that Helen is unwell, my thoughts are with her. Hope the new chemo helps and that she begins to feel a little better.
She has given me so much support always, but particularly about 18 months ago when I really needed a virtual friend. Like we often say it is easier to speak to others on this forum than close relatives.
Barton
Member

Re: Bone mets - please join in

Oh, Chocolates, thank you for the update on Helen. So sorry she is suffering at the moment - please give her all my best wishes for the taxol to work, with few or mild se's (preferably none!). Thinking of her. Hugs to Helen, and you, too. Barton.x

Marirose
Member

Re: Bone mets - please join in

Thanks Chocolates for the update on Helen I don't know what we would do without you keeping us in touch with Helen's condition. We really are sending vibes for her to get a little better she has been such a strong voice on this web site and we all love her xxx

funnyface
Community Champion

Re: Bone mets - please join in

I'm sorry to hear that Helen is so poorly. She is such a fighter giving it her all! Janet best of luck with your calcium issue. Never heard if it before this. Sarn, WOW that sounded scary and a bug mess. Take care and feel better soon. My oncologist wanted to biopsy my lung again to recheck how hormone positive I was before I started letrozole because it's been almost 10 years since my cancer was biopsies. I told him NO! I already have a partial collapse of my right lung and in 2012 the rest of the lung collapsed. It did manage to reinflate on its own in a few months. I'm not taking any chances. I told him every time he gives me a new chemo it's a luck of the draw if it works or not, so I'm going to go with the same luck if this hormonal treatment works or not. My original breast cancer in 1995 was ER + and 10 years later eith nets it was the exact same, so I'm going with 10 more years probably hasn't changed. FF

Stillhere
Member

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My love and prayers to Helen too, Chocs, and good luck to everyone with results and treatments, big hugs to us all xxx
Jam
Member

Re: Bone mets - please join in

Thanks Nicky and Chocs am just waiting to be seen by Drs now so should soon have the drip up and running. Chocs please send my love and best wishes to Helen. Hope everyone else coping ok today xJanetx
belinda
Member

Re: Bone mets - please join in

Hi Chocs, thank you for the update on Helen. She has such a fighting spirit, still, after all she has been through, thinking of you Helen, with love. X
And thank you too Chocs, you have been such a support for Helen, a friend indeed. X
nicky08
Community Champion

Re: Bone mets - please join in

Hi, thanks again chocs, for the update about Helen. It is so worrying to hear how she is so frail but I hope taxol will work for her and she can get her strength back up enough for a trial or that it works for her and she doesn't need a trial just yet. Always thinking of her, and missing her sparkly words and presence.
Janet/Jam, there was another lady on here a good few months back that had problems with rising calcium levels and needed to be in hospital to get them back down again. She was also on zometa but the one change that helped her, after lots of IV fluids etc hadn't, was to go on to Denosumab - this bone strengthening treatment works by removing calcium from the blood to give to the bones - or that's how my onc described it to me. Most if us have to be on calcium supplements whilst on it so our calcium levels don't get depleted. Worth mentioning to your team?
Hope everyone else is coping with life whilst dealing with the rubbish that this disease throws at us.
Nicky x

rosie53
Member

Re: Bone mets - please join in

Oh chocolates thank you so much for keeping us updated on our wonderful Helen, it's just not fair she has been through so much and she is such an inspiration to everyone on here. I know she will fight this bugger because she is so strong and positive. Please give her my love and best wishes and tell her that all her cyber buddies are holding her hand.

Hugs Janette xxxxxxx 

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

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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

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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

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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

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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