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Bone mets - please join in

JulieD
Community Champion

Re: Bone mets - please join in

Eve I might just join you swaying to the music. To all my lovely honey friends hope you have a comfortable enjoyable Christmas, she´s hoping 2014 will be a kind year xx

Mildred1602
Member

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And the same to you vercors!

Just go with the flow & enjoy the moment.

Ingrid xx
vercors
Member

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Wishing you all my boney friends a peaceful christmas. Hope you get a lot of love and help today. Xxx

pollym
Member

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Thanks Vercors and Nicky - yes, it's a funny place for me to be.  The scan picked up lots of arthritis in some very strange places!  However, the right hip uptake has not been put down as arthritis so I can only think it is something else!  As you say, I am in very good hands.  They may do an MRI I suppose or another CT which is more detailed, I dont know really.  Otherwise just wait for the repeat pet-ct.  We'll see.

 

Hope all of you who contribute here/or just sneak a look have a loving and peaceful Christmas and New Year. 

xxxxxxxxxxxxxxxxx

 

 

 

eve1966
Member

Re: Bone mets - please join in

Hi all,

It's nearly christmas and I am celebrating that I have done a full year!! DX 13th Dec 2012 with MBC.

 

I have no new primary tumors, the Stomach biopsy came back as imflamations.  I am still responding to treatment Herceptin so here's to 2014.

I wish all you lovely bone ladies the most wonderful christmas days that you can possibly have.  I know that this year I am going to rejoice, sing, dance (well maybe just sway to the music). Get drunk and hug and kiss all those that I love.

Also I want a tatoo!!!

I send you all from Spain the best for the new year.  Less pain and treatment that continues to work. 

Love to you all. xxxxxxxxxxxxxx

vercors
Member

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Thanks Ladies, I am now looking forward to Christmas Smiley Happy

Great news as well Buffy. I hope you are not overdoing it at work. I work full time from home, I don't think I could be in an office all day everyday anylonger or commute for that matter.

 

Pollym, 

I know too well what you are going through. It took me a all day to realise that I was stable and that my lump was not cancer as in our head everything has to be cancer. In my case my onc thinks it is arthritis. I am also trying to take into consideration that I am also ageing (just had a big landmark birthday starting with a 5, a couple of weeks ago) and together with the fact that I have been articifially menopaused, my body is no longer what it once was. 

I figure,  if it does not bother me AND it is not cancer, I am now allowed to relax. 

I hope you are able to do the same and enjoy each day as it comes. 

XXX

nicky08
Community Champion

Re: Bone mets - please join in

Great news Buffy and vercors, it's what we all want to hear (either about us or others!) and I'm sure it will make your Christmases even better than it was Smiley Happy

 

Hi pollym - yes it's a bit of a mixed feeling when you get good and unsure news at the same time!  All I can say is that it sounds like you have a good oncologist who is keeping a very close eye on you - which is far better than scans being dismissed as inconclusive.  I'd enjoy the moment if I were you and know you are in good hands and, presumably you can contact them should the need arise before your next scan?  Also, that you're back on Tamoxifen will give you some peace of mind.  Areas showing up on scans can be non cancer related as far as I know such as wear and tear or other bone changing conditions and I'm sure the last thing they would want to do is stick you on inappropriate treatment until some other proof is seen.

 

Wishing all bone mets ladies (as well as other mets ladies) a Happy and peaceful Christmas with your loved ones.

Nicky x

 

pollym
Member

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Hi all,

I posted a couple of weeks ago as I was going for a pet-ct scan.  I had pain in my right arm and weakness, and have also become sore over my left chest wall area.  I got my results today and my onc said that 'nothing dreadful' has been reported.  In the areas I had symptoms nothing was highlighted.  However, there was mild uptake in my right hip which they cannot discount and say is not cancer.  They are therefore going to have a team meeting with experts to look in more detail at my scan - she said I may be sent an appointment for another scan of my hip but she wasn't sure about this.  In any event I will have a repeat pet-ct scan in 4-6 months.  I have also been put back on Tamoxifen which I finished last year after 5 years.  She is doing this no matter what my results due to the fact that research now shows a benefit to take for 10 years as I'm sure you all know.  She said if it is bone mets that the Tamoxifen will be good for treatment anyway.  I am seeing her again in 4 weeks to discuss any further scans.

I don't know what to think really - at first I was really pleased as I have had a bad feeling over the past couple of months and it seemed like good news.  On reflection I suppose I am now worrying about what this area could be.  I thought that the combined pet-ct scan made it much easier to discount false positives?  I wonder if any of you have any experience of this which you could share with me.

Thanks

Pauline xx

 

lizH
Member

Re: Bone mets - please join in

Hi ladies,

such good news to hear! Stable is such a wonderful word for us .
I am having my 2nd faslodex injection today and hoping i get good results from this drug. Felt nauseous with the first one and a lot of fatigue but fingers crossed this one is better!

one week till Christmas, how did that happen??!!!

love to all
Liz xx

Lucy_BCC
Member

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Thank you 2catlady
Happy Christmas to you too from all of us here at BCC

Best wiehes
Lucy BCC

2catlady
Member

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Fantastic news,Buffy and vercors.xxxxx
Happy christmas to all the lovely ladies on here and the BCC staff xxxxxx
belinda
Member

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Fantastic news Buffy and Vercors!!
So pleased for you both..x..x..
JulieD
Community Champion

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Good to see some activity on the thread and great news both vercors and buffy! Smiley Very Happy

 

Hope you are all pacing yourselves with Christmas preparations - we need to make sure we have enough energy left to enjoy the festivities!

 

In case I don't get cack on before, I wish you sall a painfree, contented Christmas xx

Buffy3
Member

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Great news Vecors xxx
Buffy3
Member

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Hi, I haven't posted for a while, back at work and getting on with life. I've been stable since chemo finished in Feb 2013, letrozole, zoladex and zometa maintenance plan working at mo. Scans showing lump still reducing in size. So am pleased to say I am a stable mabel. Enjoy the xmas festivities, Buffy xxx
vercors
Member

Re: Bone mets - please join in

Hi everyone, it has been quiet in here for a while.
I have stayed away form here as I was quite worries as I found a new lump in my sternum. I managed to get an appointment pretty quickly with onc who ordered MRI and CT. Those took place last Friday and results were yesterday. i just could not believe my ears when she said I was stable and even better than that my bone met show more signs of healing. The lump is still there but it might be arthritis. I took all day for the news to actually sink in. I am now starting to look forward to Christmas.
Hoping everyone is painfree and spirits are up. Xxx

SueCheshire
Member

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Hi sticki

Had my eyebrows done so pleased with them

Xx

Julesie
Member

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Good luck Pauline. Let us know how you get on. Xx
pollym
Member

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Hi julesie, thanks very much. I'm having my scan on Tuesday with results the Wednesday after so not too long to wait now. X

Julesie
Member

Re: Bone mets - please join in

Hi Pauline
I think it's better to check out any aches and pains that don't go away so you're definitely doing the right thing. It's good that your oncologist is going a PET/CT scan as they work in different ways and a PET scan will show things up at a much earlier stage. With a PET scan you get injected with radiotracer which looks for metabolic activity so any cancerous areas often show up much earlier than they would with just a CT scan. (See link below which gives you more details of PET scans.). It's horrible that once you've had cancer, the slightest ache and pain can set off alarm bells but I hope your aches turn out to be a false alarm. Good luck. Xx
http://www.medicalnewstoday.com/articles/154877.php
pollym
Member

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Hello everyone, just looking for a little information and advice.  I am having a PET-CT scan (which I had not heard of) soon to look for any sign of secondaries.  I am almost 7 years from my initial primary diagnosis, had FEC, taxotere, radio, Herceptin and 5 years Tamoxifen.  Finished Tamoxifen 1 year ago. 

 

My symptoms are around my chest and back, just all kinds of aches and pains and a tenderness to touch around the site of my mastectomy/breastbeone/ribs? for past couple of months.  I have wondered if it was regeneration of nerves but is it possible for this so long after my op?  I have also had a painful upper arm/elbow on other side for about 2 months with a slight pain sometimes in shoulder - my GP didn't know what it was but mentioned compression of nerve?  The pain on the right arm is constant every day when I move my arm.  Would this kind of thing be a possible symptom of bone mets?~The pains come and go in chest and back. 

 

I have had a clear chest x-ray and my bloods are okay.  I am not overly anxious as I am well aware that there are people with much bigger worries than me - but I am stressing a little.  I was prepared to wait and see with the pains but my onc thinks I have waited long enough!  Any advice would be welcome.

 

Hope it is okay to post here - I couldnt find any threads any more for worries about secondary breast cancer so I hope nobody minds me posting here.

 

Thanks

Pauline x

2catlady
Member

Re: Bone mets - please join in

Hi, Vicki,I like the sound of a teddy tattoo. As Geordie said go for it.
Geordie,my hubby would suggest the NUFC shield if I got a tattoo lol
Take care xxxxhugs to you both xxxx
StickiVicki
Member

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I am thinking about getting my eyebrows tattoo'd because they are a bit of a mess and I am fed up with eyebrow pencils.  Possibly I should get a Teddy Bear tattoo because that is what I am coming back as ... a pampered Teddy. Heart

geordiex
Member

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I got my nose pierced and half my leg tattoo'd after my primary diagnosis 4 years ago and am thinking of another ,already had one and just had my eyebrows done again ,go for it I say xx

2catlady
Member

Re: Bone mets - please join in

Hi,Vicki, you go and do those .have every thing pierced and several tattoos. After 6 years of never ending treatment you deserve a sports car.even if you can't use it.
How insensitive moving you out of your office,some people are heartless.i hope the councillor helped.
Sending you a huge hug and knickers to the office stealer ,Helen xxxxxxxxxxx
StickiVicki
Member

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Going through a bit of a 'Metastatic Breast Cancer mid-life crisis' as I come up to 6 years since my MBC dx.  Finding it difficult to concentrate at the moment, and keep getting the urge to buy a sports car (not that I would ever be able to get in or out of one of those).  Maybe get a tattoo or have my nose pierced?  Seeing the counsellor at the Hospice who is very helpful, and because I have seen him before I don't have to go over my back story.  It was all set off my being moved out of my office at work, don't think I ever want to go back.

 

Vicki xxx

2catlady
Member

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Hi,Vicki,thank you,I'm hoping this will work I've been googling like mad. I haven't seen you posting on here for a while ,I hope you are keeping well ,
Huge hug,Helen xxxx
StickiVicki
Member

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I tried to reply earlier but it doesn't seem to have come on to screen.  Another thing to consider is that Tamoxifen and Letrozole work in very different ways, so there is no reason to expect Letrozole not to work.

 

Vicki xxx

2catlady
Member

Re: Bone mets - please join in

Hi,vercors and roxy,thank you for your support it has made me stop panicking as much.xxxxx
Vercors ,I'll be keeping my fingers crossed for you xxxxx
Thank you lovely ladies and huge gentle hugs to you both,Helen xxxx
roxy12
Member

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Hi 2Catlady,

Sorry you are going through a worrying time. I was put on Tamoxifen 2 years ago and it didn't work for me. I have been on Evorilmus and Exemestane since then and have had stable results although I may be due for a change after the next scan. ( in two weeks ) It has lasted about 17months and I am thinking that the Evorilmus may be the other drug he intends to use but am not sure. Exemestane is another AL like the Letrazole and it has worked for me after the Tamoxifen so try not to worry. Easier said than done though. I know! Like you I am ER pos PR pos and HER neg. Take care. x

Janet_BCC
Member

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Hi 2catlady

 

I'm sorry you are feeling so down.  It might help to talk things over with one of our helpliners.  They'll be able to offer you practical information and emotional support.  The opening times are 9-5 on weekdays and 10-2 on Saturdays.  The number is 0808 800 6000

 

Very best wishes

 

Janet

BCC Moderator

vercors
Member

Re: Bone mets - please join in

Hi 2catlady, 

Tamoxifen failed me after 4 years and I have been on Letrozole for 2 years now. It has been really good for me. No furhter spread until I found a lump last week, but I don't know yet whether it is spread or not. Clutching to the hope that it is nothing nasty. I am also ER+ Her2+ 

I know how the mind work overtime and I am not going to lecture you on staying positive, but sending you a gentle hug, I know how you feel. xxx

2catlady
Member

Re: Bone mets - please join in

Hi,lovely ladies,we'll tumour markers sky high,so after playing the waiting game of watching them rising every month by 100 apart from last month when they came down 20 so after 5 months on tamoxifen.the doc has decided tamoxifen wasn't working.and last months was a blip. I'm now getting zolodex injection tomorrow while I get my zometa and then starting Letrozole in a weeks time.
I'm sure I've read a post somewhere on here that says there doc said if Tamoxifen doesn't work other hormone treatments won't work or the cancer adapts really quickly.
I'm getting my self in a right panic.
My doc said he'll give this new treatment 6 weeks to see if it works. He also said he may add something that acts on the protein receptors at that time. Haven't a clue what he's on about!!!
Does anyone know what this is? (I'm er & pr positive and HER negative)
He was in such a rush as an hour behind on his appointments he didn't explain anything fully ,I didn't even make it to his office,just the tiny room next to it as he had next person in his office.
My head is all over the place,thinking the cancer has had five months unchecked to spread .
Feeling really down,Hugs to you all xxx
belinda
Member

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Hi again Chris, thank you and good luck with your results next week. x

Chris007
Member

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Hi Belinda - thank you so much for your reply it is always so encouraging to see people out there 10 years on. I think I agree with you on the quantity issue as I have young boys and am so well at the moment. Will discuss with my Onc when I get results next thursday - will keep you in the picture.

I wish you good health and good luck. Chris x

belinda
Member

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Hi Chris, I have slow growing cancer too. I was diagnosed with bone mets in 2003.

My Onc and I know my markers are very accurate and I'm reluctant to let mine have too long on the rise because I'm concerned my bc may be spreading to new places or causing further problems for my bones and mobility later on. I had 4 and a half years of Capecitabine. It has side effects but I kept my hair throughout, it did not even thin and I used all the creams recommended for this chemo. Capecitabine can cause hand foot problems. My main side effect was cracked and sometimes painful to walk feet. My hands were never a problem. I had no sickness, no tum upsets and none of the crashing tiredness you often get with IV chemo. The dose can be tweaked as well if you have many troublesome side effects and a slightly lower dose won't make the chemo less effective.

After Capecitabine failed I had my first IV chemo, finished this summer and I'm now full circle and back with hormonals. The treatment I'm on now is Arimidex which I last took about 6 years ago. The gap in between has been enough to allow Arimidex to be effective to work for a 2nd time. Smiley Happy

I could have tried a couple more hormonals before starting Capecitabine but asked my Onc what would be the most effective treatment if I wanted quantity over any less quality of life. I still opt for quantity over quality of life at the moment but so far I have also enjoyed a good quality of life. We are all different in what we see as important and this is only my opinion. Good Luck with whatever treatment you have next.

Take Care, Belinda..x

Chris007
Member

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Thank you ladies for your replies - I feel (maybe wrongly) that I should exhaust the hormone therapies before going down the chemo road. Also as my original tumor was grade 1 how effective will chemo be as it tends to work better on the faster growing cancers. I just don't want to make myself ill with the treatment when I don't have many symptoms from the mets. X x

Porkie
Member

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I agree with Julie that TM's are only part of the picture. My oncologist looks at them but would not change treatments solely on them if I am feeling ok. I was diagnosed with primary/secondary in bones in May 2011 and originally had just letrozole but after progression I have moved onto EE combination. The side effects for me have been similar to some chemos with mouth ulceration and tiredness being the two main ones. Due to mouth difficulties I am now on a reduced dose of 7.5mg(from10). I have not had Cap so do not know how the treatments would compare. Good luck with whatever you decide and best wishes to all the other boney ladies out there. x

JulieD
Community Champion

Re: Bone mets - please join in

Chris and 2cats, sorry your TM's are on the rise, don't forget they are only part of the picture, it's good that you are feeling ok within yourself. Hopefully scans will give a picture of what's going on. Sometimes is just a matter of changing hormones if you are hormone positive. Your Onc should be able to give you your options and explain the reasoning behind the choice. Not had EE or Cap but plenty of other women on BCC site have and both seem to be reasonably well tolerated and work for some people for quite a long time. Good luck to you both, let us know how you get on xx

2catlady
Member

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Hi,Chris,I'm sorry I can't give you any advice as I don't know anything about the new treatments. I'm in sort of same boat,markers going up but feel fine (on tamoxifen since June for primary and bone mets) my 'D' day is this Monday if tumours have gone up we are changing treatment.
I hope your results are good and you can stay on your present treatment. The other lovely ladies will be able to give you more help and advice.
Huge hug to you xxxx
Hi,Roberts,that's great news for you and your mum,hugs to you both xxxx
Hi,Liz I agree with Julie,don't be rushed ,find out all you can first.xxxx
Huge hugs to all the other wonderful ladies on here too xxxxx
Chris007
Member

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Hi - can anyone help? My last scan showed only subtle progression of bone mets but my tumor markers have continued to rise since diagnosis in July. I have been reluctant to change treatment (letrozole) as pretty symptom free at present. However had scan on tuesday and will see next week if any further progression. My choices will be either E/E or capecitabine. I was diagnosed in July after 3 years of tamoxifen and have had the letrozole since July. Any advice would be apreciated. x

JulieD
Community Champion

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Liz yes I think it's wotyh finding out what the tral involves, don't be rushed into any decisions though, you'll need time to think.

Roberts good news about your Mum, you must be feeling relieved, thanks for keeping us up to date.

lizH
Member

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Thanks ladies for your reply.

 

Good to see you on here Nicky and am sorry that it has gone to your liver, wishing you luck.

 

Smartie - Thank you , i shall meet up and see what the trial is about and will decide.

 

All the best xx

Guest user
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Hi, just a quick message to say that mum went for her check yesterday and thank god all went well, the bleeding that I mentioned can happen after treatment and can be one of the side affects but what made it a bit worse is that she had an infection, apart from all of that things are looking up again as yet again is stable and the cancer is behaving. Thanks so much for your advice xxx
Smartie
Member

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Hi Liz

I had Faslodex after progression in my bones in 2007 (had Aromasin for 12 months before that stopped working). Faslodex was really effective for me and I had no further progression until Jan 2012 so an amazing 5 years, way above what my oncologist thought. I also found the side effects to be minimal and apart from a sore bum every month I was able to live a relatively normal life (sore bum minor issue!).
As Nicky said do look into the trial and see what it entails. I know some ladies have posted on here for whom Faslodex has unfortunately not been effective but you never know how you will respond so it may be worth a go.
If you need any further info about it let me know
Good luck
Smartie x

nicky08
Community Champion

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Hi Liz

Sorry to hear you have progression in your bones, but at least it's still keeping to those!  Mine has moved to the liver and I'm currently on Capecitabine.

I know there doesn't seem to be many ladies on Faslodex so I can't point you in the right direction unfortunately, maybe start a new thread to see if you get any answers?  As to the trial I guess that will depend on how you feel about it and what the trial is determining.  Again, I'm sorry I can't help with that but maybe some other boney ladies can.  Good luck though with whatever the treatment is and keep in touch.

Nicky

lizH
Member

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Hi All,

 

Not been on here for a while but want some advice and support.

 

Just back from Consultant and i have had progression in my bones. She has given me a couple of roads to think about going down.

 

One is to start folsedex(?) sorry not sure of spelling. 2 Injections very other week  but she also asked if i was interested in seeing someone at Charing Cross and going on a trial. I  obviously need to see what the trial involved but wanted to see if anyone else are in the same position or have had these options.

 

I have been on Arimidex for 2 years

 

thanks and love to all ,

 

liz

 

2catlady
Member

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Hi,Julie,hope your tummy settles down that's a nasty bug.We had our first snow in the NE on the coast yesterday didn't lie but blinking freezing.
To all the other lovely ladies too huge hug xxxxx
JulieD
Community Champion

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It's been very quiet on here. Just looking in to say hello to all my boney friends and hope you are all coping. Besides having a really nasty upset tummy for the past 10 days or so I'm doing ok.Getting colder down South but no snow yet. Keep warm girls xx

 

StickiVicki
Member

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If it is basically two working weeks until someone sees her at the hospital they please call today and get an earlier appointment.

 

If mum has a cooperative GP then it might be worth getting them involved to get things moving, or a referral to the local hospice.  Don't panic at the mention of hospice they are all about making the most of life until the very end, and most of the pain control advances made over the last couple of decades have come from the hospice movement.  They are THE experts.  Hospice also has counselling, alternative therapies and other things available for the patient and the family to help with the stresses of living with MBC.  You will need a referral from your GP and the hospice should be able to respond much more quickly than the hospital.

 

Good luck, Vicki xxx