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Bone mets - please join in

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Re: Bone mets - please join in

Thanks for the welcome and  that very good advice  Vicki xxx

 

StickiVicki
Member

Re: Bone mets - please join in

Now your anniversary is over, Lynn, maybe you can focus on what to do next.  I always think that the pressure to be positive has almost the opposite effect!  No one can be positive all the time and I believe in letting it out and then just getting on with the next thing.  If you try and control the negative too much it will make you burst, so just let it out in your own way.  You can always use an old weepy film as 'cover' for a good cry.  If you let the negative out you have the space to fill up with more positive emotions.

 

Vicki xxx

belinda
Member

Re: Bone mets - please join in

Hello Lynn, Anniversaries can be unsettling. I'm glad our bc doesn't pick up on our feelings as I've spent lots of times feeling the same. But I don't believe our bc is that powerful or clever. It's good to hear you're feeling well and Letrozole is working and giving you good results. Smiley Happy

Lynnq
Member

Re: Bone mets - please join in

Belinda. I would just like to say a big thankyou for your posts. I was diagnosed with BC on the 9 Oct last year, and they then confirmed secondaries in bones about four weeks later.

I have just reached my one year since Dx anniversary, and although i have hidden it from my family i have been a little despondent. I know that i should look back over the year and think that i have been very lucky because on the whole i feel well and have had good results from Letrozole.

However i retired from work just one week before my diagnosis and i look back and think about all of the plans my husband and i had made and had to abandon. We have replaced them with other less ambitious plans but i feel for him as well because his life changed too.

I have felt a little guilty for not being positive, and for some reason i worry that not being positive is going to affect my BC......

So your paragraph beginning -"but I don 't think my bc knows if i'm feeling positive..............etc" Was good for me. I know that my positivity will return and hopefully i will have lots more anniversaries which won't make me feel so down.

I don't often post but i do read these forums every day. The lovely people on here manage to put things much better than i could.......
StickiVicki
Member

Re: Bone mets - please join in

Welcome CRJ, hope you get your appointment soon and the Letrozole works its magic.  If you are prescribed Zometa (aka Zoledronic Acid or Zoledronate) make sure you drink a lot of water before and after, and also ask them to put it through slowly to start off with (40 mins?) and then you should be able to get down to the 15 mins that it can be given in.  Your body will have more time to adjust to the new treatment that way.

 

Vicki xxx

2catlady
Member

Re: Bone mets - please join in

Hi,CRJ,sorry you had to join us.the lovely ladies on this site as fantastic and FULL of knowledge and Support.
Xxxxx
belinda
Member

Re: Bone mets - please join in

I'm so sorry you have to join us. I was diagnosed with bone mets and breast cancer together. I was out shopping, I'd been putting up with what I thought was a bad back and I thought I'd visit my GP, sometime. I was just into my 40's and I thought I was far too young to worry about breast cancer, any cancer. 

But while out my hip spontaneously fractured. I didn't fall over, I was rooted to the spot. An ambulance was called and days later I had a hip replacement, a cancer diagnosis and it was all such a shock, my head was spinning. 

This all happend ten years ago. I don't follow any miracle diet, do anything 'cranky'. I have just had some good responses to common treatments, both hormonal and chemo.

It took months for me to process my diagnosis, what treatment would I have, just what was in store for me. I've never asked 'how long?' because since my diagnosis there have been new treatments introduced.

Be kind to yourself, no-one can be 'positive' all the time. Positivity can help get you out of bed on a morning when you just want to pull the duvet over your head and not drive to the chemo suite. But I don't think my bc knows if I'm feeling positive or having a bad day, week, month.

We all find our own way of moving forward and living with this.

Ten years on I still, often, think how the heck did this happen?

We are a friendly and informative bunch of people.  Do stay in touch, shout out, someone always posts to help, agree, encourage, listen.

Aubergine
Member

Re: Bone mets - please join in

CJR2013 my heart goes out to you, that is sucha lot to get to grips with all at once (((x)))

 

Had the MRI scan yesterday, bit of a nightmare - one hour 40 minutes!   Felt really weird afterwards, dizzy and whoozy, and as if I'd been run over by a truck.

Having had problems with my back anyway, I think I've been in denial a bit about the fact that it's been getting worse without any good reason.

Still alternately numb/in panic

Guest user
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Re: Bone mets - please join in

Hi Julesie - thanks for the invite to join in. I was told I have spinal mets a few days ago. I had a bilateral mastectomy last month when 8 positive lymph nodes were found. My operation for lymph node clearance was cancelled last week when my scan results came through. I have just started on Letrozole and am awaiting appointment to start bone strengthening meds.

Anyway, hello and big hugs to fellow bone mets  people x

Julesie
Member

Re: Bone mets - please join in

 
belinda
Member

Re: Bone mets - please join in

My TM's are very accurate. Which is nice when they're going in the right direction but when they're not they can cause a lot of stress.

www.labtestsonline.org.uk

I have the CA15-3 every test and sometimes I also have the CEA.

StickiVicki
Member

Re: Bone mets - please join in

Reflexology ... lovely.  I used to have it every week because a friend did it for me, and we would have a good chat.  She was taken ill earlier in the year and hasn't been able to do it since and I really miss it, and the chat.

 

Cat Lady, hope the Zometa goes better for you today.  Remember they can also give it over a longer period of time, it they don't already, and you can work down to the 15 min sprint.

 

Vicki xxx

Chris007
Member

Re: Bone mets - please join in

Hi All - I too am a bit confused about the tumour markers. I was diagnosed in July and markers were slightly raised, changed from tamoxifen to letrozole. PET/CT at 3 months showed only subtle progression and no new metastases. However markers have continued to rise - in the 200's now. My symptoms much improved (had fractured ribs with mets in spine and pelvis too). Due to start E/E but delaying a month as going away next month. It is interesting to see some hospital dont do markers as my ONC said if it was only on the PET she would keep on with the letrozole. As you say it is such a waiting game - like sitting on a ticking time bomb. However ladies fill your lives with the positive and get out there and take help and as many complementary therapies as you can. I have my first refexology session tomorrow, Raiki next month - human touch is very powerful.

Chris x

2catlady
Member

Re: Bone mets - please join in

Hi,julieD,thank you I'm keeping my fingers crossed lm glad he's keeping an eye on me ,makes me feel a bit "safer"
Hi,Vicki, I'm taking your advice and drinking like a fish as it's zometa day and don't want repeat of last time.
Hi,to all the other lovely ladies too.xxxxxxxx
StickiVicki
Member

Re: Bone mets - please join in

Not all hospitals, or oncologists, use tumour markers because they are not always reliable.  It rather depends on the patient.  There are patients who have high tumour markers and the cancer is controlled or regressing, and there are patients with low tumour markers with a progression of their cancer.  IF your hospital uses them then it is worth asking if they are reflecting what is going on over a period of time, and whether they are accurate.  My hospital doesn't use tumour markers.

 

Any treatment can take a while to show any results for or against it working, which is tough because it involves us having to wait for results when we really wanted them last week!

 

If anyone is starting on bone strengthening meds make sure that you drink a lot of WATER (i.e. a litre) before and after the treatment.  In the case of Zometa (Zoledronic Acid, Zoledronate) which can be given in 15 minutes ask them to put it through much slower for the first few infusions starting at about 40 mins and then reducing the time.  This will allow your body to absorb the meds more easily and so reduce any side effects.  Just because it CAN be put through in 15 mins doesn't mean that is HAS to be put through in that time, so don't be afraid to ask for a slower treatment time.

 

 

Aubergine
Member

Re: Bone mets - please join in

Danica I only found out 10 days or so ago, it's scary isn't it. 

As far as I know my only planned treatment is change from femara/letrazole to exemestane plus pamidronate .  Have started the exemestane, not the pamidronate yet.

MRI is tomorrow to look more closely at the vertebrae.  Although I've had blood tests, don't know anything about tumour markers, wondering if I should?

 

Sorry have forgotten the name, I think it was it Julie? (apologies, can't see below post I'm responding to)  it's kind of you to ask, umm, no, not really got head round it yet.  Have all sorts of thoughts whirring.

It's a  very sudden change, isn't it, from 'yes it might come back but actually I'm doing well and might live another 30 years' to '...oops'.

belinda
Member

Re: Bone mets - please join in

Hello to everyone new. Smiley Happy I'm sorry you find yourself posting here but we are a supportive bunch.

Hi Danica, when I've had hormonal treatment it's taken around three months on average for my TM's to show if it's working. If you've only been on a treatment for a month, for me, it would be far too soon for my TM's to show anything.

What treatments have you had so far? I was started on hormonal treatments first and then when I'd been through Tamoxifen, Arimidex and Aromasin I started my first chemo.  So I had 5 years of hormonals before having any chemo. But some Oncs give a chemo to start with.

 

Danica
Member

Re: Bone mets - please join in

Hi all, I posted on here a month ago when I first found out I had bone mets. Thank you to everyone who posted lovely messages to me. Its lovely to know I'm not alone and have people going through the same as me.
I do have a question for those just on hormone and bone treatment how long did it take before your tumour marker started to stabilise? Mine keeps going up although its only been a month. I'm still working out what's the best treatment, and what else is available other than chemo.

JulieD
Community Champion

Re: Bone mets - please join in

Hello ladies,

 

Eve I’m glad you’ve found us, we will do our best to help and support you, if you have any questions please ask, there’s no such thing as a silly question on here. Sounds like you’ve got a good medical team, hope the PET scan goes well but if as you fear things have changed I hope they get next plan sorted for you quickly. Keep in touch

 

Catlady, a bit of a mixed bag for you today – hope you are coping ok. Good that one test showed an improvement and fingers crossed TM’s start to come down. Sounds like your Onc is keeping a good eye  on you.

 

Tambduh, I hope your appt went ok today, when you are up to it let us know. Hoping you won’t need our support but if you do we’ll be here.

 

Aubergine  how are you? Hope you are beginning to get your head around your news and that your team will have a plan in place for you soon so that you can feel that action is being taken to keep things stable.

Love to all the women on this thread, hope you are all doing as well as possible xx

Mildred1602
Member

Re: Bone mets - please join in

Eve
Hello! Sorry to hear of your latest diagnosis. Until all test results are in it's a waiting game to ensure you have the appropriate treatment plan in place. But good to hear you have confidence in your team & have access to excellent medical care. SBC is a bummer. Things can be stable for long periods & then there can be big changes. Please feel free to PM me.
A very big thank you for your special thoughts.
Ingrid
Lucy_BCC
Member

Re: Bone mets - please join in

Hi eve and a very warm welcome to the BCC forums

You are welcome to contact our Helpline from abroad, the number is +44 2076 200 077. Opening times are 9-5 weekdays and 10-2 on Saturdays (These are UK times). Do give them a call if you need any information or support.

The following link will take to you the BCC secondaries information pages which you may find helpful:

http://www.breastcancercare.org.uk/secondaries?utm_source=Homepage&%3Butm_medium=help_you&%3Butm_cam...

Take care
Lucy BCC

eve1966
Member

Re: Bone mets - please join in

Hi all.

I had Stage 3 grade 3 Breast Cancer in 2005, Mastectomy, reconstruction, chemo, radio and hormonal therapies.  I did not contact any Forum or Chats as over these past 7 years I totally threw myself into work (Primary Teacher) and family (4 children).  Also I live in Spain.  Mentality here was "get on and forget".  There were times that I felt friends and family thought, "Oh god here she goes again! Can't move on, it's away about the Cancer!" Nobody wanted to talk about it, so I tried to forget.  Awareness needs improving here, it will but slower than Uk.  However the treatment and health care is FANTASTIC!!  I have and still have a fantastic team.  OLÈ to them

However I have got it back! I was diagnosed with Thyroid Cancer Oct 2012. After they removed my Thyroids in November they found a Met from the Breast Cancer!!!   PET Scan came back with Mets in Bones (Pelvis, Femur, 2º Rib, Spine, Breast Bone, Kidney Glands and LUNG).  I have had Chemotherapy  + Herceptine Jan  to May weekly. Radio June on Pelvis for pain relief.

Now I am on Herceptine only every 21 days and pain killers.  

I have now retired from work and am searching for understanding people.  I have found YOU!

I am starting to really research what I have as I needs answers.  I have my results of my PET Scan on Thursday,  I feel that things might have changed, I am not feeling well, tired, a pain across my whole chest area.  Perhaps as my family and friends say "just anxiety".

I am a positive person and really want to spend the rest of my time to the maximum, hoping to share with you all.  Special thoughts to Ingrid XX 

2catlady
Member

Re: Bone mets - please join in

Hi, lovely ladies,been to see doc. today to find out if tamoxifen working. Tumour markers still going up but whatever they look at for bones is down! So I'm back on the waiting game as he is going to give tamoxifen another 4 weeks and if tumour markers up again he's changing to another hormone treatment.
Take care,Helen xxxx
I'm off to watch again fellow Geordie from SCD as need a laugh xxxx
StickiVicki
Member

Re: Bone mets - please join in

Hope you got some sleep Tamdhu.  Not an easy thing when you have appointments and tests the next day.  Hope it goes well today, and they can give you an answer so you know what is going on, or not.  Come back and let us know how things went.

 

Vicki xxx

JulieD
Community Champion

Re: Bone mets - please join in

Hi Tamdhu,

I wish you luck for tomorrow and hope that all will be ok for you, please let us know how you get on. Have you had any pain? Your lump could be all sorts of things unrelated to cancer, I hope you manage some sleep tonight and the news is good tomorrow. Best wishes

 

Guest user
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Re: Bone mets - please join in

hello,  i've been clear for 3 years and have discovered a lump on the bone on the top of my foot. Has this happened to anyone. Going to have it checked out tomorrow, Sleepless night tonight. x

Aubergine
Member

Re: Bone mets - please join in

I just wanted to say thank you for your kind replies; today my head's in a thick fog, but I'll be back when I can think properly.

x

JulieD
Community Champion

Re: Bone mets - please join in

Hi Aubergine,

I'm sorry you're in the position of returning to the site. It must be difficult for you having had your Mum go through the same. I had my primary in 1999, belt and braces treatment, chemo,rads,Tamoxifen,followed by prophelatic oopherectomy (ovaries removed). I was just beginning to allow myself to believe I was one of the women who never have a recurrence when I was dx with bone mets 3 years ago. It does take a while to get your head round it all,but I think most of us felt better once treatment plans were in place so I hope you get yours sorted quickly. It sounds lie your team are being proactive. I'm not sure that family/partners always do understand what it all means.I think the most important thing at the beginning is to look after and be gentle with yourself, then when you've got more used to the idea treatments etc you can start to explain your diagnosis to those you want to know.

Pop in whenever you want, we'll try to support you as best we can. I hope your next appt goes well and you can begin to find your own new normal. xx

belinda
Member

Re: Bone mets - please join in

Hi Aubergine, I'm sorry you find yourself here. But between us we are a mine of information and we are a supportive bunch too. Is your bone strengthener Pamidronate? I was given Pamidronate infusions before I switched to Ibandronate tablets. (My veins are not great for infusions.) Quite a few of us, me too, felt a bit flu like after the initial infusion but it tends to be only the first infusion that's a problem

It must, in many ways, be hard to come to terms with your news when you have already been through this with your Mum.

I've been living with secondaries, I was diagnosed with breast cancer and secondaries at the same time, ten years now.

There are new treatments that have been introduced since then. Best Wishes, be kind to yourself it takes a while to get your head around everything at first..x

Aubergine
Member

Re: Bone mets - please join in

HelloSmiley Happy

 

I haven't been here for  a long time, had rather hoped I wouldn't be back. 

Much as I loved so many ladies on here, I didn't really want to carry on living in cancerworld, I hope some of you can understand that.

 

The niggle was always there ;  mine was always high risk, stage 3,  grade 3, no sign-off after 5 years.  And now it's made itself known, over seven years since original diagnosis, it's been lying in wait. 

Two vertebrae, one at the base of skull/top of neck, the other vertebra no. 5  I think.  That's from CT and bone scan, MRI to follow on Tuesday, which may of course show more.

Plus there's a tiny 'something' on left lung, which I'm trying very hard not to think about, since it can't be investigated other than to do another CT scan in 3 or 6 months.

Good news is that liver scan was clear.

 

It's hard, as it's exactly what happened to my mum; her secondary (also bone) was 5 years after.  I've lived these seven years thinking that since I had so much more treatment than she did (she only had radiotherapy)  that would make the difference.

At the monent, pill has been changed from letrazole to exmestasane, and monthly bisphosphonates (pra...whatever it is, have yet to learn all the new names) will be starting.

Right now, I haven't got to grips with it at all, and I don't think o/h understands what it means.

 

 

HH
Member

Re: Bone mets - please join in

Hi every one thank you all for your replies, really does help, in answer to a question , I had a mastectomy in 2009, and this is secondary breast cancer in my groin, just been for CT scan to see if it is contained to the one area, I have one dose of radiotherapy on Monday, to try and strenghen my hip and have to use crutches for few weeks so it dont frature, then app to see oncologist week on weds for result and a treatment plan, I have been on arimidext for 4 yrs and apparently it's stopped working , no idea what I will be offered , thanks again to you all I really hope you all do very well with your treatments xxxx
2catlady
Member

Re: Bone mets - please join in

Hi,Belinda,fantastic news l'm so pleased for you that gives me hope that tamoxifen will work for me. Take care,Helen xxx
vercors
Member

Re: Bone mets - please join in

Wow that is amazing Belinda. may treatment work for many more years. I am ER+ HER2+., thus giving me hope. I have been stable since secondary diagnosis and as the onc at the time gave me a prognosis of " a few short years "; I find it difficult to look any further than a few months ahead. Thanks for sharing.

belinda
Member

Re: Bone mets - please join in

Hi, just to let anyone know, especially if you are er+ I'm stable at the moment on a hormonal which I last had in 2007. Just a brief history, I'm er+ her2- and was diagnosed stage 4 from the very beginning, in 2003. I had 4 and a half years of hormonal treatment to start with. The one that was the most effective was Arimidex, it worked for 3 and a half years before my tumour markers started to rise. At the time I was pre-meno so also had a monthly injection to halt my periods. I then had 4+ years of Capecitabine chemo and when the chemo tablets had stopped working, rising tumour markers again, I had my second ever chemo, Doxorubicin. This worked well, I had 8 cycles. My Onc then suggested trying Arimidex again as many years had passed since my last lot. I'm V pleased to say Arimidex is working again! I'm post-meno now. My tumour markers are now in the 'normal for anyone without cancer' range. So I look forward to a chemo break..who knows how long, it's 3 months at the moment. But posting this to let others know a hormonal that did work well for you, can, sometimes, work again after a long break. x

belinda
Member

Re: Bone mets - please join in

I'm sorry you are joining us HH. What a shock for you. As said by others we are a very supportive bunch and have a lot of information and experience between us.

Take Care it's such early days, it takes time to get your head around everything, be kind to yourself..x

StickiVicki
Member

Re: Bone mets - please join in

HH, you must feel shell-shocked at the moment, and probably a bit bewildered.  Is this your first diagnosis of any breast cancer, or the first diagnosis of the cancer having spread?  Either way it is not an easy time.  There is not set way of dealing with this, just your way.  Being angry, tearful, fearful, upset and so on are all perfectly normal reactions.  Our stories may all be unique to us, be we all that the basic understanding of how it feels to be told that your cancer has metastatisized to other parts of your body.  There are some things that we all just understand and 'get' which can be such a relief.  You're in the right place even if none of us would want you to need to be here.

 

Vicki xxx

JulieD
Community Champion

Re: Bone mets - please join in

Hello HH, sorry I missed your post earlier and very sorry you find yourself joining us, we are a helpful bunch though and will do our best to support you. Unfortunately, particularly at the start of your secondary journey, you will have loads of hospital appointments and it can get quite hectic and wearing, things do slow down a bit once you start treatment and you then find some space to adjust. Good luck with your appointments, hope they get treatment going for you quickly and do please come and share or ask questions whenever you feel like it xx

2catlady
Member

Re: Bone mets - please join in

Hello,HH,so sorry to hear about your recent diagnosis . There are lovely ladies on this site who are a great help and full of knowledge. I've only been a member for a couple of weeks and found great support on this site. Huge hug,Helen xx
June_BCC
Member

Re: Bone mets - please join in

Hello HH Welcome to the forums, I’m so pleased that you are finding the forums helpful. Whilst waiting for replies to your post maybe you would like to give our free helpline a call where the staff can offer practical information as well as emotional support. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00. Best wishes June, moderator

JulieD
Community Champion

Re: Bone mets - please join in

Hello ladies, this is a bit late but have only seen it myself there is a special live chat session for secondary women today between 2-3, if any of you can make it that would be good as we need to start making ourselves more vocal and this will give us a chance. If you look on site you'll see there are a couple more special live chats for us as well but can't remember the details. Hope to see some of you in a while xx

HH
Member

Re: Bone mets - please join in

Hi I'm not sure where to start and if I doing this correctly, I have been diagnosed with sbc, I have it in my groin this was just this Monday so all still very raw, and I seem to have been to hospital every day day since and have app for almost every day next week . It has made me feel I little better reading some of the posts on this site I would love to hear some of your experiences and any tips would be most welcome. Thanks for reading, if I'm in the wrong place can someone direct me to the right place
Porkie
Member

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I will told that had to be given by hospital as well but perhaps different health authorities treat it differently. Good luck Chris on EE - I have been taking for 4 weeks - was fine for first 2 then dreaded mouth ulcers arrived and I have been told to stop taking for a week then start again with a reduced dose. Really want to continue with it because the pain in my back and hip have all gone since taking so I think it is working but the ulcers are so painful. xx

Chris007
Member

Re: Bone mets - please join in

Hi Claire - that's interesting to hear about denosumab as I can't get GP to give it, I was told that it has to be given at the hospital as GP's not keen to give. Starting E/E this week. . . . . . .

Chris x

JulieD
Community Champion

Re: Bone mets - please join in

Hi Claire,

Good to hear from you. Glad op went well and you are recovering. They seem to be using/reusing Tamoxifen much more these days, it's a great drug . Sorry can't help re denosunab but think it is unfair to expect you to organize I think the hospital and your GP should be liaising and sorting out for you. Good luck x

2catlady
Member

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Hi,Pam,have a fantastic holiday to go with your fantastic news xxx
myfanwy18
Member

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Just reading about Denosumab and Tamoxifen.  I've got bone mets and have had other mets which have been resolved, I'm ok, just getting over op for recurrance but it was interesting how urgently they wanted to get me back on Tamoxifen after Arimedex,   although my Onc said there was no evidence  Arimedex wasn't working. It was my Breast Consultant who was keen on Tamoxifen.  Had my first Denosumab last week and had no side effects.  The only thing I'm worried about now is that I seem to have to organise  Densomub jabs  with my GP on my own.  Just don't know how that will work - anyone have experience of this?

 

Claire x

JulieD
Community Champion

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Pam that's great news!! Go and have a lovely relaxed holiday now xx

StickiVicki
Member

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Have a great time to go with the great news ❤️

Chris007
Member

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That's fantastic news - have a great holiday x x

pam01
Member

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Not sure if it was on this thread...but anyway!!!! Good news today... MRI scan of whole spine 20 months into capecitabine/zometa stable since start of treatment. Came straight home to to get my insurance (from MIA online for 5 nights in Granada)....go tomorrow night!....was willing to loose flights if necessary cheap easyjet to Malaga)and I could cancel accommodation with minimal loss until tonite....but no need....yehey!! Pam aka herbgarden. xxxx