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Bone mets - please join in

dawnhc
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Re: Bone mets - please join in

Hi saffronseed - so pleased for you at the good news. It is a strange place to be in when you have built up in your mind that you have to cope with a 2ndary dx, to then be told all is o.k. So don't worry about how you feel just now - it takes time.

Hi Maroulla,

I think you would probably get as many different answers as you got posts on this subject.

I think tumour markers are just one tool in the dx basket. They can measure through a simple blood test if there is unusual cancer activity going on. The one I usually have done is CA15-3 and I think up to 30 is considered in the range of normal. But they are not always a reliable marker which is why a lot of consultants don't like them. Even though recently I have had progression diagnosed, my tumour markers have not given a clue and have stayed normal. As I said it is just one tool that they can use, and an unusual pattern in regular testing would certainly indicate problems - they can rise into very high figures.

Personally my 2ndaries (bone mets) didn't give me much warning! When they were diagnosed they were extensive affecting all my spine, head, ribs, collarbone, hips & pelvis! It was only when I got severe sciatica that it was investigated and found to be bone mets. I think if you have unusual pains that last for 2-3 weeks it would be wise to have it investigated. It just goes with the territory that we worry about every ache and pain once we have had bc. There isn't really much to be gained by wanting to have regular scans because what may not be found there one day, could be there the next!

Dawn
xx

saffronseed
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Hi everyone I wanted to post a message on here as I have had so much support from you all and to let you know how much is has been appreciated.

I had my 'second opinion' appt today and met with a new consultant. He had given me the most fantastic news in that he had re checked all my scans and test results, disussed the findings with the MDT and he says that he is certain that i do not have bone mets and that the hotspot is probably a bit of arthritis. I did push him on it and I don't just want to be told 'good news' and he was adament in his diagnosis - and even said they were prepared to put it in writing to me if I wanted!

You can imagine how pleased I am to get this news and whilst I know bone mets can be managed and there are ladies on here that are living with them, its such a relief not to have this hanging over me. It hasn't sunk in yet and will take a while I think as over the passed couple of weeks I have almost come to terms with my diagnosis. Take care everyone and again thank you all for your support xxx

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Hi Ladies on this thread. I hope I am not being rude by jumping in here and asking some questions about secondaries as this is something I can't get my head around. I was thinking of starting a thread but hey maybe some guys on here can help me out...

How do you know if BC has spread?? I believe it is called secondaries or mets??

I was dx in June 2010 had WLE DCIS, 12mm, grade 3. 1 lymph node involved. Finished x5 FEC on 22 Nov 10 and have just started rads.

My Onc said I don't need a scan as it was caught early. He recently mentioned about tumour markers. What is this, I asked. Tested in blood. He said mine are 'normal'. Can someone explain more about tumour markers?

How did you find out you had secondaries...was it by having unusual aches and pains etc...

I just can't stop thinking about this.... any answers/advice appreciated...sorry if I muck up your thread!!

Maroulla

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It's now about a month since my last chemo and I'm struggling to cope. Since the chemo didn't get rid of the primary lump altogether, I find myself feeling for it every day, in fact several times a day and wondering if it's got any bigger. I also keep finding new "lumps" which my husband sensibly points out are tendons or in the latest case, the bottom of my shoulder blade. I manage to convince myself that every new spot or blemish is a skin met or every stomach pain is a liver met, etc. I've got a scan on Tuesday and the sensible part of me knows I should wait for the results before coming to any conclusions about whether the chemo has worked or not but I can't stop thinking about it. I'm also in more pain than ever in my back and ribs on both sides which is strange because I was asymptomatic before diagnosis. Is pain something I have to live with now or does it flare up and go away at intervals. Is this just a bad patch or a sign of things to come. I feel as if everything is up in the air at the moment and my life is on hold but for what I don't know. Is this how most people feel after chemo and how do people deal with these feelings. I really don't know what I'd do without this community, even when I'm only lurking and not taking part. I don't post very often and only seem to when I'm feeling low. I hope one day I will be able to post something more uplifting and positive, but in the meantime it just helps knowing I'm not alone. Thank you all,
Sharon

finty
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Hi Fran

There have been a few diet threads in the year or so I have been here - but they tend to get quite heated! If you liked that website, then you will probably find this research interesting:

http://www.ncbi.nlm.nih.gov/pubmed/16094059?dopt=Abstract

The problem with most cancer diet research is it is either testing a single food in a laboratory (test tube or on animals) and it is impossible to know if the results can be replicated in humans, or it tends to be observational - ie take a group of people, ask them what they eat and assess their health. The above research trial is the only one I have found that is interventional - that is, it takes a group of people with early stage cancer, that are not receiving any medical treatment, and puts them on a specific diet, then compares their outcomes with a control group. I think this is the closest we are likely to get to finding out whether a cancer diet works - and the results are very encouraging. The diet used for the research is very similar to that recommended in the Plant and Servan Schreiber books you mentioned. Most interesting of all. I have yet to come across a single medic working in oncology that has heard of this research!

I've just linked to the abstract, if you'd like to read the whole report I can dig it out for you.

finty xx

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Flinty

What an excellent website and I love it when different sites and books agree with diet ideas and this one really helps with the research evidence. I'm glad this thread has brought up the issue of food as when I first started using BCC forum over the last few months diet did not seem to feature much - and it's been one of my main focus of positive self-help with Dr Jane Plant's book and Dr David Servan-Schreiber's book being my main influences.
A highlight of my New Year was making an "anti-cancer" chocolate cake with beetroot for sweetness and not dairy or flour that I found in Conner Middelmann-Whitney's new book "Zest for LIfe: the mediterranean anti-cancer diet" - my family did not recognise the beetroot in it and when I told them were amazed it was a main ingredient of a lovely gooey chocolate tarte!!
Happy cooking and eating and health!
Fran

finty
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Hi LL

Yes, I'm a great believer in diet as an extra weapon in dealing with cancer, so have made radical changes. Let me know if you'd like some links to some reading material, but this website is a good place to start - it collates all the research (pro and con) on diet and breast cancer:

http://foodforbreastcancer.com/

finty xx

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Yay! Tell me, have you changed your diet or drinking habits since dx? just curious. Sorry for all the typos,etc... On my iPad!!!! (yes, xmas pressie!). LLx

myfanwy18
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Thanks Alex, look forward to hearing from you.

Love
Myfanwy x

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Hi Myfanwy

I have been following your posts and I tried to send you a PM but I think it got lost in cyberspace.

I live in Chelt as well so I am guessing we both go to the same oncology unit.

Will try and PM you again.

Alex

myfanwy18
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Hello Alex,

So pleased to hear your news, you are quite an inspiration to me, don't know if you've read my previous posts but I'm finding it just a wee bit of a struggle at the moment. I'm also having to put up with work being taken away from me at work, at least one of my bosses is not amused by this, bless her, but I was sat there this afternoon and the atmosphere wasn't good in the office, just thought I could do without it really, I found work a bit of a refuge up until then but now it just seems to be adding to the stress. I'm becoming quite annihilistic which isn't good, think I need a bit of a pep talk from folk on this site.

Anyways there we have it.

Love
Myfanwy xxx

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Hi everyone,

I have not posted for a while but I have been reading comments. The be courageous, dare to fight quote posted by Lollipop is inspiring.

I had my tumour marker results today, they are 15 so I am feeling quite good especially as it is now 2 years and 4 months since diagnosis. Luckily I don't have any symptoms, so carrying on as normal. I am hoping this will continue for a good while longer. I am on mixture of cheap stuff (tamoxifen) and more expensive stuff hercpetin and pamidronate.

And another good news story. My sister gave birth to a healthy baby boy yesturday, having been told she would not be able to conceive after having treatment for BC. His name is Isaac. Its a bit of miracle as she was misdiagnosed for 3 years.

Happy new year everyone and lets hope that the treatments continue to work and we have a disease stable year.

wayne1965
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hiya all you lovley ladies

lollypop: I COULD NOT OF PUT IT BETTER MYSELF HERE HERE!!!!, and thankyou for saying what i was trying too get across but not too well it seems , ill have too learn too keep my mouth shut i think!!! lol
love huggs and wishes too you all.
wayner each day passed is one closer too a cure

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Just read an exert from a book that rang true to me: 'Be couraeoas, dare to fight, defy difficulties and advance wave upon wave. Then the whole world will belong to you. You must demand what is rightfully your!'

wayne1965
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hiya you lovely ladies
sarah YOU will regain your energy, yourself and other ladies have been a piller too loads of us, its probally me with my last rant put you all on a downer and i apologiseits just we have a lung drain booked for this thursday and you just think now and then if they went straight for the femara instead of the tamoxifen maryanne and a whole lot of others would not have this in the first place , so thats why i had a rant and i do apologise but if im honest just a little worried anyway all the best of luck in the world too you all,
love ,hugs and wishes .
wayner each day passed is one closer too a cure

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It's a hard time of year, and trying to stay upbeat is not happening for me at times. I don't know about you guys, but I decided to go Ostrich until next chemo. The Press are out to get me........ everywhere I look someone has passed from cancer,is in remission etc etc. I really wanted to forget about this stuff for a while! Its also naff that a lot of my friends are now starting the new term without me, again. Rats!!!!!!!! Moan moan moan moan moan, sorry everyone. I was very tired yesterday and couldn't go to hockey or the film i had booked for. Please someone tell me that I will regain some energy either on the weekly tax or after chemo.
Love to all, and sorry to be such a wet blanket
x sarah

wizardpoo
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hello all, I am new to posting here but have read many comments from you all, and greatly admire all with the courage,humour that is shown here.
I have a sort of question ,would welcome any thoughts. I had ILC with some DCIS in 1996.Radiation after lumpectomy and arimidex.Also was immediately put on biphoshantes alendronic acid cos was oesteopenia. After nearly 4 yrs on this dexa scan showed bone loss still happening. I have obviously my thoughts on what it could be, but onc says just go see oesteoporosis man,which I await. Has anyone else had the bone strenghtening stuff and it not worked..and what result many thanks.

myfanwy18
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Hello Wayne,

I have read some of your other posts on different threads and am very sorry you and your wife are going through such awful times. I can relate to you both having the "oh is incurable" in one breath and then "we can contain it in another". I have or have not, nobody seems certain as yet, bone mets. To sort it all out I'm having a PET scan in February - this has been going on since beginning of November. I'm on tamoxifen at present plus Zol acid for my bones once a month. To say its a bit of a challenge to remain positive and carry on is an understatement, uncertainty is the most difficult thing to cope with. I hope you find this thread as comforting and helpful as I have in the past, there are a lot of ladies on this site with very good advice.

Myfanwy x

wayne1965
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hiya all you lovley ladies
just had too skip threads, sorry for butting in BUT, its got too be said and ill try and keep the swearing too a complete minamum, maryannes doctor said the mets is not cureable and thats when you are trap in a bubble, THEN in her next breath she said wee can get it in remission, its much like someone with bad diebetees dont keep on top of it that could be bad!! ok so i took that on board anyway i found out through a chemist friend of mine they put 90% of breast camcer paitence on tamoxifen its about £1.90 per pack knowing it will only work in about 40-50% then if that dont work you get the femara about £90 per pack say no more!!!, WELL I WOULD SAY ITS A BIT LATE THEN WHAT A BUNCH OF T***ERS. so anyway i used too be live and let live but know more ive done more reading now than ever and if i think something can be done better ill will stand up and say and if i dont get the right things now WORLD WAR 111 WILL BREAK OUT!!! so all my friends make sure you stand up and be counted and dont take NO S**T you are all nice and good people and heros so dont be another profit margin too the sodding doctors because its all down too money and the jobsworth, sorry for the rant but they make me sick. sorry for taking over, love hugss and wishes too each and everyone of you,
wayner each day passed is one closer too a cure

scottishlass
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Happy New Year to you too Sue. I love that photo of you...it puts a smile on my face everyday. I haven't been over the door today but we are planning on going out for a walk once I have finished this cup of tea....now where will we go.....along a beach....up a small hill....or into town to see the sights....don't know but love the uncertainty! Hugs to you. I hope you are doing OK as I know you have been having it tough too. Love Val

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MOrning all

Just back from my 'romp' with the dog and putting my feet up for a while. Yes, Val you are an inspiration for us all.

Tina, I too have the aim of seeing my two off to Uni or well on their way whatever they choose. My daughter should be going THIS year, hard to believe where the last year has gone!

Keep the faith all and google nanotechnology, it might be the answer for some of us, it sounds promising.

Happy New Year

Sue x

scottishlass
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Dear MrsButler and SnowyOwl2, Thank you for your kind words. Pleased to help out if I can. My prognosis was poor and I was told that I had a 50% chance of surviving 2 years and that was in the year 2000. Treatments and medications have changed and improved a lot since I was first diagnosed with bone mets. I have mets in my sternum, spine, ribs and pelvis. But I feel much more comfortable now than I did when I first heard the devastating news. I did give up work early but this was so I could spend my limited time on earth with my husband and family....my husband wants a refund....only joking. I think you MUST listen to your body and rest when you need to. I take one day at a time. I still drive and enjoy the freedom that this brings to me. I do not miss my work one iota.....Here to help at any time you want to ask any questions or offload. Love Val

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scottishlass, you are an inspiration to us all.
I was diagnosed with bone mets a year ago and have spent the whole year on an emotional rollercoaster. being an active Guider I was determined not to let this get in the way of me enjoying the centenary celebrations - which it hasn't. I have been visiting universities with my middle daughter, and for a while was low because I thought I would not see my youngest daughter into uni but I have managed to hang on to the positive moments and have something to aim for. For you it is your first grandchild. for me it is to see all my children into uni - I will reassess once that has happened and find another aim. It is really hard when you are feeling low to find those things to aim for - post it notes are a great idea for putting positive thoughts on and then sticking them around the house.
Happy New Year to you all, Tina XX

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Dear Lollypop girl and Scottish lass

I totally understand where you're coming from Lollypop girl as I feel exactly the same. This is my third BC outing and now I have bone mets it has really screwed with my head. You look at the statistics and you just think that's it and then I read Scottish lass' comment and its truly inspiring. I'm 41 and have a 13 and 11 year old kids who I want to see grow up and hopefully have children of their own and the fact that you are still fighting 22 years later has cheered me up no end.

So thank you ladies xxx
Mrs B

scottishlass
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Dear Lollypop girl. Glad you are feeling stronger and may each day that passes in the year ahead be equally good for you. This will be year 22 from my original diagnosis and year 12 of bone mets....never thought for a minute I would be hobbeling along still. I was 39 when I was first diagnosed and am approaching my 61 birthday. My daughters are both grown women and am not going until I have a granchild in my arms.....well hope not that is! Love to all on this thread. You are a great bunch of lovely lasies. Val XX

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When I was originally diagnosed I was nightmare patient. I asked so many questions my Onc started avoiding me! Then with my secondary dx, I went into depression and just felt like It didn't matter anymore... I know, self pity is so unattractive. I even have stopped writing, which is e only thing that kept me sane previously. But then in the past couple of months I've decided I can't just sit and wait to die. It's not in my nature to quit -- I am a fighter! I oscillate frequently between 'I'm doomed and can't be bothered' and 'F@&k this disease -- it can't have me!'. Since reconnecting on here it's been easier to feel the latter. I'm very grateful for all the support. Much love, LLx

finty
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Sue - I couldn't agree more. I think for many of us being proactive in our treatment and asking awkward questions can make a measurable difference to our prognosis. The difficulty is for many of us it is important to do this right from the start, when it is most difficult to do so, and the shock is too great. And you are quite right, we can't expect our doctors to remember every tiny detail of our symptoms and treatment - I've also started keeping records - if I'd been paying the same attention from the start it would have saved me from some nasty complications.

I found out yesterday that the lady that does some ironing for us has just been diagnosed with bc. I asked her what the details were and she said she didn't know, and she had told her doctor she didn't want to know. And yet the bc could cost her her livelihood (she runs a cleaning business) if she is a lymphodema risk. Well, after two hours on the phone to her, now she does want to know! And I'll be going to her consultations with her to make sure that she is fully informed of her options. She'll be seeing my surgeon, but on the NHS (I see him privately), so it will be very interesting to see if there is any difference in the quality of care.

LL - good luck and please keep pushing to get the treatment you need.

finty xx

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Hi LL

I am so sorry to hear about the treatment you have had from your Onc. Yes, you must be demanding, and if you haven't got the energy then someone else needs to do it for you.

Two things I have leanrt in the 4 years I have been having treatment is to keep a record of your own of what happens and when; answers to your questions; what drugs etc and also to ask as many questions as you need to - unless you ask they won't tell you. THis all helps me to feel a little bit more in control of what is happening to me, yes, I am a little deluded probably. Treatable but not curable is what I was told too.

My Macmillan nurse has been very helpful with how to deal with the pain, with information about the drugs that are supplied to help, and about dosages too. I was one of those who never needed to take tablets for anything, so different from now. But he changed my attitude completely so that I take them to remain pain free and so that I can carry on with as much activity as possible.

I find the uncertainty of my health from day to day, week to week, month to month very difficult. I always liked to plan ahead to have things to look forward to and now it is not quite so easy to do that. But I still try. I am on my third lot of chemo now but between them I have felt well so it has been worthwhile. When you are feeling ill for prolonged periods it is much harder to remember what feeling well was like.

You will get plenty of support here, stick with it girl.

Sue x

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Hi LL
That's what I find so hard, the feeling of being left behind cos I can't do all the stuff I used to do. I am the organiser and so nothing gets organised. You are not alone, I reckon most of us struggle with this depression malarkey. My onc said I was treatable not curable and is doing his utmost to treat me. So in that respect I am very lucky. it is a rollercoaster ride and not being able to plan stuff cos you don't know how you will feel is a bummer to put it mildly.
Where in the country are you? I am in Coventry.
x sarah

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Thank you all. It's such relief to chat with people who really appreciate the frustrations, insecuties, pain and loss of identity we all seem forced through with secondary bc. I'll never forget the look my counsellor of all people shot me after she found out the news. She looked at me like I had grown another head over night. I was shocked that the one person I thought I could rely on to treat me like me still, was the one who put up the biggest wall.

I am also deeply saddened by just how many of us have been left to carry on in pain even when the writing is on the wall. I feel and felt like as soon as I was 'incurable' in their eyes they passed me on to the next dept. Even theMacMillan nurse at the Nuffield hospital kept trying to refer me to the hospice even though I had just finished chemonand was in remission. I just wanted to talk to somebody in the environment that I had always known and felt safe in, but any time I brought up my emotions I got the hospice card played on me. After the fourth attempt to fob me off, I accepted defeat and the referral. Thank goodness I did! The hospice doctor saw me and said straight away she felt I should change Oncs and even arranged it for me. I wonder if any of these Oncs would allow their partners to suffer so long in pain before doing something about it.

Anyway, my life has become one huge cancer yo-yo. I never know from day to day if I'll have an up or down day. I'm used to being so active, and I find it extremely frustrating to not be able to do things like I used to.n When I do push myself -- the next day is blown out of the water and nothing gets done cause of pain and fatigue. My family moves on without me, and that hurts -- but I can't blame them. I get so depressed and struggle to scrape up motivation or meaning to push on. To make matters worse, I recently lost my best friend to breast cancer.

Today has fortunately been an up day. now I must moderate myself so that I can have more tomorrow. I feel like an 80 year old. GRRRRRR....

Night sisters (and any bros!). LLx

finty
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Hi Lollypop Girl

The issue with zometa is that it can cause bone necrosis in the jaw, some info here:

http://annonc.oxfordjournals.org/content/16/7/1207.full

My understanding is that it is a risk with all the bc bone drugs, but because zometa is a stronger infusion, the risk is greater. It is quite rare, but as bisphosphonates are relatively new drugs, and this is a side effect of long term use, incidents are rising. So good dental care is essential.

I am really sorry you have had to join us, and I think you have been treated appallingly by your onc. I don't understand why your new onc won't give you chemo now - it sounds as though hormone treatment has had little or no benefit for you, and seems bizarre to try another round. You sounds as though you are at your wits end, but if you can summon up the strength to do it I think I would go back and demand chemo now.

finty xx

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I have bone mets in my C4, 5 and 6 and I have pain down my right arm, I was fortunate that my GP requested a neck scan at the same time as a shoulder scan as that picked it up. I know that we all live on an emotional roller coaster and I am not a person that gets cross very easily but when we have had breast cancer and probably all had a bunch of dud lymph nodes when we had our initial surgery, and the skeleton is one of the most common sites for the dud cells to migrate to as they find a hiding place to avoid the chemo why is it that a lot of us go through months of discomfort before the specialists join the dots together. I queried this with one of the oncologists and all she could say was that the doctors focus on their area of speciality and may not always think about other causes - hence the tennis elbow diagnosis, or my nerve conduction tests. I think that is why this forum is so good because it gives us some examples to take to our meet ups with the various specialists. I am sorry that I did not join after my primary diagnosis as I would have been better informed about the choices available to me. still glad to be here now.
Happy New Year everyone
Tina

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dear LL
I was dx with bone mets same time as primary dx in May 1010. A lot of ladies on this thread know my story. I have just had FEC 6 and am about to go on weekly doxetaxil and herceptin. I have zometa every 3 weeks. I was tried on hormone therapy but wasn't successful so onc is giving it both barrels. I think his intention is to stop spread if he can. In his word, he is not going the palliative route but aiming to shrink the primary tumour and then possibly mx, then zometa and herceptin as long as it works. Also he is thinking about putting me on another hormone extamence( possibly not spelt this right....). There was some confusion about my menopausal status, but me and onc agree that after all my poisoning sessions its quite likely that I am pretty switched off now. in more ways than one lol.
My mets are spots on ribs on both sides, and one on collar bone developed whilst on hormones.Oncs favourite trick is to poke me hard and ask if it hurts, fortunately it doesnt. Don't put up with pain ask for meds. have you tried macmillans? They are diamond and can give you laods of advice.Happy to report that chemo has worked so far, my primary tumour was huge and now isnt quite so huge. TMs were over 1000 and now on last bloods down to 204. Insist on radical treatment if you can. My onc wanted to see if Femara would work to spare me chemo I think but didnt hang about when he realised things were not going to plan.
Hang on in there honey, they have a huge bag of tricks to give you. Oh and on a practical note, have you got DLA? You are entitled and it isnt means tested. Ask the Macmillan nurse to fill in the form though as it is very jargonistic. All I had to do was to tell her my NI number and sign. I got mine through in under 2 weeks. Then cos I had that I could apply for a blue badge which has been a godsend when I have felt a little weary from chemo. Also got a disabled persons railcard so I am good to go!!!!!!!!! I did feel a bit funny about being classed as disabled but once you can get over that it's fine if you know what I mean.
x sarah

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Dear LL,

I am so sorry and shocked to read your story. Thank goodness you have changed oncs. They have to give the hormone treatment a good couple of months to see if its working - its good that is not in major organs so try and take some hope and comfort from that. Many ladies on here, with treatment, overcome the same diagnosis as you - from what I am aware of you DO NOT have to wait for spread to your organs before you have more chemo - with me, I have recently been diagnosed with a tumor on L5 and some active cells in the lymph gland above my lung, but thankfully its nowhere else. I am now on Arimidex and will be checked in 3 months. If the hormone treatment has not worked, chemo has been mentioned as an option. Dont give up, keep fighting your corner - as regards pain - go back to your GP and tell them you are in pain - I did and all my meds were changed and I am now much more comfortable on a day to day basis. Please keep posting and let us know how you get on - dont suffer in silence - also try and take someone with you as back up - I sometimes write things down as they are telling me things cos it can be so daunting. Take care xx Debbie xx

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Can somebody please explain the issue with jaw pain and zometa? I've been having zometa every three weeks recently and have had a lot of jaw pain. I didn't realise this could be down to zometa. LLx

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hi Claire66'

I have mets in my neck which causes pain in my right elbow (Old onc told me it was tennis elbow!), and a burning sensation down my left arm. Had rads to my C5, 6 and 7 vertebrae in my neck which hasn't seemed to help. Onc is putting me on an epileptic drug to ease nerve pain. let me know how it goes with you. LLx

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Hi ladies,

I've posted on here before but under a different user name. It's been so long since I logged in I forgot my username and password! I was diagnosed with bone mets in Oct last year and had chemotherapy. The results were good but a couple of months later I complained to my Onc I had pain in my shoulder. So, what did he do? He scanned my chest and said the areas we already knew about were stable... I went a couple of more months and complained again about the pain in my shoulder and the new pain in my neck. Again, he scanned the previous areas and said they were fine. I kept asking if that meant it wasn't spreading elsewhere, and was told that logic dictated that... A few months later I changed Oncs because I was sure something was wrong and was getting nowheree with this jerk. Guess what? My new onc immediately asked when my last bone scan was, and was horrified to learn it was nearly two years ago! The bone scan showed spread to my shoulder, my C5,6 and 7 vertebrae in my neck, my skull, L1 and 5 and both hips. Now it has speed to my lymph nodes all around my neck and near my sternum. I'm freaking out because even though my onc put me on last line hormone treatment (faslodex injections) and has increased my zometa to every three weeks, the cancer still seems to be thriving. My onc said she didn't want to put me on chemotherapy again until it has spread to my major organs, which I don't understand. She can see it's proliferating, and I'm tired of all the pain. My head aches, my shoulder and arm burn and I just feel generally awful. Surely having it spreading throughout my lymphatic system can't be good. Dawn, I was encouraged by your story as you seem to have had extensive spread from the beginning and have fought it off. how have you managed psychologically to handle all the pain and uncertainty for so long? I feel like I'm going crazy. I feel like I'm just waiting to die, and how can I function with no hope? Sometimes I think dying would be so much easier, but I'm only 40 and have four young sons to think about. Am I the only person who questions whether all this pain is worth it? Am I being ungrateful? I just feel so lost and lonely. LLx

myfanwy18
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Re: Bone mets - please join in

Hello everyone, I hope you have all had the best Christmas possible and been able to relax and enjoy the snow melting!!

Hello Snowyowl2, just to say I have found this thread extremely helpful over the past few weeks with some very comforting advice given. I was diagnosed with BC and within a month or two diagnosed with bone mets. Well this is what I thought (and is probably the case, I'm a realist) - Oncologist said CT confirmed it, GP said bone scan was inconclusive, Macmillan Physchologist queried it, now original consultant (I had no knowledge of this) has arranged for me to have a PET scan in February as, informed just before Christmas by the BC nurse "did I know my bone scan was inconclusive and they want to find out what the calcium deposits are on/in my bones?". I dunno, up and down, sometimes its easier to just shut off and as I'm feeling ok, I just try and enjoy my day. I had a breast removed and nodes, 20 out of 21 dud and a course of radiotheraphy and am now on tamoxifen, as like you my cancer was "very" hormone receptive and zol acid, which really didn't agree with me, took a couple of weeks for the aches and pains to go - or may be I'm just getting a tad
old! However I don't plan on letting any of this put a crimp on my new year celebrations, plan on a curry with friends early then a lock in at a friends wine bar later - then perhaps go racing on New Years Day.

Helen, lovely to see you posting - hope you had a lovely Christmas, I did send you a message before Christmas but know you have been busy with the family. Looking forward to hearing all about your Christmas.

Val and Dawn, hope you both had a lovely Christmas, Val is the snow melting where you are? It is where I live and I have to say I'm pretty pleased about it! Dawn, did your grandchild enjoy their (first?) Christmas. Again I'm looking forward to hearing about your Christmases.

Love to all who post on this site and who have given me such good advice over the last few months - you have dragged me out of some very dark places.

Myfanwy

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Re: Bone mets - please join in

Hi Snowy Owl,
I've sent you a private message.
Helen W

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Re: Bone mets - please join in

it is really great to know that there are some really supportive women out there who are able to talk about all the niggles we all experience at one time or another. Thank you for replying and I have already found someone who lives fairly close to me and there are more I have been told.
look forward to meeting some of you soon

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Re: Bone mets - please join in

Hi snowy owl,

Welcome to the forum and thread but I'm sorry that you found yourself here.

I was planning to go to the event in Nov, too. Booked it but then later found out that it clashed with my onc appt and rads, so had to cancel 😞 Otherwise, would have met you there.

I live in Bristol and I saw that you've found the Bristol and Somerset metup thread, so hope you can meet them. I don't go to the one in Taunton (can't drive), but some Taunton ladies have come up to Bristol before and all of them are lovely. So, you're def not alone!

I'm lucky in that my bone mets in spine didn't cause me any pain. It was dx'ed together with primary. I have zometa monthly infusion, Zoladex and arimidex for hormone (Tamoxifen didn't work for me).

Hi Anne Marie, I'm sorry about your latest development, can't add anything to the other comments. I can only relate too well to that "denial". Keep eating, we need all the nutrition we can get:-)

Anyway, hope next year will be a better year for all of us.

Take care xxx

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Re: Bone mets - please join in

Hi I have just joined the forum following on from an excellent day organised byBreastcancer care in Bristol back in November. I don't think I was in denial, it just tookme a little longer to want to make connections to others having similar experiences to me.
my primary diagnosis was back in Jan 2005 and I seemed to bounce back from the surgery/chemo and radiotherapy really well. Life went on and then in March 2009 I began to notice a tingling in my armpit on the mastectomy side. I had my routine oncology appointment, wastold it was probably scar tissue and thatshould it get painful then to go to my GP. By June it was painful and I was put on co-codomal and diclofenac for the pain, and amitriptyline to help me sleep, and referred for nerve conduction tests (nerves were fine)in August, then shoulder specialist (October) who said my arm was weak and referred me to physiotherapy (December)and for a routine MRI scan on my shoulder (November) my GP,who was keeping an eye on me asked for my neck to be MRI scanned at the same time, which it was. I was seen by the shoulder specialist in December who reported that my shoulder was fine but that he was referring me to the spinal specialist because there were some anomalies showing in my neck. I don't know how or why but at that point I was certain the cancer had returned, or resurfaced, but as I was on my own did not want to press for more information. the following week (23rd december 2009) my husband accompanied me to see the spinal specialist. I had gone through a lot of the emotions in the week leading up to this appointment but my husband was then in denial - might be anything, osteoporosis, arthritis, anything. the spinal specialist was lovely, he explained I had breast metatseses on my C4, C5 and C6 vertebrae and that the tumour was pinching my nerve - hence all the pain. I was put on morphine, gabapentin and my dose of amitriptyline was upped. I was taken off co-codamol. the following few weeks were a blur, loads of scans, lots of different doctors and it was really quite scary because I didn't know what was happening. I finally got back in to oncology - having missed my 5 year mark by just one month - and was told that I had caught the tumour very early on - good - it is only ion the 3 vertebrae and because my primary had been so hormone sensitive they were certain that hormone therapy would work. a year down the line I feel very calm and relaxed about things. I am on pamidronate monthly infusions, and arimidex for hormone therapy - following the removal of my ovaries in day surgery as I reacted badly to the zoladex implants - and my tumour marker is down to normal levels. I am still on painkillers - its not giving up the nerve easily - but I have almost managed to come off morphine and am much more awake!! I have carried on working as a family support worker for Barnardos throughout, and I am also a Brownie Guider and my Guiding and Scouting family have been so supportive. I cannot drive (my decision but you should see my reaction times!) so they give me lifts and for work I have access to work funding and job centre plus pay my taxi fares for home visits. I would really like to get to know more people having the same, or similar treatments to me as I have not found anyone in Taunton. if anyone reading this is from Taunton would you like to form a support group here in Somerset for women with bone mets, or if there is an existing group (don't think there is because our breast care nurses are really on the ball and have not told me of a group) could I join you. thanks for reading everyone, lets hope 2011 will be a great year for us and I look forward to joining you all in the forum

sweetanimo
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Re: Bone mets - please join in

Thank you ladies for all your messages of support and for making my Christmas a lot more bearable.

Saffronseed, it would be good to compare notes. I'll let you know how Wed. goes.
Scottishlass, thank you for all the Zometa tips and the offer of help and advice.
Thank you too Nicky and Lizcat for your uplifting posts - these really do make a difference!
Debonair, please let me know how you get on and love to you too x

I feel such a fraud as I don't have any pain and am eating like a horse to the extent that I have actually gone up another dress size. I think it's a bit of 'comfort' eating (and drinking!).

Love to you all,
Anne Marie
xxxxx

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Re: Bone mets - please join in

Good evening everyone, I am a little late but I want to wish everyone a very merry christmas on this site who have been absolutely brilliant on giving advice and encouragement since my bone mets diagnosis in June.

Lets hope we all have a good New Year and some good things to come then too.

love Ann B xxx

belinda
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Re: Bone mets - please join in

Happy Christmas All and to those newly diagnosed very best wishes. I just wanted to say this rotten diagnosis can take a while to get your head round. Be kind to yourselves.
Christmas day 2003 I was in hospital recovering from my hip replacement and trying to get my head around the breast cancer and bone mets diagnosis I'd been given 5 days earlier..the hip had fractured due to mets. I was in a lot of pain for the 5 days before my op, was on high doses of morphine and totally immobile..in fact because of this I then developed a blood clot to the lung..it never rains etc etc! I remember telling my husband I wanted to die at home..I wasn't thinking straight as the NHS would surely not have given me a hip replacement if I was about to die.
2010..and I'm still here, pain free and I'm now going to have a blooming lovely Christmas. Next year I will be doing it all again..hope springs eternal.
Take Care..xxxx

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Re: Bone mets - please join in

Hi all

I am off to leave a little glass of something out for santa 🙂 May well pour one for myself too! If i do i will raise a toast: here's to you all - the amazing members of the club no-one wanted to join!Sending happy thoughts and christmas wishes your way.

DGW
x

scottishlass
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Re: Bone mets - please join in

Have you even thought of changing to another Doctor at the same hospital? Perhaps it is just that one Oncologist who isn't suitable to you. I have requested to see another dostor, a long time ago, but if you have faith in the specialist doctor it can make all the difference.
I phoned to arrange a flu jag today, for next week. They asked me if I could go later that afternoon. 5 minutes later the nurse phoned me to ask if I could pop up now as he was free. So got my flu jag. While I was waiting in the empty waiting room, my own GP who I can never get an appointment with, passed by and said hello. On his way past me I just said " Oh I keep meaning to make an appointment with you.". He said " I am duty doctor today. Once you have seen the nurse, ask reception to call me, and I will see you then". 5 minutes later I had a 10 minute chat with my GP. NOW.... what are the chances of being successful in seeing the nurse and your own GP all within an hour of phoning!......sometimes things just amaze me.....Have a great Christmas all. XXX

saffronseed
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Re: Bone mets - please join in

Hi Val, Yes that dark place I know it very well - every corner, every nook and cranny!

I am still reeling from my insensative and inept(in my view) oncologist and his doom and gloom attitude towards me and the comments he made saying I had already had the strongest Chemo and there was no more chemo to be had.

You ladies on this site and particularly on this thread gave me the hope that my Onc had taken from me. You also gave me the strength to question what he was saying, seek more informed information, arrange a second opinion and to change to another hospital and another oncologist

No one wants a secondary diagnosis, but even worse no one wants a medic who is so far up his own *rse that they can't see the impact their behaviour, words and actions have on the people they are supposed to be caring for.

I am now in a much better place, its still a bit dark but I have lighted a few candles and I can see far more clearly. I have arragned a second opinion in the new year and will be transferring hospitals and oncolgist.

I know it won't be easy and this disease will probably 'beat' me in the end but I still have a passion and zest for life and I am going to do everything I can to stay fit and healthy for as long as I can and live every day to the fullest.

The support of you ladies is second to none and I thank you all so very much. Have a good Christmas x

scottishlass
Member

Re: Bone mets - please join in

Dear Saffronseed, When you posted last time you were in a dark place. You sound a bit stronger in todays post. We have all been in that dark place but we are here to support anyone who wants to join us and share our experiences etc. I sincerly hope that you enjoy Christmas and have MANY many more to celebrate too. It can be a scary place to be at times but there are many of us who have loved with bone mets for years. I didn't hink I would still be here but I am and am still enjoying life. I hope that you will get to that place too before too long. Hugs and stuff, Val

saffronseed
Member

Re: Bone mets - please join in

Dear sweetanimo

Sorry to hear your results - I know how devestating it is to get a secondary diagnosis when in your heart you are wishing it is 'only' arthritis.

Your team seem to be looking after you and I am impressed how quickly they have you started on your treatement. I was told this Tuesday that I have bone mets on T11/12 yet told 'just to carry on with my Arimidrex'.

No time is good to get this news but just before xmas seems to add to its cruelty. Perhaps we can keep in touch and compare notes as to how we progress. I have taken a lot of inspriration from the girls/ladies on this thread and for me it will be a lifeline.

Take Care xx