Bone mets - please join in

[Mildred1602]

What a busy thread - 42 new posts since I last dipped in.
Keep attacking ladies!!
Ingrid

[lizcat]

Evening all,

Hope you haven't had the horrible wet weather we've had here today. Started promisingly but then deteriorated rapidly. Oh well.....

Had an email from onc's secretary today with bone scan results. As I don't have a clinic appt til Feb 21 after CT scan, I'd asked for bone results once they were available. B@llocks - it said there is an increase in both the number and intensity of dodgy (my word) areas in my spine and right hip when compared to the scan last Aug. Onc hasn't asked to see me any sooner and I have my zometa this week on the same day as onc does her clinic so assume things are not too drastic at the mo. At least it shows I was right to ask for scans and about having a treatment review based on scan results when I was having my last zometa. The lesions are osteoblastic (growing) ones which apparently are not as common as the other destroying ones. Anyone else who knows what type theirs are and can tell me what their treatment has been??

Thanks a lot girls, Liz xx

[myfanwy18]

Hi boney ladies,
I've been reading your posts, much love to you all. All quiet on the western front here!
Katie, hope all goes well when you see your ONC on your own. Big hugs.
Claire xx

[Katie2002]

Hi there everyone,
Just wanted to say thank you for your support and advice. Not due at unit till 3pm. I have written my questions down - all I need now is a shot of confidence!
Sue - I am at Bolton but also under the Christie if that makes sense? As for my daughter - she is brilliant and just accepts me for who I am and what I can do! Her school have been fab with her - I know she is able to talk about things on her mind. I know she is going though it at the mo as my best friend , her Godmother, has recently started chemo for ovarian cancer. The sad thing is she was helping me to put some stuff together for my friend( head scarves, wig brush, shampoo - the usual chemo kit) - when she turned and asked if we would be getting the stuff back. When I asked her why, she said for when she needs it! I had to bite back the tears and tell her that she would never need them or 'magic medicine' as we call it. What on earth do you say? I hate this disease for how it has impacted on her!
Rocketqueen - I am on herceptin - the way I understand it I don't think it needs to be as regimented as chemo. My nurse explained that for example if I booked a holiday they would just work round it. I do think its terrible that your poor mum didn't get it though. I would phone your mum's BCN and see what she says.
Love to all xxx

[Guest user]

Hi ladies

sorry to hear about work problems and your pains. You are all an inspiration to myself. I wish my mum would follow this thread!
i would like some opinions on the subject of my mums treatment. She has herceptin and zometa 3 weekly and before Christmas on her treatment day she wasn't given any herceptin by mistake. She was unaware, had the zometa, came home and at onc appointment he asked her why it wasn't given. I am astonished. We are seeing onc Tom and I will be asking questions but I am puzzled and worried as she missed one herceptin and wasn't given the reloading dose before her next treatment! I assume it is useless without the reloading dose. Anyone have any experience or opinions on this? I don't know how concerned I should be and whether it deserves a complaint.
thanks in advance ladies and keep fighting. X

[Guest user]

Hi All. Very busy thread this! Nice in one way but not so in others if you're with me!
Elginquine - you sound so much more 'up' it's a pleasure to see!
Katie & Karen - he may be 'priming' you with Zometa IV before moving you top bisphonates (thats not right but near enuf - pills!). Some hospitals - Aberdeen and Edinburgh - seem to have people initially on pills rather than IV - so suspect it comes down to individual onc opinion. And Karen - don't think you'll be left on your tod after Zometa and 1st year of HER - there's hormones if you're positive for them and 2 tablet chemos next in line for you - have a look at eth Xeloda / CApecitebine thread Hot tips thread and you'll see there's lots of boney people there!
Sue & Katie - my heart goes out to you - I don't have children but I can imagine not being able to do something so basic as pick your child up must be devastating with everything else you're putting up with.
Mel - I'm told I have to submit to bone and CT scan after anothe r3 cycles of Cap for same reasons - CT scan shows up more detail apparently. My vein is going to love that! I'll have to speajk nicely to her beforehand and hope she coopoerates - the CT scan has to be arm aqpparently cos the fluid goes in at a higher pressure or something and feet aren't so able to take it - joy!
Lots of other posts I know but I'm tired, have stinking cold thanks to OH and am desp[erate to have it unde rcontrol for Thursday cos I don't want to delay next Cap cycle, so off to bed.
Night all
Nina

[Guest user]

Katie & Karen, are you in East Anglia? My usual onc is not much of a people person either and has the amazing haabit of waving me infront of him towards the consulting room. Perfect gent, but i never know which room we are heading towards, which makes it so awkward. Last appt I saw a lady instead and she was alot more talkative, although was less familiar with my history.
Katie, just try to take things at your own pace, Since my back surgery, if I walk any distance (so more than around the house really) I need crutches and have to drive to school if I am going to manage to stand around in the playground. The thought of going sledging is so far from my capabilities - I did manage to walk to the end of the drive to watch Amy fail to slide down our road. How does your lo cope with you being less able? Amy does really well and she mostly doesn't complain when I ask her to pick up things I have dropped (as I can't bend to get them) or get a cereal bowl at the cupboard.
Sue

[karen12]

Hi Ladies,
Katie I'm only having 6 zometa too - I know we have the same onc. I will be interested to her the reply you get. I think your questions are fine and he will answer if you ask direct questions he just doesn't seem to volunteer info does he. Hope you get on ok on your own - are you just going to the local hospital?
Hope evryone else is doing ok
Karen x

[karen12]

Oops - sorry for spelling mistakes my hands and brain are not co-ordinated today
:o)

[lizcat]

Katie - all those questions sound very reasonable to me. Take a list. I don't blame you for going on your own, I always try to do the same. But that's me - I feel like I can't ask more serious (?) questions if Paul comes or if Mum were to come. Dad would never come so that's one less to make an excuse to!! He can't cope with anything hospital/illness with family or anyone. I've even told Mum that P is coming with me when's he's not so that I get there on my own. Or say to him that I'm seeing them in clinic after bloods and zometa and we know how many hours that takes!!! Usually works. Think the 7 hour wait I had for my nerve block might have put him off for now.....

Must go now - off to watch Mr Selfridge and record Ripper Street. Bit of a contrast in viewing there....

Love to all xxx

[Buffy3]

Hi Sue, my heart went out to you when I read your message..lots of huggles and giggles in bed.
Katie, my onc was saying about the alternatives to Zometa that are available...so that may be the reason you are only down for 6. Having said that I have had more than 6 so far every 3/4 weeks since July! Am herceptin - so cant comment. She sugested I would possibly go onto letrazole as maintenance. Also booked in for for two scans ct and ultra, she said a the ct scan showed up more than the bone scan! I always write down a huge list of questions, however I rarely see the same onc/ registrar. It does mean you can ask the same questions. I felt comfortable with the onc this time and she went through lots of things with me. Feel free to pm/ email if you need to..I am home.
As for birthday on tues I will hit that lack of steroid feeling. Stupid things kept me awake all night. Virtual birthday cake after chemo...birthday postponed for a while.
Just watching dancing on ice...my hubby hates it...have taken over the sofa tonight.
love to all
Mel

[Katie2002]

Sue - I so know where you are coming from. I too have a six year old. There's no way I can lift her. It's hard to carry on as ' normal as if everything is ok but it is just adapting and finding other things to do. On the other hand it helps my state of denial. I hated the fact that yesterday I just didn't have the energy to take her sledging. I tried to walk with her to dance lessons in the morning but had to give up as I found it so hard in the snow. My hubby carried on with heR so she didn't miss out. I like to think I'm not easily defeated. Anyway I'm glad the snow has been washed away. It's looking like a very wet week ahead according to country file.
Mel - have you any plans for Tuesday? Are we meeting up in cyber space for cyber cake!!!!! I do so love cake!! I am still loving being back at work.
hello to elginquine and porkie - sorry you've had to join us but as you are realising we are a supportive bunch x
i am trying to gear myself up to seeing onc to morrow. It's zometa day as well as my herceptin shot. I have so many questions to ask him but feel like I have to psyhc myself up. I also feel scared of what he'll say. He is not exactly a people person.
i need to ask why I am only down for 6 zometas? If he's only going to give me a years supply of herceptin does that mean I'll be left without any medication until it gets worse and spreads even more? Basically is he writing me off as that is how it feels? Does the pain in my knee mean my bone mets have Spread? Is it normal for the area under my mx site to look a bit larger compared to the other boob side?
Do these questions sound reasonable? I've not told any of my family I'm seeing onc so it's the first time by myself. It just upsets them too much and that in turn upsets me if that makes sense. Just hoping I am strong enough to ask and not Chicken out. God I sound pathetic, sorry x

[Guest user]

Hello ladies
I have been struggling recently with a vey simple thing that I just can't do (and probably never will again). This is picking up my daughter. She is 6, so doesn't need carrying places. but loves being picked up, tickled while up in the air, turned upside down etc. Over Christmas, my step children (in their 20's) would both do "crazy huggles", then my sister visited and of course picked up her little niece (as her children are also in their 20's so she doesn't get to throw them about so often) and of course my husband does too. Every time I would love to hear her laughs, but be upset that I couldn't do the same - a snuggly cuddle on the sofa is just not the same. The thing is, I can't really tell anyone how it makes me feel - I don't want Amy to miss out on this type of cuddle and I don't want the other adults in her life to feel bad that I can't join in.
Well, this morning Amy climbed into bed with me and after chatting for a bit, she asked me to tickle her. So I got the lovely childish giggles all to myself. I must make sure she climbs in with me more often.
Just thought I would share.
Sue

[Buffy3]

He Elginquine, I am hoping I shall be able to carry on with my job but I am also very aware I may not be able to in the same capacity. I would not carry on if it was to the detriment of the school. I just hope I will be able to...I guess that is the stubborn side of me. The other side of me would love to retire..just feel too young at mo.xx

[lizcat]

Got your message elginquine and replied. Private message to karen12 with info.

[Guest user]

Hi Lizcat, I am not picking it up in my messages, can you try again and send to Karen as well.
Its turned out lovely so off for a walk.

[karen12]

Can someone also let me have facebook details please
Thanks
Karen xx

[lizcat]

elginquine - have messaged you about fb

[Guest user]

Thanks Buffy3 for your comments of HR, the last time I was off long time sick they sent me paperwork for early retirment but I had already looked into it. On the surface they are supportive but I can understand it as I am costing them money ect. as we all know having cancer is expensive as we all ned extra things to support our everyday life. I have found comfort in hearing your stories and now think I need to readjust and plan a different was of life rather than hanging on to all the things I will not be able to do.
lucinda also thanks for sharing your story and your right every week cancer research break through with new way to treat.
I was trying to get into secondaries ladies on FB but could not find the page? can anyone direct me to it?
I have had a major chest infection since new year and this is the first weekend I have been out & about enjoying company of friends. Played the wii last night with grand daughter and laughed, flet good.
Hope you all well
X

[Buffy3]

Elgiquine, I was diagnosed July 2012 with secondary and primaries at the same time. The support from the ladies hear has helped me immensely. I have had some down dark days but have been lifted by positive replies here. I have not been able to work since July...I was in alot of pain initially withmy hip and had rads which eased the pain and this has healed quite well although does ache and I have a slight limp. I am a deputy teacher and was hoping to return after October half term...unfortunatly my initial hormone treatments..tamoxifen and zoladex were ineffective I had a feeling this was the case as I was getting more and more tired. To cut a long story short I have been advised not to work through chemo..am too tired and also the germs are rife with the children. I hope to return at some stage...the doc seemed to think I should be able to. Am on half pay at mo but fortunately my critical insurance paid so we are ok financially for a while ( havent paid the mortgage off yet though) HR were not helpful, saying inappropriate things about early retirement and dismissal, I have contacted my union about this who was appalled. I think I want to be phased back in to see what I can realistically manage. So my advice would be watch HR and see how you are and what you can physically do. I am only 42 (on Tues) and need to normalise my life again. The last 6 months has been Bc and hospital appointments.
Take care Mel x

[Buffy3]

Good evening lovely ladies, sorry to hear many of you are having pain and se. I have just had chemo 5 and am just feeling slight nausea, far better than round 4. Prob shouldnt speak too soon! Had another different doc this time who talked through my possible maintenance treatments, most likely option (if she was to treat me) will be letrazole. She took time to show me my scans as I was shown them briefly while being told I needed chemo. I want them to check out the mets that are in my neck...hopefully they will not be giving me any trouble but best to clarify the situation I think. Its so good to only have one to go although the doc mentioned I will need tax at some stage!!! Lets hope that is a long way away. The doc I saw mentioned alternatives to zometa too...cant remember exactly the names but I heard them mentioned here.

Jacqui sorry to hear your sad news...keep strong and remember the good times.

Take care everyone..sending virtual hugs Mel x

[lucinda]

Elginquine you had had lots of advice from the other boney ladies but thought I would tell you about my treatment.I have exstensive bone mets several in spine,ribs,both hips pevis and femur(dx with secondaries from day 1 in may 2009).To be honest the most pain I am having is in my right hip and it is being caused by arthritis.My last scan showed further progression of the bone mets but also low grade legions in my liver.I tried arimadex but tat failed,did well on letrozole for 2 years but that has now stopped working.I am taking a combo of exstemane and everolimus.Exestemane is a hormone and everolimus is added as it works in a different way to the hormone therapy,but helps the hormone therapy to work.It is not available through Nice and I had to get funding for it.Have only been on it for 2 weeks so can't comment on how it is working yet.I ahve to have blood test every 4 weeks before I get my script for the next 4 weeks and can only get it form the hospital.It is available to people who have been on a hormone that has failed,and they can apparently retry treatments that have previously failed.Down side 2 drugs...2 lots of se's.Upside the trials on it have finished early because the results have been so promising.What I am trying to say is do not despair more treatments are becoming available.
So sorry so many of you suffering pain at the moment and hope treatments are soon under way.I am really having problems walking at the moment but I know it is not bc related so think I may need to go down gp route.I have been told I can have rads to left hip but that is not really unbearable onc pain meds kick in,so will leave that in reserve.

Big hugs to all

L xx

[Guest user]

Hi ladies, hope you don't mined me joining in, I have just been diagnosed with bone mets after almost 4 years since first diagnosis. last week I had one big dose of radiotherapy and yesterday started on capecitebine, just waiting for side effects to kick in. I don't have anything to add or ask as all of my questions have been answered during the many hours I have spent here recently. Just wanted to thank everyone for their helpful comments as they have definitely helped make what has been an incredibly upsetting and scary time a lot easier. thanks again ladies.

[scottishlass]

Hello to all the new ladies who have posted and to all the old ladies who I have known for years too!
I was first diagnosed with BC in 1989 when i was 39. I had chemo, mastectomy with reconstruction and got back to work later that year. I 1999 when I was 49 I found that my BC had spread to my bones and was in my spine ribs thorax and the worst area was the pelvis. I am 62, soon to be 63 so have been dealing with this disease for 24 years in total and 14 years with bone mets. I have also needed surgery for a hip replacement but that is settling down nicely although it has been a long journey to get to this point.
I am back on chemo again just now and am waiting to have some radiotherapy and am going to see the Pain Management team next week and the dental hospital! So full diary but mainy to do with hosptial appointments! But I am going to a Ruby wedding Anniversary celebration tomorrow for friend's whose wedding I attended all those years ago when life was rosy and we had no BC to worry about.
Desspite all that I still enjoy life. I has just gone a bit askew recently but my main problem is the tiredness I am experiencing with the weekly Taxol infusions. I have increased my MST ( slow release Morphine) now that I know that my arm pain is to do with my bone mets and it seems to be helping greatly.A noew bone scan revealed that the pain in my arm is BC related. Nothing worse than ongoing pain. Now that I have the pain being controlled with the correct painkiller it makes things much better.
I get Zolidronate infusion for bone mets every four weeks now. If you ever need dental extractions it is vital to ask your dentist to consult your Consutant Oncologist BEFORE any work is undertaken if you have been on any form of Biphosphonates nomatter how often you have this treatment.
If you want to ask any questions about treatments etc please feel free to ask us. One of us is bound to have come across it! Hugs to all boney people, from Val

[karen12]

Hi Everyone
The snow is falling again - hasn't stopped since late afternoon. Glad I got picked up and taken out for coffee before it started.
Sorry to read that so many of you are having problems with pain, work etc. Sending hugs and positivity to you all (is that even a real word??).
Can anyone tell me what the facebook group is listed under please.
Stay warm and safe
Karen xx

[Guest user]

Hi ladies
I am so pleased I posted my despair and now feeling calmer on hearing you response and experiences. Thanks broomsticklady its great to hear something positive within all the turmoil. I see Dr S in Dr Gray’s , still trying to build up trust after an incident last year with another consultant, I think that they don’t give you a wider picture as they don’t want you panicking & you explained it in a way that makes sense and offers me reassurance. Thank you for the link and the FB page.
Dawnhc – since 1990 gives me lots of hope and leaves me thinking why did anyone not tell me, it has now become clear and instead of saying “ no I am not doing chemo again” I am now thinking ok I will go with the flow and see what happens.
Lizcat it is also good to hear that there is an alternative to Zometa, that has never been mentioned to me so I take note of it & raise it next time I am in clinic.
Many many thanks ladies. I will try to keep in touch, I sometimes get overwhelmed and find it difficult to post. I can’t thank you enough.

[dawnhc]

Elginquine my heart goes out to you as I read your post. Well done you for being able to put it all down. I hope having made a start you will feel able to join in more now. My situation is different to yours because my bc is hormone negative and whilst I had primaries I went through many different chemos and two more once bone mets was diagnosed in 2002. Nothing seemed to stop the progress of this wretched disease until in 2004 they went back and checked tissue from my last mastectomy and found I was her2 +++ and I went onto Herceptin. That amazing drug stopped my cancer in its tracks. I dread being told one day that it isn't working but I think there are quite a few drugs around now for those of us that are her2 positive when herceptin stops working. I too would dread being told I had to go back on chemo. You say you have had two different types but there are many more chemos. Which ones were you on? I know many of the girls! on here are on capecitabine and they seem to tolerate it very well and can stay on it at a maintenance dose for a long time with hardly any side effects. I was also surprised that you say you are on zometa bi-monthly (am assuming that means once every 2 mths - but I always get confused at this LOL). I am treated at the Royal Marsden and they give zometa either 3-weekly or monthly for bone-mets. There is a newer drug in use now for bone mets and that is denosumab. You could ask your oncologist about that too.

Have you got spread to many of your bones? Mine was very extensive right from the start - in my skull, collarbone, ribs, pelvis, one hip and top of femur, then a few months later spread a bit more in my pelvis and to the other hip. But for about the first 7 years it didn't really restrict me very much at all. The last 3 years I have had a lot more problems with pain control and am on a lot of drugs to the point I don't want to increase them as I would be falling asleep most of the day! I am about to go into hospital to have a device internally to deliver the drugs into my spine and this will mean I need far less to control the pain with scope to increase without side effects - hopefully!

Work is a very difficult issue - so much depends on your employers and whether you are able to go part-time, if you have a pension that would enable you financially to cope etc. Many of the girls on here know much more about this than I do and I am sure they will have loads of help and advice to give you.

As to how long has anyone lived with 2ndary bone mets - I am probably one of the longer lived here. I was first diagnosed with breast cancer in 1990 and as I have said above dx with bone mets in 2002. Val (Scottishlass) I think was dx after me with primary bc but before me with 2ndaries!!

It's lovely that we are seeing a few more new folk joining in.
Ooops! I wrote this immediately after elginquine posted and have just come back to the laptop to find I forgot to hit the post button! Sorry 😞

Dawn
xx

[lizcat]

Hi ladies,

I am now on laptop again and able to post a proper reply - when I'm on my kindle, something funny happens when typing so it takes ages....

Jacqui (Swanie) - I am sorry to hear about you losing your brother. Cancer is such a cruel disease. My condolences to you and your family at such a traumatic time.

Big welcome, if you know what I mean, to porkie and elginquine. I hope you both manage to get the support and help you need from this thread and some handy tips on dealing with everything.

Elgin - I have had bone mets since primary diagnosis at same time in July 07. Had chemo first followed by mx and rads. For 4.5 yrs now I have been on monthly zometa and arimidex, even when there was some spread a couple of years ago which was sorted with a quick rads blast. There is now an alternative to zometa in the form of denosumab, which is an injection, and another hormone type combo of everolimus and exemestane. Both have apparently shown good results but are only currently available via the cancer drugs fund so there are strict criteria attached to them. Oh, just realised you must be in Scotland so that won't be the same - sorry to raise your hopes but it might be worth asking about anyway.

Dawn - I do hope you get the op done quickly and then you will get some much better pain relief.

The snow is coming down in light flakes here but melting when it lands so I think we must be the only area in the country not to have had any. Ah well.

Keep warm and have a good weekend everyone xx

[Guest user]

Lots of people to reply to, but I think I can most help the Elginquine. Jacquie tho - I'm so sorry about your brother - there's two things- pancreatic cancer and Motor neurone disease which pre BC I dreaded getting. Pancreatic is so cruel and as you say so under researched and publicised.
Elginquine - we must share oncs - Dr T? I'm at ARI but I know she and her staff go up to Elgin. Please don't panic too much about chemo - like you sound to be, hormones have failed me, but the next step is oral chemo - Xeloda / Capecitebine which you take twice a day for 2 weeks then have a week off. I like the bone mets thread but there's one nearly as good on xeloda - http://www.breastcancercare.org.uk/community/forums/xeloda-capecitabine-your-top-tips-please which might make you feel a bity easier. I just saw Dr McM this am and after 6 cycles I'm actually florishing - I feel better than I have for years!! And I struggled badly on FEC T 4 years ago.
Work's difficult and I'm glad you've had a 'Got It' moment and decided to go part time. I've actually retired (at 54) and tho I sometimes wish I could contribute somehow, I know I'm not physically up to it.
You've probably realised there are a fair few people here with long standing bone mets - Dawn, Val down in Edinburgh and Belinda to name but 3. The palliative care doc - Gordon L said to me that bone mets are most common and cause most difficulty in terms of pain and getting about but are the best to have as they don't kill you as easily as visceral ones - not to say there aren't long term visceral people out there, I just got the impression if you're going to have mets have bones!!
You're not far from me - Ellon - if you want to meet up then please get in touch. If thats too much - I do understand - I have clinical depresion and find people very hard but somehow the cancer is helping me in that respect - did you know there's a Facebook secondary ladies group which is really supportive and also BCPALs site has a good secondary area.
Chin up - all is not lost - you have a long time with us yet.
Hugs to all othe rboneyt ladies - I think it's Dawn who moaned about replies taling you to first page - its so frustarting!! Bring on the new forum!

Nina

[Porkie]

Thank you Jacqui, Louise and Nicky for your kind welcome - it means a lot. I am really sorry for your loss Jacqui, whilst very different I lost my husband 6 years ago in a road accident and when you lose somebody so quickly like that or your brother it does make me realise that the the cancer we have is much better than a lot of others. Ekginquine - I am sorry I cant help answer your question - but I do know of a lady who has been around for in excess of 20 years with bone mets so there is always hope. Jackiex

[Guest user]

Hi Ladies
I have been in & out of the sight since 2008, mostly reading, not good at finding the words to post.
Its a good place to come when you need to know that your not alone.
I am having a major wobby as bone mets continue to spread, I was aware that the cancer would get used to the hormone treatment & I have had a few changes over the last 3 years. I am having Bi Monthly Zometa but will need to come off it soon ( I am told it causes damage to the kidneys). What I had not realised & came as a shock is that I am running out of hormone treatment options and the oncol and started to talking chemo.....again. My heart sinks to my feet as I had two different tpyes on chemo in 2008 and 6 weeks of rads and then another blast of rads in 20011. at some point I will need to make a decision about agreeing to chemo or leaving it. will 6 months of feeling ill equate to 18months of more time....and even then there is a great chance it won't work. It did not do much good first time round. Sorry if that sounds negative but its how I feel & I can't seem to get my head past that thought. can anyone give me their experience and thought and feelings on this issue?
The other problem is what do I do about work? I currently full -time but its getting more difficult to cope with the hours and the work life blance. actually I think by writing this I have just made the decision to ask to go part time.
I only have spread in my bones, but I wonder what happens, when it just keeps spreading & spreading, what is the longest someone as lived with secondary bone cancer, does anyone have ideas or thoughts.
My thoughts are randon & I know I need to take some space to settle my thoughts again.........Thanks for the space to vent my frustrations and wobbles.

[swanie]

Thank you for all your kind thoughts. They are a real comfort.
You are right Louisa, if you have got to have cancer this brand is not so bad. My brother had about 6 weeks from diagnosis to the end. Yes ours is treatable and you ladies are living proof of that. You all bear your trials and tribulations with such good grace and humour it really helps me and others, I am sure, to keep positive
Hi there Porkie sorry you have to join this thread. It sounds like things are going well for you - good luck with the PET scan.
Jacqui x

[nicky08]

Hi ladies, a lot to catch up on and I hope I dont miss anyone out.
Jacqui - I am so sorry to hear about your brother, it must be such a sad time for you and the family right now. I lost a friend to pancreatic cancer 2 years ago and it does seem to be one of that cancers that is very difficult to treat but also massively underfunded for research.
Jackie - I'm glad you have posted after being part of the boney ladies for a while now. As I'm sure you have read we are a supportive group and the sharing of our experiences good and bad does help. Or at least gives us lots of questions to ask our oncologists!
Val - poor you 😞 that's not something you wanted to hear or have to deal with. I hope the rads sort you out and the pain goes, everyone who has had radiotherapy for mets seems to say how good it can be. Good luck with everything and we will be supporting you all the way, keep wagging that tail 😉
Nina and Claire - great news - that's what we all want to hear 🙂 Oh, and I sympathise with you Nina about the digestive system problems! I had my ovaries zapped in 2008, 'just a couple of days discomfort' they said. You must be joking, more like four weeks! However thoroughly recommended for weight loss LOL
Hollymeg - we seem to be in a similar place, yikes. I had the results of my thigh/pelvic X ray yesterday and the bones are fine but I still have pain which is being investigated. CT next (for any progression) then MRI if no degeneration of spine is seen. At least I've got the ball rolling and being listened to. It's coming on here that has made me aware of what problems spine mets can cause and also how pain that seems unrelated can actually be caused by compression etc.
Sorry if I've missed anyone out but sending hugs to all of those dealing with pain, horrible bosses, scanxiety and all the other rubbish we have to deal with.
Nicky x

[NannieSpiky]

Jacqui
Sorry to hear of yor loss. Have sent you a PM.
Liz x

[livlassie]

Jackie, so sorry that you have to be on here at all but as you are aware, it it will be a positive experience to continue posting and that the ladies will all gather round you and offer great wisdom and comfort. I have been on Letrozole for multiple bone mets for 17 months now and all is stable. Reading what the other bony ladies say on here has made me leass scared for that time when the Letrozole stops working.

Louisa X

[livlassie]

Jacqui I was so sorry to read that you had lost your brother but glad that when the end came it was nice and peaceful for him.
I lost a good friend to pancreatic cancer last year and another to gall bladder cancer. Neither of them had much time from dx to their passing on. I miss them both so much but it put my own cancer into perspective. Don't get me wrong ladies, i'd really rather i didn't have it, but it's treatable and that gives me time.
Your brother knew he was loved Jacqui and in the end that's all we have and all that matters. Take good care of yourself.

Louisa x

[Porkie]

Hello to all you ladies on the Bone Thread. This is the first time I have posted so I hope that I have done it properly. I registered for the site nearly 2 years ago when I received my primary / secondary diagnosis but have never had the courage to post before. I have read lots of the posts however and have found them very informative and inspirational, especially when I was initially diagnosed. I have numberous mets to my bones but at the moment am keeping quite well with the only medication being letrozole so keeping fingers crossed that it will continue working for a little while yet. I did have to have a round of radiotherapy to my lower back towards then end of last year which caused severe digestive problems but feel lucky that to date I have not had to endure some of the pain and difficulties that many others have experienced on the site. I am due a PET scan next week so am currently keeping fingers crossed that all will be well. But posting really to just say thank you to all the ladies on the thread who have helped me come to terms and remain positive despite this horrible disease. Jackie

[hollymeg]

Thanks Dawn im on Amitriptaline but not for this pain originally. went on it for sleep and depressin. been on it over a year when i decided to come off it oct time.. by beginning of december this pain begain and has never gone. makes me wonder how long the Amatriptoline was hiding it. my doc has put me back on it now for the pain, not that it is working now, im only on 25mg a day, maybe i need to speak to doc about upping it.. thanks for your advice, i will pop back on and let you know how i get on.. xxx

[Katie2002]

Jacqui
words seem so hollow at times like these but I am so sorry for your loss

Xxx

[myfanwy18]

So sorry Jacqui to hear of your loss. Sending you much love at this sad time.
Claire xxx

[swanie]

HI - this may not be the right place to put this but I am a bony lady and this is the thread I tend to go to. My brother died today . He had pancreatic cancer with extensive spread to the liver and bones. He died in a hospice it was a good and peaceful death and oddly make me feel less afraid of the possible future as far as I am concerned. Just feel a bit odd and hollow around the chest and tummy.
thanks for giving me the space to write this.
Jacquix
PS I have just started Denosumab - it is great a quick jab (I had it in the belly there is a bit of slack there) a bit of stinginess otherwise no discomfort. Don't think I had any SE possibly a bit of mild nausea for 2 days but that could have been something else. If it is offered definitely reccommended.

[myfanwy18]

Hi boney ladies,
Livlassie, yes, I've found my OH just does not want to contemplate my illness at all, sometimes that's a good thing for me sometime not.
Nina, so pleased you're stable, long may it continue.
Joanne, I was on tamoxifen but it didn't work so had to had a round of Taxol, I'm on Arimidex now so I wouldn't worry that all hormone treatment isn't suitable.
Hollymeg, sorry to hear about your friends. It must bring you very low.
Val, ah Val, sorry to hear you're having a tough time at the moment, big, big hugs to you, as mentioned by others, you really are very special and have helped me so much on this bumpy old road.
I would like to share my good news. Another scan result today, shaking in my boots but my ONC said my scan result was the best he could have ever hoped for. No new bone mets, nothing anywhere else. So pleased after some of the gloomy meetings I had last year with medical folk. I told him the only thing that makes me feel bad is coming into the hospital!
Work - well, as mentioned by some above, it has been a battle. The year before last they tried to get me out with a disciplinary hearing, but after taking advice I managed to get them eating their words at said hearing and saying nothing would go on my record and today HR person couldn't have been nice enough. I think they try and upset us to try to get us to leave but at the end of the day, we didn't chose to be ill.
Anyway, as you ladies will probably appreciate, after a week of fretting I'm feeling so much more relaxed and plan to go racing at Cheltenham this weekend. It is just up the road which is lucky for me.
Claire xx

[dawnhc]

Hollymeg I can sympathise/empathise with the pain you have. The major part of my pain is my right thigh/hip and most of the surface of my thigh suffers from this dreadful sensation of having been burnt. I cannot bear to touch my thigh and recently the skin feels quite different. The worse of it comes on late afternoon/evening and is really bad at night when I also get the feeling the whole inner thigh is going to go into spasm but never quite gets there! Sorry that is all a bit too much about me - back to your question (grrr why does the page always go back to the first one when you reply! I think you ask if it is nerve related. Mine certainly is because I know that the nerves that exit at L2 are totally enclosed by a tumour. That doesn't mean you have that going on but yours does sound like nerves are involved. You must watch out for any numbness, or problems with bowels or passing urine, or weakness in the thigh - they all need to be reported immediately. What medication are you on for the pain? Although I haven't had success with any the usual ones where nerves are involved would be amitriptyline or pregabalin. I have found some help with Lidocaine patches (Versatis). They are quite large patches about 3"x5" and you can put them 12hrs on 12hrs off.

Dawn
xx

[hollymeg]

Hi there, i dont pop on very often but this is the thread i keep coming back to. Val. im so sorry your struggling with pain. you have helped us all so much, i still remember our chat on the phone when i was worried way back when.. i hope you get your pain under controlsoon hun

quick update, ive had a bone scan and xray for the pain in my hip/thigh.. they showed 'nothing significant' ive seen the consultant today and he orderd a CT scan of my lower spine and hips, not sure what he is expecting to find. my pain is like a burning pain and im wondering if its a trapped nerve.. i do have 'Thinning of the spine'. i have no problems walking.. just when i sit and lie down.. does this sound familiar to anyone? i hate the waiting, waiting, waiting.. talking of waiting i joined the regular clinic for results.. was so hard to watch the ladies come out, 5 mins if it was good.. half hour or so if it wasnt. brought back so many horrible memories

been a crap 8 days, we have sadly lost 3 special friends to breast cancer .. when will they find a cure and stop loosing ladies too young to BC
thanks for listening ladies, hope you all keep warm and keep fighting xxx

[Guest user]

Val, on the side-effects of the radio-therapy, I suspect I was very lucky. I had T12 done (which is the lowest Thorax one just before you get to L1). I have slight nausea one day (3rd zappage), but this may have been partly due to the Ibandronic acid tablet too. I stopped taking the Ibandronic for the rest of the Radio-therapy time and didn't feel sick at all.
Also, because I was moving so badly before the zaps, they asked me at my planning session whether I wanted to be on my back or my front. I chose to lie on my back (haven't tried lying on my front or getting back up again since my mx) and they did my tattoos on the front but them zapped me from behind.

[NannieSpiky]

Just wanted to send cyber hugs to those of you who are experiencing pain and discomfort at the moment, especially Val and Dawn who always send encouragement to everyone else. This time of the year always seems to be hard even when you are feeling ok. I am presently in the waiting room and get my ct results next week. No pain but slight discomfort from neck nodes which swell up with fluid from time to time so maybe radiotherapy? I will also see if the met in my liver is still growing, if so will probably be back on chemo.
joanne - I am currently on exemestane but looks like it might have stopped working. Tamoxifen and letrozole didn't work for long either even though I am strongly ER+PR+. I seem to go from chemo to hormone tablets then back to chemo - maybe they will try you on another hormone tablet when you have finished the taxotere?
Wonderful 'unofficial' news for you Nina - what a lovely nurse you have.
Liz- I also have acupuncture, although I have to pay for mine- but I find it so relaxing especially when heat is applied to the needles, complete bliss! Just love the feeling of being pampered for 45 minutes and I am convinced it is helping me ( the mind is a powerful tool!)
love to all secs ladies. Liz x

[dawnhc]

Well done Nina for finding that backdoor 🙂 Waiting for results is so difficult when you know they have them sitting there. Now you will have to be a good actress when you get your official results! Like Val I have been a bit quiet - though I must say Val you still do pretty well offering supportive posts here 🙂 but I find the pain plus the pills leave me little energy and when I sit down with my laptop I keep nodding off. The day for my op I suspect isn't far off. The pain consultant emailed me and did say that he has 2 others on his list before me which sounds to me like it won't be long. I must confess I am a bit scared about it which isn't like me so I have to keep focussing on the end result, and the thought that I could be free from this constant pain and spend more of the day awake does appeal. Is it worth asking your onc about this Val, or are you not at that point yet? I really hope now that they know what is causing your pain, that the rads will give you relief. Do you know which part of your lower back is causing the problem? Have they said what nice chemo treats they have in store for you? I do feel for those of you going through regular chemo regimes with secondaries. Having faced so much of them in my earlier years with primary bc's I would hate to being going through them again now so just have to keep hoping the herceptin continues to do it for me.

It's a shame so many of you are having hassles with employers not recognising your rights properly under the Disability Act especially when they set out to make life difficult and unpleasant for you. I know I am probably a fair bit older than most of you but I do still work! albeit for my own company. I do a lot less now than I used to but it still seems to take me twice as long as it did!

Before this turns into another essay I better say goodnight and get myself off to bed. Love to you all
Dawn
xx

[JulieD]

Hugs to all struggling with pain or work or treatments other nasties. Good news on unofficial results brromstick!
SL, sory the pain is mets related but everything crossed they get pain under control quickly for you now they know.Hope your blood and stamina improve too and you find something to really tempt your appetite.
Still wating for results from CT and MRI scans as had to cancel yesterdays Onc appt due to snow, managed to fit me in for next week so not too long before results now.
Hope the rest of the week ges well for us all xx

[Buffy3]

Joanne, I am just about to have my 5 th EC chemo. The docs havent said what will happen next but I have been told there are maintenance drugs by the BC nurse. I was under the impression that if one didnt work- tamoxifen didnt work for me-then another one can be tried. The docs were really waiting to see how i responded to chemo before they decide what to do with me...after more scans. Ill ask on Friday again but unsure I'll get an answer yet. Someone else may have more experience of this...sorry i cant help more.
Mel

[joanne130]

Val - I'm another one you gave hope and inspirationtoo when I was first diagnosed, so sending hugs your way. Nina great news on the 'unoffical' your stable, sogreat to hear.
This is a really random question, and know I'm completely jumping the gun but - I'm going to be starting on taxotere in the next few weeks and I'm now starting to wonder if that means the hormone therapies are completely defunct for me (probably being really naive and stupid with the question!) but as I've only had tamoxifen and letrozole was hoping to be eligible for a lot more further down the line.
Sorry for rant but my mind is running away with me!
joanne