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Bone mets - please join in

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Re: Bone mets - please join in

Hi Debonaire

Rant away - no wonder you're feeling down in the dumps - what a rotten way to treat you. I really think most of them are clueless about how it feels to be left waiting and fearing the worst. But I wanted to reassure you that having "just" bone mets is very common, and particularly if it's a single met, I suspect the chances are good that it hasn't spread elsewhere. I have the same - a single spinal met - found at initial dx a year ago now.

Myfanwy - hope all went well with your new onc today and you have a treatment plan sorted.

finty xx

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Hi Ladies, last posted on 11 November when I heard I had a tumor on the spine - since then, pretty much nothing! I have chased and chased the CT scan the onc "urgently" wanted me to have and that will not be until 29th - booked myself in for a week later (6th Dec) to get results of the scan and to find out if the onc has made a decision yet on how he is going to treat the tumor. I do not think they realise the hell we go through just waiting and waiting. When I booked the follow up appt the secretary questioned why - "did he say he wanted to see you then ?" - AAARRGGGHH - I bet if I hadn't have called them, the appt would not have been forthcoming - and guess what - I find out if it has spread just one day before my 50th birthday - sorry to rant on, feeling really sorry for myself today !! Thanks for listening ladies, hope everyone is doing well xx

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Hello Myfanwy, this is for you.
Radiotherapy was a bit of a giggle really. How I kept still while contemplating the absurdity of the situation I found myself in, I don't know.
My hospital names it's rad machines - I was zapped by Orion, the others are Pegasus and Phoenix. They lie you on a slab and use those little tattoos to line up the machine. The key is to relax and let them push you around until you're in the right place. Then they took some images, after which the treatment happens. The machine sort of revolves around you and buzzes. It's not claustrophobic. Orion looked abit like a one-eyed robot with a row of flashing little teeth. You don't feel anything and the treatment only takes about 2 minutes. It's all the shuffling around that takes the time.
I was on a tight schedule domestically so I'm lying there thinking "Oh for Gods sake get on with it, I've got to get to Morrisons before I pick up R from ballet". So no I didn't do anything nice afterwards.
Afterwards I was so late I reversed the car into a bollard and got stuck in traffic going through the town. I didn't get to Morrisons so we had to make do with pasta from the local Co-op. Phew! What a laugh!
Anyway, enough whittering. I go again tomorrow and again and again so must get used to it.
Keep smiling, Flower. It uses less muscles, so they say.
Love Helen

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Hi everybody,

Myfanwy, hope all goes well with the new Onc tommorrow. Its ok for Mr Glum to raise his head every now and again.

It is difficult to get your head around the diagnosis when you don't feel unwell. I don't think I really accepted it until one day I was in hospital and had just finished treatment. I was in a good mood and almost skipping down the corridor as I had just received my DLA. As I was skipping I saw the McMillan Psychologist who was escorting some poor soul out of the ward. I shared my good news with her re DLA and she replied 'you see there are also some benefits of being seriously ill'. This statement had a profound effect and any elements of denial were vanquished.

At one point I went through a phase of catching myself looking at strangers and thinking, 'I bet they don't have cancer'. Thankfully I got through this phase without someone asaulting me for giving them strange looks.

I will be 45 later this week (diagnosed when I was 42) I did not think that I would reach 45 let alone be working full time. I guess I could retire but I enjoy the hustle, bustle and general madness of my job. It takes my mind off cancer.

Let us know what happens tomorrow.

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Hello Helen,

Hope the rads went ok today - looking forward to hearing your news and hope you did something nice afterwards.

I know what you mean about the foam makeshift breast - I safety pin it to my bra which does the trick - I refer to it as my pin cushion!

Seeing a new oncologist tomorrow - felt quite low today at work - everyone was so well and I'm not (although I feel fine). Just wanted to cry really - Mr Glum certainly got a grip.

Anyway - enough.

Lol
Myfanwy x

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Hi!
On the subject of underwear, have you tried a wesite called womanzone. It's great for mastectomy swimsuits as they do them all different lengths and necklines. When I get my proper boob next week, the girls and I from work are going to the posh Spa place for a bit of R&R. Still wearing a cotton wool boob which rides up all the time. Constantly rearranging myself like those two old dears from the Les Dawson show. Anyone remember them or am I the oldest of us all...
Myfanwy, will report back after being zapped tomorrow.
Love Helen

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Hi Jane, sorry you had a bad reaction but glad you were well enough to muck out Belle. Hope you continue to tolerate the new treatment and it does the job for you and kill those blighters. lOve Val

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Hi Girls
Thanks to all of you for your suggestions and shared experiences. Yes, my onc wants to see if the tumour has changed in any way. Had my first dose of Placitaxel on Friday, not pleasant as I had a reaction and ended up in a bed, however after adjusting the flow I was able to carry on. Glad to report no sickness or anything and I even mucked out Belle, my horse this morning. So good to do sommething normal for a change.

Re Leg pains. I did have a similar problem as the disease is in my right femoral head, every now and again the left leg would just stop and i would trip up with my toe. Had strange pains which were a bit like sciatica, now all pain gone and no wobbley leg.

Re big knickers.....ooohh no..... not in a million years.... Bra's.... nothing to put in them i'm afraid, they have just shrunk to two fried eggs (LOL). Probably need a couple of chicken fillets..
love to all
Jane xx

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Re: Bone mets - please join in

should have read £4 for 2 pairs. Black is best!

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Hi Nicola, No I am pleased that you told me that you had something similar as I was beginning to think it was all in my mind! What I find odd is that it is not there all the time and catches me out when I don't expect it. But the MRI should be able to see if anything is going on, and I am ok about all that. I was just glad to get the review appointment over.
I am in agreement with you about having a general anaesthetic for a bone biopsy. In fact I would insist if I ever needed it done again. I think the whole thing was a bad experience for me but not because of the treatment but the attitude of some of the staff! I was in the ward resting and asked for a painkiller. The nurse went to speak to the doctor and said the doctor was in a meeting. After an HOUR they came with paracetamol! In the end I pretended that I was ok so that we could walk to the car where I keep a bottle of Oramorph....which did the trick!
Myfanwy, I love big knickers too. I usually prefer cotton but have you tried the stretchy short like pants in Tesco. Two pairs for £2 and they just work perfectly under trousers as they don't creep up your bum.....give them a go ! Anyone needing a bra should try John Lewis as they have a 25% off just now.
Hi Sarah, Celeste,Belinda, Helen, Finty and JulieD. I hope you are all as well as can be. great to see your posts. Love Val

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Hi Jane

I had a bone biopsy in June this year. Mine was done under a general anaesthetic! It was at the top of the thigh. I went in at about 8 O'clock, had it done around lunchtime and was free to go early evening (after I had kept some dinner down and been to the toilet without any problems) It didn't really hurt, but left a nasty bruise and the area was tender for about a week, then I had to go back to have a stitch removed.

I now have a tiny cross shaped scar, but no continuing problems. My biopsy was done to determine the status of my bone mets. It was found to be the same as the primary BC, but my consultant (I was referred to an orthopaedic hospital in Gobowen, Shropshire said that it could have changed, so she wanted to be sure)

Good luck, if you are OK with anaesthetics, I would go with the general! The surgeon informed me that the bone was stronger than he was expecting, so imagine it was hard work to get a sample.

Val - sorry to hear about your leg, do get it checked out, mine feels like that sometimes. My bone mets in my hip/femur are the one that makes the bone swell rather than break down (osteoblastic I think?. Sometimes when I overdo things my left leg feels weak and as if it might give way, then bizarrely later in the day it can feel back to normal.(my own feeling is that it sometimes pushes against the joint and doesn't at other times) Sorry not trying to worry you, was more trying to say I know what that pain feels like! I am not sure where your bone mets are?

Hope everyone else is Ok,

Wishing you all a happy pain-free weekend

Nicola xx

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Hello everyone,

Love reading everything on this thread. Jane, hope your bone biopsy goes well - hopefully the results will mean you get the right treatment to get it sorted.

Val - big knickers - I love big knickers, especially went out and bought myself some new ones recently! Well, winter is almost here! Am sorry your leg is giving you a bit of jip but hopefully men/women in white coats can sort it.

Sadie, still thinking of you!

Love to all.

Myfanwy x

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Hi I had a ct guided spinal bone biopsy a few months ago. I was given a sedative and didnt feel a thing. Had to stay in bed for about 3/4 hours later. I was scarred to death about having it done but the radiologist held my hand until I was knocked out.

Hope you have the same easy biopsy mine turned out to be but dont be worried about asking for a sedative if you and they feel it would be beneficial to you.

cheers Ann B

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Hi Jane, I had a bone biopsy done about 10 years ago. I went to a different hospital to have it done and they numbed the area before they took a sample. I had to lie on my tummy and I asked a nurse if she would hold my hand which she did. For me it wasn't a pleasant experience as they had problems getting the sample as my bones were so hard. But was told that this was highly unusual so I hope yours works first time. Just make sure they give you some strong painkillers for the pain when the numbness wears off later. However I was fine once I got home and found walking to the car mysteriously made the pain go away. I had to lie in a bed on the ward for a while afterwards. I am sure you will be fine. If I can help in any way just ask.
I was at the hospital this morning for my 3 months review. I have been having a problem with my left leg. When I stand on it, it feels like it will give way, causes a bit of discomfort, then wears off. Occasionally if I am walking it feels like it is about to give way. So he is arranging an MRI scan to look if anything is causing it. My tumour markers have more than doubled since I had them done last time, but he is not putting me back on chemo just yet. Wants to see the scan and if needed he will then arrange a CT Scan after that. The clinic was running 1 and a half hours late and I saw the Registrar this time. He fully examined my feet, legs and back as well as the usual breast examination. I was wearaing a new bra thankfully but never thought I would have to take off my trousers and was wearing BIG stretchy knickers that I like to wear under trousers! I am happy with his decision about the scan....it may lead to more radiotherapy, but too soon to think of that just yet. Have a lovely weekend everyone. Take care, love Val

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Hi Girls
Wondered if anyone has had a bone biopsy....? Onc has now said it was either that or a liver biopsy after looking at my CT scan but thought accessing a bone would be easier..Sounds painful whichever. Oouch

luv Jane xx

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Just a thought............ hamsters go round and round on wheels don't they. Is this another SE??????????? lol
Sadie, thinking of you x
Belinda, hi again. Nice to see you posting.
Myfanwy Hope the new onc kicks bottom! It makes all the difference and good for you for asking for a second opinion. My onc is pretty good, and I feel very very lucky so far. He has a very dry sense of humour,last visit he informed me that I was to go on some new poison (tax and herceptin) for 4 cycles. i asked him if my sleep pattern would be a problem. Oh yes, he said matter of factly, invest in some good books and plenty of tv on the planner! Then he risked a sympathetic smile. I think he is hench!
x sarah

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Hi Sadie,

Thinking of you this evening - and remembering when I had the same op. This is the scariest and the lonliest part but it does get better from here on in (as long as they don't put you on hamsters - see previous post)

Best of luck to everyone and stay well

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Oh..how weird..hamsters!!???
Just posting to say hang on in there all..I had a rotten start, hip fracture but 8 years later, new hip and my bones are doing very, very well. I need no painkillers but was on morphine and in hospital at the start of this 'journey.'
x

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Hello everyone,

I've been reading your posts and you really have made me chuckle. Thank you also for all your support - I see my new onc next Tuesday, he better be good else I'll chain myself to the railings as per Helen's advice! Helen, good luck next week - my rads are still on for the 24th so we must compare notes.

I love the idea that all the little furry animals in the world don't just make us feel good when we cuddle them but (whatever they do to them, lets not go there) make us better as well - thinking of Alex's hamsters!

Also Sadie, if you read this later hope your feeling a bit better and join us again soon.

Be seeing you.

Lol
Myfanwy

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Hello Ladies, please excuse the spelling as I've left my glasses ar work!!!
Sadie - hope today went ok. My thoughts were with you
Myfanwy - Sound like a right shower at your hjospital, You'll ahve to lie dowmn ain a corridor and not move until you've got some answers. It's good lthat life seema ordinary at work. Northings changed really. You're still you but with a little bit od extra information. Sometimes I wonder if it would have been better not to know about my bone mets. Life goes on and you have a future.
Alex - I take Arimidex. Perhaps that's maade of guinea pigs.....

Love Helen

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myfanwy - have PM'd you. finty x

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Re: Bone mets - please join in

Hi all,
Sadie I know you won't read this till some time after your op but I just wanted to let you know your in my thoughts. I hope the op goes really well and that the recovery process is as fast and easy as possible. Hugs x

Jane, I think with any chemo we have to be careful about infections , ask your team if you need to be any more vigilant on weekly. I'm glad you've got support and of course love on home front but you're right you can still feel very alone, I hope you will find the forums helpful. I hope things are getting easier and wish you strength.

Myfanwy, I think you've been treated very shoddily! I hope your appt with new onc is quick and gets you back on track.I'm only on Femera and bone juice and I think that's quite normal for bone only mets, without the bone juice you probably feel a little vulnerable so I hope you get things sorted soon. Keep coming here, it does help to share x

Alex, HAMPSTERS! yeuch!can understand why you wanted to talk to someone, had no idea myself.Not on Avastin myself so doesn't directly baffect me at the moment but a very interesting piece of info! Hope your treatments are going ok.

Helen hope all is well with you and rads go well on 22nd

Best wishes to you all, love Julie x

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Hi Myfanwy,

I am not surprised you feel a bit glum, and I am guessing you feel quite rejected and not cared about. The response perhaps confirms that you made the right decision to change your onc.

I had treatment today, herceptin and bone juice. After treatment I went to the local Maggies centre because there is free tea coffee and biscuits and because if I hung around for half an hour I would not get back to work in time to chair a meeting.

I was sat at table drinking my coffee I picked up a magazine about cancer. It had articles in it about diet etc. There was one article about all the different drugs used to treat cancer, so I began to read it. You can imagine the shock I had when I read that avastin is made from hamsters, yes hamsters. I re-read it 3 times as I could not believe my eyes.

I wanted desperately wanted to discuss this piece of info, with other people at Maggies but I thought they might think I was a bit bonkers, so I drank my coffee and left.

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Hello everyone,

I've enjoyed reading all the posts.

Sadie, all the best for tomorrow, fingers crossed and a big hug.

Helen, good luck with the rads on the 22nd - you must let me know how it goes.

I'm not sure whats going to happen at the moment. My initial ONC had arranged for me to have treatment (rads) but I had asked my original breast consultant for another ONC (recommended to me some time before). First ONC now wont see me (went this morning and a nurse asked me what I was doing there - said I was there for my health!) She also said don't bother with the next appointment either (bone juice injection) and also said the rad appointments might not happen either. She said my file was on the new ONC's desk and I would get an appointment with him.

I feel in a very strange place, back at work and things seem normal, no treatment apart from Tamoxifen (and sleeping tablets) and knowing I've got secondary BC in the bones.

Sorry all for being glum but I feel as though nobody at the hospital seems to be very concerned about me.

Myfanwy

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Thanks Julie..... I have lots of love andd support here at home but as you know, unless you are actually experiencing the disease or treatment, you do feel very alone, particularly after a set back. I do try to stay positive, keeping myself busy and trying to 'be normal' doing 'normal things'.....dammed hard though..... I wondered if anyone out there had had weekly chemo and wondered what i should expect? Will I have to be extra carfeful regarding infection, should i stay away from the world and his granny?? Is it worth buying those new christmas shoes???? So many questions..sorry,making myself depressed (LOL)!
Anyway, things will start rolling on Friday, will keep you all informed.

Sadie.... Hope your op goes well....and will be thinking of you and wishing positive thoughts
Hugs to all
Jane xx

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hi Jane,
You're not pathetic, it's a tough blow when you get news of setback so no wonder you're feeling fragile. This blasted desease is so difficult to try to understand it's so confusing when tumours grow but markers decrease, however the next treatment will hopefully kick in very quickly and get you back on even track. Cyber hugs to you, Julie x

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Hi ladies
Hope you don't mind me joing in. I've just been told my liver tumours are getting bigger, after 4 x A+C chemo. Now having to change to Taxol, on a weekly basis. Of course i'm worried but, the thing I don't understand is that i feel better than I did when I first started???? Tumour markers have come down too. Why is it that I feel so pathertic and helpless?
love to you all
JANE X

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Dear Sadie,
Thanks for update. Will be thinking of you Thursday and praying if thats ok. Enveloping you in safe and positive thoughts. Hope recovery is quick and you'll soon be back on here telling us how well you're doing!
Lots of love Julie x

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Hi Sadie,

Just seen your post. All the best on Thursday. 6 hours op still sounds pretty long! But it will be worth it if it does the trick. Hope the rads afterwards kills any cancer cells that's escaped the knife.

We'll all be holding your hands and with you in spirit by your op room.

Take your time after the op and update us in your own time.

xx

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Hi All!! A ‘Sadie’ update, but has to be brief. sitting is really painful now with the vertebrae crumbled! Sort of controlling the pain - ish! Op on Thursday to remove tumor and vertebrae – massive op, but smaller than original plan (6 hours not 14 hours!!). Less risky but will spill tumor cells, so radiotherapy important afterwards! Best Wishes to all – sorry I have not read everyone’s posts but thinking of you all!! If you can spare a thought for me 9am on Thursday, I would be grateful! Thank you and I will post again after op, but it will be a while.

Sadie XX

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Hello everyone,

Helen, I love your expressions, 'keep shovelling the tablets in if they work' - I'll always keep this in mind and it will make me smile.

Where is that Sadie - today was decision day - have we heard - no! Sadie, hope the glums haven't got the better and we all hear from you soon.

Deb, when is the CT scan? Let us all know - everybody on this site has really made it possible for me cope and get through day to day on a reasonably level plain.

Looking forward to hearing how everyone is doing.

Lol
Myfanwy

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Evening Ladies,
Wasn't going to check tonight but my fingers just strayed towards the laptop!
Welcome Debonair7! I've only just joined in and feel much better for knowing there are others out there going through the same stuff.
Will think of you tomorrow, Sadie. I'm sure you'll decide the right thing for you. Life is indeed a soap opera or, as Ronan Keating said "life is a rollacoaster, you just gotta ride it"
Love Helen

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Hi Ladies, hope you dont mind me joining you. Just heard yesterday that my recent MRI has shown a spine tumor and will find out shortly what happens next - rads, chemo, op ?? Feeling ok about that but the onc also wants a CT scan asap to check organ spread - that seems far more scary. Have read back through some of the posts and there are lots of us in the same boat so I hope we can all help each other get through whatever life throws at us next ! Keep well everyone x

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Hi Myfanwy and everyone else!!

Thanks so much for asking after me a few days ago. Sorry for the delay. My pain medication was far from sorted, but is now. Phew. I feel like a new woman!! I can actually do things!! I have a week till the op so will now be able to prepare properly and sort out everything. However, I have been told NO LIFTING, BENDING or CARRYING!! It is amazing what you can’t do with these restrictions – but I’m sticking to them!! I can’t risk it as they said it my permanently damage my nerves and I don’t want that!! In hospital again on Friday (tomorrow!!) planning what surgery to have – an impossible choice. A massive op with better chance of a good outcome but big risks, or a smaller op (still 4 hours on op table!!) with poorer out come but smaller risks (e.g. walking again, nerve damage etc) I sometimes feel like I’m in a film or a soap opera with these massive decisions having to be made – and then the dramatic music starts!!

Sadie

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Hi Ladies

Glad you're a bit less foggy about things, Myfanwy. It sounds like we're together with drugs too. I'm on arimidex. It's a bit like tamoxifen but for ladies whose ovaries aren't working. Also herceptin every three weeks along with pamidronate which helps to strengthen bones. My cancer markers show it's all working rather well so lets keep shovelling the tablets in.
The scientist in me finds this all very interesting. We really are an amazing machine. I've needed to know how all these drugs work and it's fascinating. I'll not rabbit on about the science as I don't know if any of you are "geeky" like me! But the way pamidronate works involves calcium and I too have heard that calcium supplements are good. I'm afraid drinking green tea is like sipping pond water though!
My mum seems to have improved. She took my dx very hard but she seems to have shook off her depression a bit and is now being referred for a new knee. Go Mum!
The west country has gone cold now and the winter seems here today. The hedgehogs in the garden have stopped coming for food so must be hibernating. I know it's winter now cos I got my Christmas notebook out today and started planning.

Stay warm girls

Love Helen

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Hello everyone,

Thank you so much for all your help, it really is appreciated.

Having seen the ONC this morning my treatment is as many of you ladies thought, tamoxifen, bisphosphonates and radiotherapy. The references to chemo were just sent as a matter of course. Feeling a bit better now.

Hope everyone is having a reasonable day - its a beautiful sunny autumn day where I live - what about you?

Helen, my rads start on the 24th - blog to you later.

Also I was reading on this blog that taking calcium, Vit D and magnesium supplments is a good idea - I asked the ONC about this and she also thought it was a good thing to do. Any other suggestions for supplements? I'm drinking lots of green tea as I've read it may be helpful.

Anyway, talk later.

Love
Myfanwy18

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Hi Myfanwy, I hope the ONC is able to put your mind at rest tomorrow so that you know what treatment they are planning for you. Do you have a Breast Care Nurse at your hosptial because if I am confused or incertain about something I find that she can usually explain things to me and if she doesn't know she will try her best to find out. The uncertainty of it all is really difficult and waiting for results is just the pits. We know how you feel. Hope all goea well tomorrow. Let us know how you get on.
Hi dawn, Hope you are doing ok at the moment. I am knackered tonight but it is because I was up extra early taking my Dad for a lumber puncture. No results from that for 2 weeks approx. Had to go for a nap when I got back and than had dinner. But am just as tired again now. Much love Val

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Hello Dawn,

It was lovely to get your message. I found my lump at the end of July and dx with BC early August. Had my operation to remove my breast and subsequently nodes towards end of September. I had my scans mid October and was told about the bone mets day after bone scan and put on tamoxifen. Another week passed and I saw my ONC again when she said I would need radio therapy treatment and possibly chemo later on. A week on I now don't know what to expect when I meet my ONC tomorrow, thought it was just to get marked up for radio therapy but not sure now I have received all the paperwork regarding chemotherapy. Still no date to have monthly bone injection. I'll let you know tomorrow. All a bit scary at the moment.

Love
Myfanwy

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Grrr.... I posted quite a long reply then went to check something and ended up losing what I had already typed!!!

So myfanwy I was answering your post! I will try again. Like Val (scottishlass) I really don't know how those of us diagnosed long ago managed to get through it all without the backup of forums like this. I do remember when I was dx with bone mets that i had weeks before I would end up in a wheelchair and probably just months before I died Smiley Sad. Like I think you said (only I dare not go back to check or will lose this) the staggering thing was I didn't even feel ill. From what I read myfanwy am I right in thinking it was recently that you had a mastectomy? because normally most of us would have chemo either before or after the mastectomy. It may be that they are working out the plan of action for your following treatment. Did you have radiotherapy after the mastectomy or is that what is now being arranged? Then because you are hormone positive you will get tamoxifen. The bisophophonates are to help with the bone mets and then chemo would be to mop up any nasty bu**ers that might be roaming around. It's a long haul ahead of you but you have us all here to talk to and be there to hold a hand whenever you need it - and let's all hope you have a long life ahead of you yet once this is all under control. Hope I haven't confused things even more just that I wasn't sure when your first diagnosis & mastectomy took place.

love Dawn
xx

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Sadie, hows everything going today?

Myfanwy x

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Hi Scottishlass,

I was reading your post again and found it very comforting, thank you. That obviously seems to be what we all feel when told about secondaries, thats it, we're finished! But obviously this is not the case now, perhaps 30 years ago it was. I was also thinking about you not having sites such as this when you were first dx, we must be thankful for that at least and the good advice we can all find here. Thank you again.

Love
Myfanwy

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Hi Nicky and Helen,

Helen, yes we will do the rads together if that is indeed what I shall be having, if you see my previous blog I'm not sure now - seeing ONC in the morning to try and clear things up - it would be nice to have a clear idea of what treatment they intend me to have! Nicky thanks for the information about oncology departments but the confusing thing is I have consent forms for radio therapy to take in tomorrow (handed to me by the ONC last Tuesday) and a printout and letters stating next week I'm to attend a 'chemotherapy clinic' and 'long session chemotherapy'. Do you think they have just got things a bit mixed up and should I worry?

With love.
Myfanwy

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Hi Myfanwy

I think that you may find that the treatments that you mentioned are classed as 'oncology' - it isn't just chemo, but the whole cancer treatment that is called 'oncology'!

I have the monthly Zometa (bone strengthening infusion) at the oncology dept. All of my treatments hormones - Letrozole and the Zometa are under the guidance of the oncologist.

I also have bone mets, yet am not having chemo. From listening to others on here it is common for bone mets to be treated with 'just' bisphosphonates and hormones (if not triple neg)

Hope that your appointment goes OK and that you don't end up with chemo!

Take care

Nicola x

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Hello everyone,

I'm completely confused - saw ONC last Tuesday who said my CT scan was clear but bone scan showed BC had spread to bones. I was put on tamoxifen and ONC said I would be having radio therapy together with the injection once a month for bones. Today however I have come home to appointments relating to chemo - they have my name on so not a mistake. Can you have chemo, hormone treatment and radio theraphy all at the same time - that is what it looks like to me - very confused and even more frightened as ONC didn't mention chemo at this point.

I am seeing the ONC in the morning - this appointment was supposed to be in the radiotherapy outpatients but on this tatty printout I received today it says oncology treatment.

Myfanwy18

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Re: Bone mets - please join in

What bad spelling!! 'Here' NOT 'hear'!! I blame the medication myssellyf!!
Saadiee!!

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Re: Bone mets - please join in

Hi – I’m so glad this site is hear.
It is wonderful to hear that people get through the dark patch and get on with things. My ‘dark patch’ is a little less dark today – possibly grey rather than black! The pain killers are now (eventually) at the right level – patches and loads of tablets as well. I have a chart to keep track of it all! So very sleepy – but better than in so much pain yesterday. 8 days till op and counting (if you do not count today!!) just need to keep it together till then! After this intensive radiotherapy – which sounds like it will not be too bad from all your latest posts. – Thanks for your support and I hope in weeks and months to come I can support others who are in their grey or black patch! I would like to look back in12 years time and write the post ‘scottishlass’ recently posted!
Sadie

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Re: Bone mets - please join in

Hi All, Haven't posted on this thread for a while, just so busy. Just thought I'd let you know that my test results yesterday were very good. The tumour markers have gone down again and the liver and bone mets are stable, the onc was very pleased. I don't see him again until Feb providing all is well in the meantime. Haven't time to read all the post as I have a dentist appointment which I have to go to shortly (Oh, joy!!).

Take care of yourselves and I'm sending lots of love and hugs, Dianne x x x

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Re: Bone mets - please join in

Hi ladies
Sorry to hear of your MRI results Sadie, I really hope your pain can be relieved whilst you wait for your op. Good Luck.
Hi to Myfanwy and Helen, just trying to answer your questions about how you (we) cope. I also couldn't believe how well I felt when I had my dx, didn't suspect a thing, no pain, nothing, to show I had bone mets. Therefore when I was told it was like being hit by a hammer, OH and I were stunned and just walked out of the hospital not speaking until we got home. I suppose my attitude was I couldn't do anything to change what had happened so I might as well get on with it - not being 'brave' or 'starting my battle' just bloody well getting this sodding cancer stuff kicked up the @rse! I did feel more in control, and therefore a bit better, when I started treatment. During my chemo I had several scans which showed the chemo was working so, in theory, my bones are now in a better condition that when I was 1st dx over 2 years ago as they have shown to be healing. I try not to think about 'IT' all them time and mostly I manage that, although I am luckily not in pain at the moment which makes that easier. I get on with work, play (more of that now!) and not doing anything else much different to 'before'. I realise that this is now with me for the rest of my life and don't really know how long that is but take great comfort from ladies like Val who have been living with mets for many years. However I still hate 'scan time' and 'results time' even more - we're all the same Helen!
Good luck to you all
Nicky xx

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Re: Bone mets - please join in

Hello everyone,
Myfanwy, I've had my pre-radiotherapy and now have three dinky little tattoos where they will point the machine. It's a pity they couldn't make them the eyes of a dolphin or something like that. I start my radiotherapy on the 22nd. Perhaps we could go "together". I'll think of you when I lie there and you think of me.
You'll get there. When they first told me I wondered how I could get positive again but you will. Like Scottishlass, I thought I was going to die but that's just not true. Let yourself go through the dark bit and when it's time, that wonderful brain of yours will say "Enough, let's smile".

Is anyone else freeked by scans? I jokingly said to my doc, "I really don't want any more scans as they always give bad news". It's the waiting for results that get me. So my doc said he would monitor me using cancer markers in my blood - for now anyway.

Dawn - also on the list is keeping chickens. Having just watched "Sue and Giles do the GoodLife" on TV, I'm not so sure about that one.

Keep smiling girls
Helen

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Re: Bone mets - please join in

Hi Myfanwy, I does take time. I think I thought I was going to die in a few months....but I got that wrong. It is now almost 12 years since I found out I had bone mets and I feel better now than I did 12 years ago I can assure you. It is 22 years almost since I was first diagnosed with BC. The radiotherapy didn't make me too tired and I found the process relatively easy compared to chemo. It took a few weeks to make any difference with the pain but it did help and I would have no hesitation on having it again if need be. You may feel that you are not doing very well but I think you are. You are able to put down in words your fears and that is a good thing. Just keep coming on here and put your feelings down in words and tell us just how you are. When I got diagnosed I didn't have a site like this to help me. I felt very alone and scared too. I din't know anyone with mets and there was no BC nurse who was just for people wioth secondaries. There is now...but oh I could have done with one back then. My motto always has been " one day at a time". You will get there Myfanwy, just be kind to yourself and try to rest when you can. Love Val PM me anytime you feel you need to.