68418members
359942posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Highlighted
Member

Re: Bone mets - please join in

Good afternoon ladies
Lovely words Stresshead and Janette, I could cry every time I think of my daughter and what you say sums up exactly how I feel.
Marie, my thoughts about the Easter weekend too. We're just off for a break in the Lakes and only thinking of this horrible disease when I have to come back to reality for treatment at the end of next week.
Belinda, glad transfusion has made you feel brighter, hope it lasts a long time.
Kaye, have a lovely weekend away and relax as much as you can.
Chocolates, you'd better be having a break from school now and not doing anything related to it!
Hope Helen and Bev had a good night.
Lynne, you're not being a nuisance and never forget it.
Love to everyone
LD x
Highlighted
Member

Re: Bone mets - please join in

Marie, i agree with you, i only said to my hubby this morning, lets have a good easter wkend relax with lots of chocolate and a few cheeky glasses of wine 🙂 sounds like a plan!!
Janette x
Highlighted
Member

Re: Bone mets - please join in

Hi ladies
Stresshead, i totally agree with everything you have said re: how it effects the whole family, my daughter is 23 and it breaks my heart to think i may not be here to see her walk down the aisle and be there for her when she has children, i really have to push it so far to the back of my mind, the last 12 months since my mets dx she has been such a strong support to me and i am so proud of her....need to stop there cos the tears are coming!!
Lynne, you are not mithering you are "being heard" me and my hubby mithered my Onc, bcn and scan dept last wk to get scans and appt brought forward, should not have to do this and you can tell they don't like it but TOUGH luck, you have to think of number 1 ladies!!!
Hugs to all Janette x x
Highlighted
Member

Re: Bone mets - please join in

No, No, No you are NOT a nuisance, just someone in a very vulnerable place. I am now going to get my polish out to make sure my angry eyes are A1.

Lovely ladies can I suggest that we allow ourselves this bank holiday off from our troubles, I know this is really hard, but I am really going to try enjoy family time and chocolate and not alow ****** to spoil it. Hoping the Easter bunny has remembered me (he had better or there will be trouble ).

 

Hugs and chocolate to you all

Mariexxxxx

 

Highlighted
Member

Re: Bone mets - please join in

Hi Janette. Hope you're feeling better today after you long day yesterday.

I have the same scan on the 13th .. My injection is at 1200 and the scan at 1500 so not as late as yours.....but I have to have an x-ray as well..I assume that they will do that between the two??

Saw my onc last week. I have a pain in my groin which, despite the change of brand of Letrozole - hasn't got any better, and sometimes keeps me awake I usually take paracetamol and a sleeping tablet when this happens.Other joint pains have improved a little since the change in brand. I take naproxen and paracetamol for my boney aches and pains.......and on the whole manage okay on them. Far fewer problems than many of you lovely ladies

The other onc I saw 6 months ago said a scan was not necessary since my TMs were not going up.....after much persuasion he did a CT scan which showed stable....for which I am very grateful, but that would not have shown my hip/groin area.

When I had my first bone scan over two years ago my groin/hip did not show any mets and since the TMs have fallien and Letrozole appears to be holding the cancer he said he didn't think this pain was cancer related.

The onc I saw last week has different views on TMs and he arranged the full bone scan and x.ray.
I can see where the first onc is coming from and I do understand what he is telling me - however even if the pain is not cancer related it must be something and I would like to know what it is....even if just for reassurance.
Why do I feel as if I am being a nuiscance?
Highlighted
Member

Re: Bone mets - please join in

Just seen this post Helen..they use amytriptyline for nerve pain..my husband had it after a throat op. You get both benefits !! xx
Highlighted
Member

Re: Bone mets - please join in

Helen, so glad to hear you are feeling a little better about things..its unbelievable the problems you have had. You are a very special lady. Take care.x

Highlighted
Member

Re: Bone mets - please join in

Sianie, please dont feel guilty for ranting on here and you never need to apologise. I know exactly how your mum feels and i have a pretty good idea of how you feel as i too have a beautiful caring daughter and it truly breaks my heart to know what i am putting her through. Everyone tells me i shouldnt feel guilty..i didnt ask for this...but you cant help it. I'm sure all your mum wants to do is crawl into a hole and not be a worry to anyone..thats certainyl how i feel a lot of the time. I'm sure she will rally soon...i know its very hard on you but all you can do is just keep loving her and coaxing her. Believe me, however bad things get she has a daughter who she loves very much and of whom she is very proud!! People who have no experience of this disease have no idea of the devastting effect it has on the whole family.

Sending love and hugs to everyone.x

Highlighted
Member

Re: Bone mets - please join in

Hi ladies hope we're all doing ok,Helen glad they've given you something for your pain hope it eases.Belinda it's good you had your transfusion it gives you a bit more energy,hope the chemo doesn't knock it back down.
Janette it is always an anxious time when we are having scans etc.
Well had my 9th lot of Cape yesterday but they are going to scan my head due to lots of pain I've been having at back of head,just hope it's nothing to worry about this is just like a roller coaster ride.
Well I'm off down the caravan tomorrow for four days hope the weather picks up a bit.
Have alovely Easter all
Love to you all
Kaye xxx
Highlighted
Member

Re: Bone mets - please join in

Yes with you there ff, I miss Xeloda. 🙂 Not convinced this chemo is doing much for me either. Let's hope we have an easier summer. Take care! xxx
Highlighted
Community Champion

Re: Bone mets - please join in

Belinda, I hope the chemo doesn't knock it down on Friday. You need a little break. I'm not liking my chemo. Every time on my second dose of the cycle my white count is down, so I have to go back the next day for the neulasta. Just tired of infusions and injections. Sure miss just swallowing xeloda. I wish they had more oral chemos. 

Highlighted
Member

Re: Bone mets - please join in

I did, thank you, funnyface, yes I'm feeling brighter and hoping I have a little gap before I need another one but chemo again on Friday. XXXX
Highlighted
Community Champion

Re: Bone mets - please join in

Belinda, Hope you got that transfusion and feel better. 

Highlighted
Member

Re: Bone mets - please join in

Hi Janette, what a long day ! You really deserve a visit from the Easter bunny. Take care Marie xxx

 

Highlighted
Member

Re: Bone mets - please join in

Hi, thanks Helen, Chocs and LD, Just got back from hospital, glad that is over with, hate those bone scans they seem to take forever.
Chocs think im just struggling at the min cos of scans, TMs up and the dreaded results in 2wks!!
For the most time i'm fine with things but as you all know only too well every so often reality bites...hard!!
Going to over indulge over the wkend with lots of easter eggs 🙂 that will cheer me up.
Hugs Janette x x
Highlighted
Member

Re: Bone mets - please join in

Yes I agree, I think we must be able to be honest here, in some respects it's the only place we can be,  Marie xxxx

Highlighted
Member

Re: Bone mets - please join in

Hi Helen, sounds like two for the price of one re your pain meds!!! Don't take too many mind you - you'll be high as a kite and free of pain. And goodness only knows how the husbands will suffer. I'm glad you felt that your meeting was beneficial and that your sister was there with you. One step at a time. I totally understand why you didn't tell us about what onc said straight away but remember we are always here for you and the beauty of this forum is that we all support each other whatever is going on. Please never feel that you need to not say something as it might upset us. I can only speak for myself but if we don't say how we are feeling and what's going on it negates the point to some extent of this forum. However some people chose not to share and that fine but I don't think it should be based on upsetting people. Perhaps others can join in to see how we all feel - after all this is a lifeline for us so it needs to be right.
Janette - hope scan has gone well. Shame they couldn't coordinate appts instead of you having to go twice in one day. Do you think your current feelings are around results of scan etc? I'm dreadful around scan time and my moods fluctuate big style. If not then is there anyone you can talk things through with? Sending you a huge hug.
Hope everyone else is doing ok. I'm now looking forward to 10 straight days off - bring it on.
Hxxx
Highlighted
Community Champion

Re: Bone mets - please join in

Just a quick one for Helen, I've had them for nerve pain too and so have quite a few of my SBC friends, hope that puts your mind at rest
Highlighted
Member

Re: Bone mets - please join in

Lovely picture Helen, nice to see what you look like. Lovely to hear from you today too. Hope your new pills sort you out and you and Belinda can get planning!
Hope the scan goes without a hitch Janette - we all have times which are worse than others living with this disease, but you'll have good days soon.
Take care
LD x
Highlighted
Member

Re: Bone mets - please join in

Thank you,Belinda xxxx,Marie xxxxx
Oh,janette,huge hugs,I do think the emotional/mental/ uncertainty/ stress is probably the worst to cope with.
Huge hugs,and we are with you for your scan xxxxxx Helen xxxxxx
Highlighted
Member

Re: Bone mets - please join in

Hi Helen, good to hear from you. Amitriptyline is used for numerous things, nerve pain, sleeping pil, headaches and its also an antidepressant, the good thing about them is they are not addictive, what strength have you been given? hope this helps.
Well bone injection today, went at 4 for injection and going back up at 7 for the scan....oh what joy!! Really struggling with the big C at the minute 😞
hugs Janette x x
Highlighted
Member

Re: Bone mets - please join in

Helen, lovely picture. 🙂 I was given Amitriptylin for my nerve pain, yes it is an anti- depressant but it is used for nerve pain too. I found it helped a lot so hope you find it works well for you. X
Highlighted
Member

Re: Bone mets - please join in

Helen I have been thinking of you lots. I met a school friend today who is a nurse , she was quite shocked by some of my experiences

eg "Madam , you have secondary breast cancer , there is no cure it can only be managed next."My husband and I were then led out the room . I wasn't even called by my name ! It still makes me cross along with where it had spread to  being sent to me in a letter , not told in a consultation.  I  did change my onc.

Sorry if I'm sounding off again, but I think this is more to to with my anxiety than thw big C .

I think we we would  all 'cope' a little better if there was a little bit mpre understanding. I apologise to all the caring good staff I know there are lots of you doing  a fantastic job, just please have a word with the insensitive ones, especially Helen's onc.

 

Take care

love Marie xxx

Highlighted
Member

Re: Bone mets - please join in

Hi,ladies,I've just googled my new nerve pain pills called Amitriptyline and it's an anti depressant !? Any body used this. This doesn't bother me as I know I may need a little "help" but a bit shocked it wasn't nerve pain killers.
Helen xxxxxx

Just needed to put picture of "me" as avatar . It reminds me im still me 😞😞
Highlighted
Member

Re: Bone mets - please join in

Good afternoon ladies, thank you for all your advice xxxxxxx

sorry I didn't post what onc said as I didn't want to upset/drag anyone down.xxxxx as I'm always such a bubbly person normally.

Meeting was good. We got an advance statement started. I can fill this in when I'm not so fragile emotionally .new nerve pills ( thanks Belinda for info xx)

She will sit with me when I'm ready to talk about more "things" . I feel I have some of my wishes noted which makes me feel a bit better.

Sooooo glad my sister was with me as she's been my rock of late and a huge emotional help.

Just need a day or so off to get head sorted then I'll be back as Belinda and I have so much to do arranging duel!

Huge hugs to every very special lady on here,I couldn't do this without you all,Helen xxxxxxxxxx
Highlighted
Member

Re: Bone mets - please join in

Good morning everyone, hope you're all doing well
Helen, I really hope your meeting today goes well and that you feel more positive after it. What about having a look at the hospice and what it can offer you, and if you don't like it don't go back.
Sianie, as I'm ER+ PR+ and HER+ I'm on Herceptin and pertuzumab like a few other ladies on here. I've been wondering if the onc is the right one for your mum as he doesn't inspire confidence.
Lindy, you must be feeling bad if you're looking forward to a blood transfusion so much! Hope it has the same effects as your last one.
Enjoy the day as best you can
LD x
Highlighted
Member

Re: Bone mets - please join in

Morning all,hope everyone is doing ok.Helen hope your appt with Mac nurse goes well today .lindy butterfly good luck with your transfusion It will def give you more energy,well off to hosp again today hopefully bloods ok so I can have my Cape xx
Take care all
Kaye xxx
Highlighted
Member

Re: Bone mets - please join in

Morning all.....can't quite believe I'm looking forward to my blood transfusion today but I am! Last one came from Mo Farah! I swear it did!
Highlighted
Member

Re: Bone mets - please join in

Sianie, her onc sounds very annoying. I suspect she has little faith in him/her! Does someone go with her?
Highlighted
Member

Re: Bone mets - please join in

Good morning everyone.

Helen I hope that your meeting with the Macmillan nurse today goes well.....and I hope that she can help you to feel better. Words fail me regarding your Onc...

Sianie it may help you and your mum to see a Macmillan nurse as well. They are there for families as well as patients.

Hope everyone else is okay.
Highlighted
Community Champion

Re: Bone mets - please join in

Oh Helen, Your onc sounds depressing. I would check out the hospice to see what they have to offer. Then I would make my choices from there. Meanwhile you need to concentrate on what makes you happy and go for it! Hugs, Funnyface

Highlighted
Member

Re: Bone mets - please join in

Thanks Lemondrizzle, if you don't mind me asking what is your treatment for liver mets ? Hope your doing ok. I'm trying to be a lovely daughter but with 3 little ones, my partner and my dad to looks after it is hard but cope nevertheless, I used to think I got my determination from my mum but now I'm not so sure, but hay what doesn't brake us only makes us stronger xxx
Highlighted
Member

Re: Bone mets - please join in

Just popped on here as I've arrived home from a weekend away and finding it hard to believe what I'm reading about oncs and their negativity and uselessness. Helen you must feel devastated, but there's so many positive stories and differing treatments available that I hope you can, in time, feel different about this setback. Your onc should be encouraging you not distressing you and it's so wrong that he takes this approach. Hope our angry eyes can focus on where it can hurt him the most!
Spaniel, your mum is so lucky having such a lovely daughter even if she can't appreciate it at the moment. Like the others, I think she is depressed which is not surprising given what's she's going through, so maybe you could have a word with her doctor to see what they suggest. I have liver mets along with bone and lungs, but so far my biggest liver met has halved in size (now only 4.3cm) so there's lots of hope for her.
Sleep well everyone
LD x
Highlighted
Member

Re: Bone mets - please join in

Hi Helen, I go to a hospice to get my denosub inj every 4 weeks. My nurse is great and always lets us know of anything new coming up. It is good to get to know everyone and they really know a lot about pain relief etc . After a while its gets familiar  and is lots  better than hospital. I wish you luck xxx

 

 

 

 

Highlighted
Member

Re: Bone mets - please join in

You all such amazing ladies to take the time to reply to my complaining. After getting my mother over to mine for tea I have now found out that her onc wanted to put her on letrozole - great if that hadn't stopped working and got her in this position, READ YOUR NOTES, said she is due a CT - had one earlier this month, READ YOUR NOTES, said now that chemo is over- 2 weeks of chemo left, AGAIN READ YOUR NOTES. Angry eyes popping out completely xxx
Highlighted
Member

Re: Bone mets - please join in

Hi Sianie
Not that age should matter but 64 is so young. Lots of great advice from all these fantastic ladies below. Let us know how you get on, keep in touch and never be afraid to come on here and talk......it's the best way.
Tons of love x
Highlighted
Member

Re: Bone mets - please join in

Sianie, the chemo I was on for liver mets was vinorelbine and it worked very well. I had eight cycles but onc took me off it to give me a break as I was having low blood counts I am now on faslodex which is a hormone treatment given by monthly injection.I should find out in four weeks if it is working. I he so because it is an easy treatment! The onc has something else lined up for me if not and I feel I can always go back to vinorelbine. Different tx work for different people. Your mum could get something that works for years and if not there are lots of treatments out there. Good luck sianie. Hopefully your mum will soon get in a better place and then you can feel better too.

Lots of love. Sheila.xxx

Highlighted
Member

Re: Bone mets - please join in

Sainie, i really feel for you, your mum is clearly struggling at the moment, she is very lucky to have such a caring daughter, could you speak to her bcn or GP maybe they could help??

Helen, hope you are ok and have read all our posts re: your thoughtless and ignorant Onc!! We are all thinking of you.
Hi to everyone else, hope you are all ok, good to all having scans, results etc.
Hugs Janette x x
Highlighted
Member

Re: Bone mets - please join in

Lindy my mum is 64 x
Highlighted
Member

Re: Bone mets - please join in

Oh Sianie, what a wonderful caring daughter you are. You clearly love your mum so much and even after difficult news are there sorting things and giving your mum hope. I really think it sounds like your mum is depressed and I'm not surprised. We all have very difficult days, which for some lasts for weeks and weeks. Some of us need help and the Dr is the right person. However getting her there is only half the battle, taking the meds is the battle. Is there a contact number for yur mums chemo ward - or a named nurse? I think it may be time for you to let them know what's going on. Even if it means you prepping the unit about yur mum so when she next goes in they can gently talk to her without saying it was you. She might well listen to them. I just can't imagine how difficult this is for you - alternatively visit the Dr yourself and talk it through. You need to be strong for your mum so must look after yourself.
Ladies, this is exactly what this forum is for. Never be afraid to bring anything up. We might appear to have a jokey manner on the more light hearted things of life, but I feel we balance that well.
Thinking of you all xx
Highlighted
Member

Re: Bone mets - please join in

Sianie
I'm a newby on here. Don't apologise....surely that's what the group is here for!
Is there anyone else she will talk to? Can the GP or a nurse do a home visit? Van I ask how old she is?
Highlighted
Member

Re: Bone mets - please join in

Lindy it is like banging my head against a brick wall I have asked her to get something to make herself feel a little happier but she won't, I did manage to get her a the Drs for something to sleep but she won't take them either xx I feel terrible complaining to everyone one here when you all have your own problems but I don't know what else to do xxx I am sorry xxx
Highlighted
Member

Re: Bone mets - please join in

Sianie
Would she see her GP? Is she on anto depressants? I went on these when I got very down and they had a hugely positive effect. I know not everyone wants to take them but have cancer is a pretty depressing place to be.
Lindy x
Highlighted
Member

Re: Bone mets - please join in

Thanks Nicky, as soon as I was told what the onc said I instantly thought of you as the length of time you were on your first hormone therapy for but in my mothers mind the onc assumption are correct and your facts are not. If she could just live for today then maybe she could see some hope but at the moment she is just sitting in her chair wasting away her life and also even refuses to speak to me now too xxx God this is so hard xxx thinking of you too Helen xxx
Highlighted
Member

Re: Bone mets - please join in

Thanks Lindy for your reply, mentally this is so so draining. My mum just can't see or look forward to anything x
Highlighted
Community Champion

Re: Bone mets - please join in

Hi Sian
It seems your Mum's oncologist is from the same school of bedside manners as Helen's! They do make me angry quoting exact timescales etc. every case is different and lots of statistics are out of date. He probably doesn't know at all about anyone's timescale on a particular treatment especially hormones. I had nearly 5 years of stability on Arimidex after initial chemo for my bone mets. This meant 6 monthly appointments at the hospital and just picking up my tablets from my local chemist and I made sure I carried on as much as normal as I could. I kept working, going on holidays and generally making the most of things. I hope your Mum can too and ignores what her onc has said - even though he is an expert in his field they do get things wrong! Also there are other treatments being developed and the one I'm on now, Perjeta, wasn't even used when I first had my mets diagnosed, it was still in the trial phase. Take care and try to reassure your Mum.
Nicky x

Highlighted
Member

Re: Bone mets - please join in

Sianie
Recently I had a liver scan and my consultant said it would make no difference to my treatment if I had liver mets. She would treat me the same. She also said she had loads of other stuff to throw at my bony mets and I've heard of people going on for years and years so try to get your mum to get the time limit out of her head. There should be other treatment after that. Big hugs to you both
Lindy
Highlighted
Member

Re: Bone mets - please join in

Dear Helen
Where there is life there is hope!
Sending you huge hugs and love and positive vibes.
Can't believe you thought of replying to my whinging post.
Lindy xx
Highlighted
Member

Re: Bone mets - please join in

Roxy12 can you refresh my memory as to what treatment you are on for liver mets, my mum had an onc appointment today and hasn't stoppef crying yet as he told her next step is hormone tablet which could last 12 to 18 months then chemo again followed but another hormone tablet again lasting for 12 to 18 months so now she has than that as she only has at the most 3 years, anyone have anything positive words they would be greatly appreciated. How everyone is doing ok ? X
Highlighted
Member

Re: Bone mets - please join in

Helen do whatever you feel is right for YOU. My hospice is just down the road, I pass the place all the time. Have never been in it though. I figure I will use it, maybe, maybe not, when I am very ill and I won't be bothered at that point that I didn't seek it out earlier. That's just me though. Others will feel very different. X