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Bone mets - please join in

stresshead
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

stresshead
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

bertie1
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
belinda
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
funnyface
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. 

belinda
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
funnyface
Community Champion

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Belinda, Hope you got that transfusion and feel better. 

Marie123
Member

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

 

rosie53
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
Marie123
Member

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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

Chocolates
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
JulieD
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
LemonDrizzle
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
2catlady
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
rosie53
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
belinda
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
Marie123
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

2catlady
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 😞😞
2catlady
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
LemonDrizzle
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
bertie1
Member

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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
Lindybutterfly
Member

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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!
Lindybutterfly
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?
Lynnq
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.
funnyface
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

Sianie
Member

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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
LemonDrizzle
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
edwina64
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

 

 

 

 

Sianie
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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
Lindybutterfly
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
roxy12
Member

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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

rosie53
Member

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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
Sianie
Member

Re: Bone mets - please join in

Lindy my mum is 64 x
Chocolates
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
Lindybutterfly
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?
Sianie
Member

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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
Lindybutterfly
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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
Sianie
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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
Sianie
Member

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Thanks Lindy for your reply, mentally this is so so draining. My mum just can't see or look forward to anything x
nicky08
Community Champion

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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

Lindybutterfly
Member

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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
Lindybutterfly
Member

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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
Sianie
Member

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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
belinda
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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
roxy12
Member

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Helen, what is that man like!! You need an optimistic onc not a negative one. Hi doesn't seem to be forward thinking. When I saw him two weeks  ago he had ordered eribulin for me before it was going off the drugs fund. It had gone to appeal so I will find out on Thursday when I see him. Wbr. He does that there are many other tx to try. He also says that he has patients 4 & 5 years out of w b r who are still doing fine.  I have bone, lung and liver mets beside recently found brain mets and if we can sort brain out and keep cancer in the rest of the body under control I should also be able to keep stable for a while to come. If there are any mets showing after treatment I could possibly have stereotactic to get rid of the ones left..

Don't let your onc let you down. You Need to have confidence in your team.

Sending you a massive hug and be assertive with that insensitive man!

Hope everyone else is doing okay and that your tx are going okay. Can't write any more as wbr are making me very very tired but only 3to go!

Lots of love Sheila. Xxx

Chocolates
Member

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Helen, that is just so wrong. How can anyone say that. It makes me so cross. And why is it always you. I just despair, no wonder you're so down. How do you begin to cope with that, especially as youre still trying to recover from rads and pain. You're vulnerable and that Dr had no right to say that. No one knows. However, I know that it has affected you as it would do the same to me. Forgetting about it is I'm sure so so difficult. But you do need to put it in a box and move on when you are ready. What about focussing on going back in a years time and shouting at the dr that you're still here, singing let it go loudly. Because that will be what will happen. Re the hospice I think it may be worth a look round if you feel up to it. As Nicky said you don't have to go back. However so many people do say that they manage pain the best. You don't have to though so don't go if you don't want to. The rads and pain from scc has left you in shock. One day at a time. In the meantime we are all here, holding your hand. I'll pop in later to sit with you - I need to update you on the dual and see the aprons. We can catch up then.

Hello everyone - how are we all. One more day of going in tomorrow then I'm done. Can't wait - bone juice tomorrow as well. Quite achy so will be relieved to have it despite the injection being quite painful. Huge hugs everyone. I'll be on live chat later, hope some of you can join us.
Chris, if you're reading posts thinking of you lots.
Hxxx
Desi-2
Member

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Helen I too must have missed your post about your last year comment. I would like to reasure you through on how wonderful the extra support can be from the hospice they have been amazing support to me and continue to be so even though I'm home now. Does this mean you have had further progression to the brain?

Much love Tracy xxxx
Barton
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Hello, ladies, just to wish everyone else having tests/results/treatments today the best of luck and no se's!  Hugs, Barton.x.

Barton
Member

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Helen - so sorry to hear what that nasty Onc has said to you!  Yes, angry eyes definitely needed!  I think, if you can bear it, go with Nicky's suggestion and try the hospice once to see how it is.  As she suggests, you don't have to go again if you don't want to/find it too much, too soon. I can fully understand your reluctance, and, of course, I'm guilty of "do what I say, not do what I do" syndrome (I would be extremely reluctant myself, too).  Hugs and all best wishes, Barton.x.

nicky08
Community Champion

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Oh Helen, I didn't know he has said that - more angry eyes I think are needed. As the others have said he hasn't been right so far!  However I can imagine how visiting the hospice may upset you - or the thought of visiting it anyway.  I went to our local hospice 7 years ago when I had my initial secondary dx to get some much needed relaxation therapy and it was a lovely, friendly place.  I haven't been since but I know of lots of other ladies who visit their local hospice frequently and one thing they are so good at is pain relief, something you've been suffering from.  I think you should try and go with an open mind and if it's not the place for you to re-visit then don't.  If you find it soothing or a place to be calm in then use everything they can offer you!

Take care and be kind to yourself - more peanut M & M's may be necessary.

Nicky x

ps Hi to everyone else - hope you're not being blown away today!