68.4K members
1.2M posts
cancel
Showing results forΒ 
Search instead forΒ 
Did you mean:Β 

Bone mets - please join in

Moijan
Member

Re: Bone mets - please join in

Hi Nicky,

yes sorry about the progression...i was there in June. Hopefully your recovery will be a good as mine!

 

love and hughs, 

 

Moijanxx

rosie53
Member

Re: Bone mets - please join in

Hi Nicky, lovely to hear from you, sorry to hear that you have some progression though and you have been a bit low, but I'm sure once they have sorted your new treatment plan out you'll bounce back!
Hugs Janette xxxx
avrelia
Member

Re: Bone mets - please join in

Hi all,

Have not been here for a while, last chemo was as if it never happened. Not a single SE, not that previous were really bad. My 6 and last for now is in a few days and I hope I am going to have some nice time after that away from everything. Oh, forgot I am having a CT and bone scan next month, so, I am going to be experiencing that scanxiety everyone is talking about.

Felt a bit low today as I saw on FB that one of my classmates is gathering donations in order to go to Turkey to be treated. She is having a cervical cancer with bone mets. Just wanted to share it with someone, in order to get some kind of relief. Hope that she will have the right treatment there and she will gather money soon,as she has been under a wrong treatment for 10 months before being diagnozed.

Sharon dear, I know that staying away from family is hard, but at least I am happy that you are obviously receiving enought care and attention at that place. Stay strong and remember my favourite song-I will survive!

Nick, I am sure everyone understands why you might not be posting for a while- I am not so active as well. I do it only when I need to, and I guess that is the purpose of that forum, when we are not active, fortunately or unfortunately there are enough active ones for support and sharing. Hope your slight progression is going to be kicked off by your treatment. 

Moijan
Member

Re: Bone mets - please join in

Hi Sharon,

 

so glad to hear you are being spoilt!  You deserve a bit of that. And so pleased to hear the nurses are nice...makes a big difference. 

 

(Got my best nights sleep last night for ages.......took a sleepng tablet! But felt better than ages today.)

 

keep in touch with us all, let us know how it goes, love and hugs

 

MoijanxπŸ’šπŸ’šπŸ’™πŸ’™πŸ’šπŸ’š

funnyface
Community Champion

Re: Bone mets - please join in

Nicky, Sorry you had progression in the liver. I always find it strange that some tumors grow and others don't. I picture they should all grow the same amount. I hope your new treatment kicks a$$, bug is easy on you. Welcome back! FF

Barton
Member

Re: Bone mets - please join in

Hello Nicky, sorry to read you have progression and are having to change treatments. A very unsettling time. We all understand why you needed some time from the forum to concentrate on yourself - you deserve it - you have always been a forum stalwart!

 

I do hope you are feeling better now. Good luck with the new treatment - whatever you and your Onc decide on.

 

Hugs and best wishes. Barton.x

Barton
Member

Re: Bone mets - please join in

Hello Sharon - such good treatment! Hospice nurses are brilliant, aren't they? They were marvellous when my Mum was ill. I know they do marvellous respite treatments, too. Enjoy the pampering while you can, but get well soon!

 

Hugs and best wishes. Barton.x

JulieD
Community Champion

Re: Bone mets - please join in

Aww Nicky, sorry you've been having a rough time. It's good to see you posting but completely understand the need to concentrate on your own situation. Hope they can get biopsy sorted quickly and it's not too unpleasant, then you can get onto whichever is the best treatment for you -  good luck. Let us know how it all goes and remember we are here thinking about you and supporting you x

Carolyn52
Member

Re: Bone mets - please join in

Hiya Nicky
Welcome back ..we have really missed you and your sensible advice from years of experience ..sorry about you having to change treatments ..it's always a blow as you sort of settle in a routine with whatever is prescribed and learn to live with side effects of it.
But ..this dreadful disease keeps us on our toes and doesn't let us forget it !!
Carolyn xxxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi ladies

A long absence from me due to getting my head around slight progression in my liver (all bone mets stable by the way) and working out the treatment plan. It's all a bit up in the air despite expecting to change treatments this week as my onc and I have decided I should have another liver biopsy done. Not the most comfortable of experiences I know from the last one but better to have up to date info rather than move onto something that wouldn't work anyway. So, that's my little update - and excuse!

I have, of course, been readinf this thread along with many other ones but not in the position to offer support and advice as I needed to concentrate on myself for a bit. However, I'm hoping to be more involved again now.

Great news Janette, always good to hear about Stable Mabels 😊 As to denosumab I have been having my injections every 6 weeks for the past 18 months or so as it fits in with my visit is to hospital for Herceptin and Pertuzamab. I have felt no changes in aches etc and from the recent CT bones are still stable so it's still doing its job. I don't know of anyone having it less than that but maybe because they haven't posted on here? Enjoy your break and birthday.

Sharon, so glad you are now being looked after so well at the hospice. I hope they get your meds sorted and whatever else is needed to be done to get your strength up and back on your feet again to continue treatment. Sounds like a very welcoming place to be which is not surprising considering what everyone on this forum has said over the years about their own hospices. Put your feet up and get ready for Strictly tonight πŸ˜ŠπŸ’ƒπŸ»

Hi to everyone else, sorry if I've missed off any of your news or results and hoping that all treatments are going well.

Take care

Nicky x

Lynnq
Member

Re: Bone mets - please join in

DELETED......sorry just realised I responded to a very old post, must have pressed one of the old page Nos. by mistake ☺️

 

 

 

 

Marirose
Member

Re: Bone mets - please join in

Hi Sharon

Your hospice sounds great thank goodness you are getting some good care which will help to bring you back to your old self

 

Love and (((hugs)))  xxx

bonariensis
Member

Re: Bone mets - please join in

Hi Sharon Glad that you are getting such good care. You know now it's there for you when you need it. Relax and build up your strength. Hugs B xx

HelenAquarius
Member

Re: Bone mets - please join in

Sharon, so pleased you've got some good quality care, it must make you feel better if you are feeling happier and cared for. It's been a tough, tough few months for you.. I'm sure this will give you a chance to recuperate and gain strength, thinking of you often my old Erib buddy.

lots of love

Helen xxxxx

funnyface
Community Champion

Re: Bone mets - please join in

Sharon, I'm pleased to hear you are getting such great individual treatment. How wonderful is that a Jacuzzi soak and a massage. Sounds like spa treatment. Tell them you want a mani/pedi too.When your family as k s if you need anything make them get you a nice plush robe and slippers too! Then go for some chocolates, fresh flowers, etc. Hugs, FF

Carolyn52
Member

Re: Bone mets - please join in

Sharon
Glad u have settled in and it sounds like a five star hotel !!
Keep in touch with us as we are all here for you ..
Carolyn xx🌹🌷🌸🌻
rosie53
Member

Re: Bone mets - please join in

Hi Sharon, lovely to hear you have settled in nicely and being looked after so well. Just relax and build your strength up it sounds like a lovely place!

Hugs Janette xxxx 

JulieD
Community Champion

Re: Bone mets - please join in

Sharon so good to hear from you and I'm pleased to hear that the hospice is looking after you well, so much better to have one to one care and to be able to feel confident there's someone there for you at all hours.Hope they get you sorted quickly, keep in touch xx

 

scratch
Member

Re: Bone mets - please join in

Hi all yes getting pain meds sorted out..the room is lovely ensuite.tv..with nurses on hand at all times...i had a jacuzzi bath today.and am having massage tomorrow.food is nice ...family all been up ....the nurses are not nhs they work for the charity that runs hospice.and it really shows proper one to one and time for you..much much nicer than hospital.xx❀ the only thing theyv tested so far is urine.so no veiny stuff*β™‘*sharonx
Carolyn52
Member

Re: Bone mets - please join in

Interested to read on another website ..denosumab. .." a targeted cancer treatment for secondary bone mets".
Up to now I thought it just bone juice for oestaeprosis and old people !!
Hmm ..it's obviously very important.
JulieD
Community Champion

Re: Bone mets - please join in

If your Onc is going by guidelines and not just their own preference I  guess it's ok, though like you I think I'd feel a little unsure, but I  suppose we don't like change when things are working. At least they are willing to go back to 4 weekly if this new regime doesn't suit you. Hope you are feeling a little happier now you've had claeification. Now go and enjoy your break and birthday! xx

 

rosie53
Member

Re: Bone mets - please join in

Well onc has emailed my bcn back and she has said that current guidance says start at every 4 wks then to 8 weekly then every 3 months. So I'm going to go with that and see how it go, bcn said if i have problems with pain to just contact her and they will change it back to 4 weekly, suppose they can't say fairer than that. 

Hugs Janette xxxx 

rosie53
Member

Re: Bone mets - please join in

Will do Carolyn, just been checking out the weather and it's meant to be cold, love it up there when it's nice and crispy cold, love to get my big coat on and and big wooley hat with a few alcohol pit stops.....to keep warm obviously! πŸ˜†πŸ˜†
Hugs Janette xxx
Carolyn52
Member

Re: Bone mets - please join in

Jeanette
I'm glad u have sorted it all out as it was bothering you ...six weekly will b fine ..although I expect it will be an extra trip to hospital ..there has been talk of getting gp or nurses at surgery taking it on but here in Exeter they prefer to do it from the chemo ward still.
Now ..missy stable mabel enjoy your birthday and break away and forget all this for a few days.
Xxxx
rosie53
Member

Re: Bone mets - please join in

Morning ladies, well I have just spoken to my bcn about the denosumab, told her I am not comfortable going to every 8 week but I said I will compromise and try 6 weeks so she is going to email my onc and ask if this would be ok with her. Just thinking about the winter months and how our bones tend to ache more in the cold weather! 

Hugs Janette xxxx 

Moijan
Member

Re: Bone mets - please join in

Yes Juliexx

i was given one dose when I began on Eribulin, but felt less well and decided to stay on zometa so as to know what was happening, eg where the s/e were coming from!

JulieD
Community Champion

Re: Bone mets - please join in

Like you Moijan I  chose to stick with zometa, it's kept me stable for 6 years so why messs with it?!

It doews seem Denosumab doses differ but you need to feel happy yourself Janette that what you are getting is rigt for you

Moijan
Member

Re: Bone mets - please join in

Janette, Denusomab comes in two forms, one can be gven every six months. At my hospital, some ladies have said they get it 6 monthly. i was offered it 6 weekly, but I think you can choose, I guess 6 weekly might be the cancer treatment dose, not too sure as im not on it. Here is a link that I found on the web

 

i chose to stay on Zometa as it is the 'devil you know' for me and im ferling ok on it!

 

https://www.rnoh.nhs.uk/sites/default/files/shared_care_guideline_for_the_use_of_denosumab.pdf

 

Hope it is helpful

 

Moijanxx

 

 

funnyface
Community Champion

Re: Bone mets - please join in

I have not had "bone juice" but my Onc and I discussed it. She said it would be given every month for two years, then every 8 weeks. We decided against it for now.

Carolyn52
Member

Re: Bone mets - please join in

Jeanette
My friend in Australia has hers every eight weeks and its standard there apparently.
It's what you feel is best for you that counts though. I'm sure if you want it to be four weekly you can do what marirose suggests !!
I asked for mine to be six weekly as I just felt overloaded with it and the extra bone pain.
Carolyn xxx
JulieD
Community Champion

Re: Bone mets - please join in

oh Janette, if it is making you that worried I  think you should tell your BCN. I  know that different hospitals have different regimes, some 4 some 6 some longer, I  think I  heard somewhere that some women only have it 4 times a year but can't remember where I  heard that. Anyway, for your own peace of mind you need to let them know how unsettling and scary you find the prospect of 8 weeks - good luck xx

 

rosie53
Member

Re: Bone mets - please join in

Okay ladies I'm getting myself in the bit of a tiswas about my denosumab being moved to every  8 week! The most of I've read about is 6 weeks?? Thinking of ringing bcn and seeing if we could go fo the 6 instead of 8.

Janette xxxx 

JulieD
Community Champion

Re: Bone mets - please join in

Janette, great news! Lovely hearing about stable Mabels. Choc cake sounds like a good celebration to me! x

 

Bernie, I  empathise, I  have a port which in theory could be used for contrast but apparently the radiogrphers aren't trained to use them! so I  still have to endure hunt the vein and it's horrible. If the other hospital is better I'd ask to be seen there if I  were you. I  always try to rearrange my appts if they make appts for 'the wrong one'. Great news that it's not in organs! Now to keep those bone mets stable and join the stable Mabel club x

Marirose
Member

Re: Bone mets - please join in

Brilliant news Janette

Just what you want to hear go and celebrate with something nice.As far as Denosumab when I was on Cape they changed it to 6 weeks but as soon as I was on Taxol they wanted me back on 4 weeks as they prefered it to be 4 weeks so maybe ask them to put you back to 4 you can tell a fib and say your bones ached.

Anyway well done Mable Love and ((((hugs))))  xxx

Carolyn52
Member

Re: Bone mets - please join in

Jeanette
Yummy ..sounds nice. hubs just popped out for take away Chinese now as can't be bothered to rummage in freezer again.
I had a large fresh cream Choux bun earlier ...I see there is some cream down my jumper ( which I'm saving for later ..haha)
Xxxx
rosie53
Member

Re: Bone mets - please join in

Well Carolyn you'll be pleased to know that I have celebrated my news with a big fat piece of chocolate cake! It was scummy πŸ˜†I've enjoyed a lazy afternoon on the couch watching Dark Angel which is recorded Monday, would definitely recommend it a really good watch and a true story! 

Hugs to all Janette xxxxxxx 

funnyface
Community Champion

Re: Bone mets - please join in

Bernie, I do think that it is good to have no organ involvement, but I think it's aggressiveness is important too.

funnyface
Community Champion

Re: Bone mets - please join in

Carolyn, You are correct no contrast here. When I was in the hospital they insisted. A pulmonologist told me for what my oncs are watching that I do not need it and not to risk it. They are watching my lungs and one met in spine. Every time you put an allergen in your body you risk a worse reaction. FF

Moijan
Member

Re: Bone mets - please join in

Hi Bernie,

 

what wonderful news! 

 

Love, MoijanπŸ’œπŸ’šπŸ’œ

Bernie610
Member

Re: Bone mets - please join in

Thanks Janette, yes the best I can hope is they stay stable there x
rosie53
Member

Re: Bone mets - please join in

Bernie, that's good news, the little blitters are best contained in the bones!
Hugs Janette xx
Bernie610
Member

Re: Bone mets - please join in

Had a call with yesterday's scan results. It isn't in my organs, which is something positive I suppose xx
Bernie610
Member

Re: Bone mets - please join in

Thanks Moijan, that's a good idea x
Moijan
Member

Re: Bone mets - please join in

Hi Sharon,

 

just checking in on you. Hope you are finding the hospice a blessing after the hospital. I too have had friends who use the hospice as a booster then go back home...dont let the name 'Hospice' bring you down, they are changed places these days.   I went to deliver a couple of cheques to the Crawley one and had a lovely tour. They say they rarely keep people in long term..its more a revolving door and of course some people have 'hospice at home'. Team calling at home. Do have a good rest and come home again refreshedxx

 

Love and hugs

 

MoijanπŸ’šπŸ’œπŸ’š xxx

Moijan
Member

Re: Bone mets - please join in

Hi Bernie,

 

i am on the same page as you with  cannulas and 'scanulas'

i usually buy a heat pad from Boots and wrap it rou d my arm prior to getting there...it works a treat, but best to put it ove a jumper arm or something as it can burn the skin if its next to it.

 

love and hugs, Moijanxx

Bernie610
Member

Re: Bone mets - please join in

Thanks Carolyn xx
Carolyn52
Member

Re: Bone mets - please join in

Hiya Bernie
I sure read here on the threads ( from funny face) that as she is allergic to contrast never has it and it doesn't make much difference ??
I hate it as it gives me a headache for two days !!
Poor veins ..they are expected to keep being punctured so often and perform!
Carolyn xxc
Bernie610
Member

Re: Bone mets - please join in

Thanks for all the advice re my massage question. I went ahead and it was relaxing but painful at times which was a worry. I had my staging CT scan yesterday, became very frustrated with them as they could not insert the cannula. This is always a problem but some try harder than others and this is twice that this particular hospital has given up. This resulted in having the scan without contrast again, I am being clear now that I want my scans at the bigger hospital with a consultant able to insert the cannula, they are a lot more persistent there and helpful x
Carolyn52
Member

Re: Bone mets - please join in

Sharon.
Hope u are settled into the hospice and have your tablet/ phone with you and can keep in touch with us all here ...
Take any treats offered ..massage, reikki , etc and relax in safe hands .
Carolyn xxx
Bernie610
Member

Re: Bone mets - please join in

I know I have only just joined this 'club' but Sharon like everyone else I am sending you strength and love and hope that the hospice helps with pain management xxx