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Bone mets - please join in

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*♡*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! 😆😆
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 😆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, Moijan💜💚💜

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

 

Moijan💚💜💚 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
Carolyn52
Member

Re: Bone mets - please join in

Jultz
All the best for your scan and results ..look forward to you being a stable Mabel too.
Then enjoy xmas ..I've been Xmas shopping in town today so just opening a nice bag of chocolate buttons ..family size of course ..anything smaller would be a insult to Cadburys!!
Hugs xxxc
Carolyn52
Member

Re: Bone mets - please join in

Whoop whoop ..stable Mabel again.
It's a better idea having less denosumab I have mine 6 weekly but with a view to going back to 8/12 weeks later. they say that the first six are the most important and then it's a maintenance dose really.
I still get bone pain for ten days after mine but can put up with it as I'm know I have over four weeks pain free!!
I think u should embrace less bone juice ..some thing less invading the body !
Bet chocolate and wine will b involved later today too.
Hugs xxx
funnyface
Community Champion

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Janette, I can see your glowing face all the way across the big pond!! Now you can plan lots of holiday fun!! FF

julzd
Member

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Great news Janette I get my scan today at 515 so I'm starting to stress about the veins now. Have a good night you can now relax love Julie x x
rosie53
Member

Re: Bone mets - please join in

Hi, Stable Mable checking in! 😆😆😆 finally got home from appt, scan fine "stable", markers 25.  I asked if my mets were sclerotic or lytic and she said they are sclerotic, she asked why I was asking and I said that there had been a discussion on the forum about it, she did say though that it doesn't really make any difference which they are??

Now then, I have one slight worry, she said she wants to change my denosumab to every 8 weeks instead of 4 weekly as I am ok with pain at the moment, does anyone else have them this far apart?? I'm just a bit scared of my pain increasing again however she did say that if that happens she would swap back to 4 weekly again. 

Hugs Janette xxxx 

rosie53
Member

Re: Bone mets - please join in

Yes got hubby by my side! Still waiting, my appt was for 10.15, the waiting is the worst part isn't it!
Janette xxx
redridinghood
Member

Re: Bone mets - please join in

Janette, Hope your wait isn't too long! I find waiting rooms difficult.......can't concentrate. Is there someone with you? Take care & let us know,

 

mo          x

Marirose
Member

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Sending you good cyber vibes Janette (((hugs)))  xxx

rosie53
Member

Re: Bone mets - please join in

Morning ladies, just sat in clinic waiting to see onc for CT results 😯😯hopefully it's not a long wait!
Hope everyone is keeping okay.
Hugs Janette xxx
bonariensis
Member

Re: Bone mets - please join in

Hi Sharon I'm sorry that things are not going so well right now. The hospice will give you the best care whenever you need it and you won't have the stress of constantly having to chase after it. Hope you get sorted and back home soon. Keep in touch, lots of gentle hugs  B xxx

redridinghood
Member

Re: Bone mets - please join in

Sharon, Sending my love too, along with the others, and to say I agree with them that hospices today have such a wide ranging role. They can get people sorted out, and have much more experience and knowledge than docs and hospitals. Hence your referral. When you get a chance let us know what you're up to! We all drop in here regularly and will be wondering how you are.

 

mo                xxxxxxxxx

funnyface
Community Champion

Re: Bone mets - please join in

Sharon, I'm not sure how hospice works there, but I know here you can go to a facility or have it at home. I did hear years ago from one lady over there that hospice had a lot of nice programs like art classes. I hope hospice can get you sorted and maybe you can enjoy some of their complimentary services. Tons of hugs! FF

julzd
Member

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Sharon thinking of you hope you get sorted and back home soon sending positive vibes and hugs julie x x x
JulieD
Community Champion

Re: Bone mets - please join in

Sharon, I  just wanted to add my love to the others. Sorry you are struggling and you are probably a little worried about the hospice but I  know lots of women who have gone in for a few days and the hospice has got them back on track, meds sorted and back home. Sending you positive energy and strength xx

 

racer
Member

Re: Bone mets - please join in

Hi Sharon sending hugs and positive thoughts xxx

rosie53
Member

Re: Bone mets - please join in

Hi Sharon, thank you for keeping us dated. Thinking of you and holding your hand.
Sending you a huge cyber hug (((((())))))
Janette xxxxxx