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Bone mets - please join in

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Re: Bone mets - please join in

I've just rung up my energy supplier you also need to be receiving one of a choice of benefits as well as DLA so I don't qualify as I have a teacher's pension ☹️


@Carolyn52 wrote:
Hello Jeanette
I looked at the link B sent it would seem that this heating discount is automatic if you receive pension credit ? I'm going to look a bit more as I don't get pension credits ..it's always a minefield these things.
Glad u had a good weekend ..I had a
Glass of wine too last night ..got a stinking headache this morning !
Now understand why old people go away to the sunshine for winter months . Sure this colder weather is making me ache more !!!
Carolyn xxc

 

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Hello JulieD, I'm with you - I like to see all scan and appointment reports. I want to know what is going on - I have found that you learn much more, even from the reports your Onc or Onc Registrar puts in their report than they tell you at the actual appointment! I am due a CT scan on Friday (day after my Onc appointment, unfortunately, so will have to wait at least 3 weeks for the results, if not 6! (I don't usually have an Onc appointment every visit - usually they alternate three weekly with just a Chemo Ward visit).

 

Hugs. Barton.x

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Hello Jeanette
I looked at the link B sent it would seem that this heating discount is automatic if you receive pension credit ? I'm going to look a bit more as I don't get pension credits ..it's always a minefield these things.
Glad u had a good weekend ..I had a
Glass of wine too last night ..got a stinking headache this morning !
Now understand why old people go away to the sunshine for winter months . Sure this colder weather is making me ache more !!!
Carolyn xxc
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Morning ladies, lovely crisp day here today.
Lake District was lovely as usual, drank far too much preseco though!
Thanks for the info regarding help with fuel bills, I am definitely going to ring my supplier this week, having cut my hours at work and being at home more im always worried about putting the heating on!
Hugs Janette xxx
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I  currently have scans every 6 months, at the beginning it was every 3 months but as I've been stable was moved to 6. My Onc has actually been trying to tak me into yearly scans but I'm not comfortable with that.

 

You need to check with your energy supplier about the Warm Home Discount - not all of them are in the scheme, mine isn't Smiley Sad

 

I  always get my Onc to send me a printout of the CT report, mind you I  have to chase them sometimes, I  like to see what the reports say and ask questions about anything I'm not sure about or that seems new/different. It doesn't suit everyone but I like having information.Good luck Tuesday Bernie.

 

Avrelia, good to hear chemo has been manageable, hope you get to have a good break.

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Hello babsy
Welcome back as we haven't heard from you in a while.
It sounds like you have been very proactive with info and details from oncologist.
Please let us know how you get on with the nutritionist on Tuesday .
I remember your healthy eating plan from May and as much as I knew it made sense ..just couldn't give up my choc and McDonalds !!!!
Carolyn xxc
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Hi everyone 

At my last onc appt I asked her for a print out of my bone scans which she duly printed off. For me, it was about trying to see what she was talking about. So even though I had progression after my spectacular regression I could see that the cancer still wasn't as bad as at the beginning and that gave me hope. I alternate a bone and CT scan every six months but I am going to ask for MRI s to replace CT scans. The radiologist explained that it shows soft tissue/ organ invasion just in a different way. This  has now been backed up after my visit to A & E with a suspected spinal cord compression. The doctor ordered an X-ray but the radiologist told me that with each CT scan you receive the equivalent if 3 years background radiation. No wonder I'm glowing !!!! I just figure I need to help my body not compromise it further. She refused to do an X-ray. 

I'm going to see a qualified nutritionist/ naturopath on Tuesday so I'll let you know how that goes. Also booked into see hospice counsellor just cos I feel that I need to ha ha. 

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Thank you Janette and B xxx
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HI Bernie. About scans. Everyone will be different depending on what's wrong with them and which onc is treating them. Me for example, I have bone scans every year and MRI on head every 6 months but it could all change at any time. B xx

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Thanks Bona you got in before me xxx

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Re: Bone mets - please join in

 Hello ladies don't forget to apply for your Warm Home Discount from your fuel supplier. If you are claiming DLA  you are entitled to £140 just contact them and ask about it.

 

Nicky I am so sorry to hear you have had progression I know how it feels I had progression to my Lungs and Liver back in September it sounds as though your medical team are on top of the situation let us know how you go on Heart

 

I have CT scans every 3 months and I have had recent MRI scan for the spine due to suspicion of spine compression Bone scans seem to be a long time between each other considering I have multiple bone mets I think I will question the frequency of them.

 

I have wrote this post twice the other one got lost lets hope this one works.

 

Love and (((hugs)))  xxx

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Warm Home Discount is a ten year, government-led scheme that was introduced in 2011. It involves the government and electricity suppliers working together to offer extra support to people struggling to afford their energy

Warm Home Discount Scheme - GOV.UK

https://www.gov.uk/the-warm-home-discount-scheme/what-youll-get
 
8 Sep 2016 - For winter 2016 to 2017, you could get £140 off your electricity bill through the Warm Home Discount Scheme. The money isn't paid to you - it's a one-off discount on your electricity bill between October and April. The discount won't affect your Cold Weather Payment or Winter Fuel Payment

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Re: Bone mets - please join in

Marirose
I've never heard of warm home discount . we get a winter fuel allowance ? Is it the same thing ?
Could do with an extra bit as our heating is always on lately.
Carolyn xxx
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Maybe on your next oncologist visit you should ask for all that info ..if you really need to know. You see I'm a wuss and don't want to ..." stable and bones repairing" was my last one four months ago and I'm happy to take that and run !!!
Sometimes ..too much info is dangerous and maybe we are just drip fed bits unless we ask .
Carolyn xxx
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Hi ladies don't forget to apply for your Warm Home Discount from your fuel supplier £140 this applies to anyone who is disabled and on DLA.

 

Hello Nicky sorry you have had progression I know how you feel I had progression by getting it in my Liver and Lungs.It sounds as though your medical team have got another treatment planned for you let us know how you go on and what treatment you will be on.

 

Hello Bernie I have CT scans every three months but sometimes if it looks as though I have spine compression a MRI on my spine. Bone scans are not very often and I must ask why as I have multiple bone mets.

 

Hello to FF I have just clicked back and you have been posting I will read it after this.

 

Love and (((hugs)))  xxx

 

 

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Just wondering something. We go for all these scans and mine get compared to the previous one, so I think! Over the tears I was always being told they were stable, except when I had some progression. What I want t o know is if anyone has ever had one compared to their very first one with mets. I've been thinking about asking for that. For some crazy reason I want to know the overall change in 11 years. I have never been told that I have any new tumors. Somewhere along this journey I had developed one bone met which no one had told me about until my old oncologist left. New onc looked it up and said its been there many years.Old Inc told me back in 2012 that I had a tumor pressing on the artery to my heart, and I would probably need that artery stented soon. Well, that was 4 years ago and I've never heard another word about that tumor and that was the first and only time I heard about it. All I'm ever told about us my lungs. Also it was in almost every lymph node in my chest and never  hear about them either. I also haven't asked and just assume all that has been fine. I all of a sudden feel this need to know more. Mostly I want to know show much worse I am than in the beginning. FF

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Hi Bernie, I have a CT every 3 month's, initially I had bone scans every 6 months but not anymore.
Janette x
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Hello ladies, I have my oncology appointment on Tuesday, I have a list of questions as we all do! But wondered if there are any further suggestions from you all for me to ask? How often do you all have scans? xx
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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

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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
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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. 

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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

 

Moijanx💚💚💙💙💚💚

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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

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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

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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

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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

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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
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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 😊💃🏻

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

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

 

 

 

 

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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

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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

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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

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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

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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🌹🌷🌸🌻
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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 

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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

 

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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
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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.
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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

 

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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 

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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
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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
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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 

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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!

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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

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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

 

 

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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.

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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
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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

 

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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