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Bone mets - please join in

racer
Member

Re: Bone mets - please join in

Aah thanks for the tips .funnyface . I have three kids ..my Daughter is 16, and two sons -13 and 8 . I am ssh 48 and was diagnosed in 2010 .
I know what you mean I have to scroll through as my memory is not always good especially with names . I always call the kids wrong names and then just say you lol .
Sometimes forget to check the forum as I get busy with family . I am sure everyone is the same.
I don't like to bother Oncology as I know they are busy . My hubby tells me off as he says that is what they are there for.
Supposed to be going to fireworks thing tonight but was hoping it would be postponed with the weather. I would rather stay in and keep warm , watch the apprentice whilst recording paranoid . Always put two things on at the same time.
Keep warm and will keep updated xxxx

funnyface
Community Champion

Re: Bone mets - please join in

Racer, Smart girl calling your onc. I know sometimes we hate to call bc we are afraid of another negative answer. We really do need to call though, so problems can get taken care of quickly. Glad your blood work was good. I have to need a little notebook to keep track of everyone. I can't remember what treatment everyone is on, etc. I have to look back through messages sometimes to find it. Darn chemo brain!! I'm going to ask you what are you taking? Also how old are your children?  BTW besides my jammies I have 2 exercise outfits that are comfy. They aren't yoga pants. They are a very light weight. soft stretchy comfy material with a very soft elastic waist. No pressure from the elastic. My daughter bought them for me. I also like them fir when I go for scans. No metal, so I don't need to change cloths. On days when I didn't feel good, I ate mashed potatoes. My hubby would make them a wee bit to the thin side. I bought a big box of instant to have on hand. I was too tired to make real ones and didn't want to ask hubby to make them every day. I did well with soups too. Take care!

racer
Member

Re: Bone mets - please join in

Thank you everyone. Rang Hospital this morning and went for blood tests . Impressed with the Hospital rang me back and said bloods looked not too bad . But they want me have further blood tests on Friday . See Onc on Monday morning. Trying not to worry and have rested as much as the kids have allowed me . Taken dosage for anti sickness which has helped but still not much appetite. Upsetting Hubby because I was always a big eater. Hoping they will get me stable again.
Hope you are having a good rest and being sorted Sharon x
Funny face Think I will have to invest in some baggy pjs . I had my fleece top in bed which is not me usually fighting with the duvet lol x
Bernie I had radiotherapy on my hip when I was first diagnosed. I could hardly walk . But the rt definitely helped with my mobility. Hope you go on ok xx

Lynnq
Member

Re: Bone mets - please join in

Hello Bernie. On reading your post I just wanted to try and offer you some reassurance regarding the aggressiveness of your cancer. I was diagnosed - from a routine mammogram - in 2012. Within 30 days I had a R Mx and on doing histology they discovered that I also had cancer in my other breast and in the skin just below. I then had scans and was told within 6 weeks that I had spread to my spine and peritoneal area. The spread was obviously there all of the time. I found the fact that it had gone to so many places so quickly very scary and also must mean it was very aggressive, my onc said it was too soon to know.

I was put on letrozole and here I am four years later - have been stable ever since.

Moijan
Member

Re: Bone mets - please join in

Hi Bernie, sorry about the worry. Youve done all the right things and you sound very positive and practical. 

 

Hopefully things will settle down and you can feel more confident about things. I had a big scare inJune, when my markers went up very high, a change of treatment has sent them plummetting down. Letrozole is very effective and hopefully it will work for you.

 

do keep  us posted as we are all here for you, love Moijanxx

Bernie610
Member

Re: Bone mets - please join in

Hello ladies, so sorry to read of your progression Nicky and Racer I hope you feel better soon. Thanks to everyone for all your comments. I thought I would update you re my recent appointments following my shock secondary diagnosis. I have had the CT scan and results I was advised again that my organs look clear. Had my oncology appointment today who advised that the cancer in my hip is not a massive area and thinks the pain I have right at the bottom of my spine may not be related (but I'm glad I told my surgeon about it now as it prompted the bone scan!). I asked how aggressive it is, the reply was that as it has returned quite quickly this could be an indicator that it is more aggressive than they would like but she settled on it being at midpoint. We will only know by comparing the next scans. I also asked about the possibility of the receptor having changed but of course and again this can't be determined until the next scans in 3 months. She spoke of chemo and to be honest I should have asked more about whether I should have this now so I will call her secretary I think to try and arrange an appointment or phone call. Also mentioned the radiotherapy and that there are lots of things we can try if not having a positive response to a treatment. So I am now px Letrozole instead of the Tamoxifen and Denosumab injections and my fingers are crossed 😩. My daughter is coming home from university tonight until Sunday so I will have the dreaded task of telling her my news tomorrow 😥 xxx
Barton
Member

Re: Bone mets - please join in

Hello racer, sorry to read you aren't feeling too good at the moment. Ring your Onc if you don't improve soon (I'm sure everyone else has already told you this!).

 

Good wishes, and I hope you feel better soon.

 

Hugs. Barton.x

Barton
Member

Re: Bone mets - please join in

Hello bonariensis, thanks very much. Probably should have posted in the Scanxiety thread really, but as I'm not actually anxious about the scan itself, I will save my jitters for the results bit!

 

Hugs. Barton.x

LYNDYLOO
Member

Re: Bone mets - please join in

Afternoon  Nicky

 

So sorry  to hear you have slight progression in liver. Hope biopsy  goes well and not to painful for you..

 

Regarding  myself I am still  on the  same treatment  at the moment  but think it might be changing  in the near future.  Had my 3 monthly  scan yesterday  so now it is the waiting  game. Normally takes at least 3 weeks for results.

 

I do read forum most days to see how everyone  is getting  on. Great news to Natalie  to be stable mable. 

 

To everyone  else sending cyber hugs hoping all treatments  is going  well. Linda

funnyface
Community Champion

Re: Bone mets - please join in

Hi Racer, Pamper yourself. Curl up with a blanket, in your favorite comfortable outfit. Mine is a big old over sized men's hoodie pullover grey sweat shirt, over top of a pair of PJ's. I've been known to wake up take a shower and pug fresh jammies on and my hoodie. I live out in the country in the middle of about 15 acres of woods with a long driveway. I can run and throw on jeans quick. Do you think your tummy hurts from SE or nerves? Maybe you picked up a little virus. Hope it's just a quick bug and you feel better soon.FF

Carolyn52
Member

Re: Bone mets - please join in

Hiya racer
Sorry u feeling rubbish today ..think its good days and bad days ..like swings and roundabouts really .
Sure the colder weather causes all us bone metsers more aches and pains too.
Carolyn xxxxx
racer
Member

Re: Bone mets - please join in

Hi everyone hope you all keeping warm. Feel rubbish today feeling nauseous and really tired. Should see Onc on Monday to discuss my results. If I carry on feeling like this think I will ring them . Just start to worry again . Think feet up today xxx

bonariensis
Member

Re: Bone mets - please join in

Hi Barton

Good wishes for your scan on Friday. hope the results come sooner rather than later and lots of hugs for the waiting period, B xx

Barton
Member

Re: Bone mets - please join in

Thanks, Carolyn! Don't mind the scan itself (although not fond of the warm, "have I wet myself?" feeling when they inject the iodine!), as everyone else, I worry about the results appointment. Actually, I may not have to wait as long as I thought, as I have asked for copies of all reports to be sent to me as well. Not sure, though, if they will do that BEFORE you have had your Onc appointment. I'll have to ask on Thursday.

 

Hope everyone else is doing OK (Sharon, hope you are feeling more comfortable and are still being pampered!).

 

Hugs. Barton.x

stresshead
Member

Re: Bone mets - please join in

hi ladies, thought i had posted on hee recently but cant find it...i'm going bonkers!! Apologies if i have posrted somewhere else in error.

janette...fantastic news on being stable!! i have denosumab every 6 weeks but that was to fit around my 3 weekly chemo to save an extra visit. Seem to be ok with that at the moment as last scan showed stable bones.

Sharon, glad to here you are happy at the hsopice and they are doing nice things for you. You really are in the best place and they'll soon have yo up and running.

Bernie, whenever i have a scan i always ask the chemo nurses if they will do it for me as they are the only ones who seem to be able to cope with my non existent collapswd veins...maybe worth an ask??

Fantastic news that no spread to organs..so pleased for you. I have scans at the moment every three months.

Nicky, sorry to hear about slight progression...i think you have done the right thing in having another biopsy...so many times we hear of people having a change in status which otherwise may have not been picked up. glad to know there is also a plan for you in the pipeline.

 

Interesting to pick up on the thread about heating allowance..that is something that has been concerning me...neither of us are working and the heating is now on a lot more than it used to be..i think i'll ring and check though after what Babsy has said it may prove to be a waste of time....will let you know.

Love to all. xx

 

 

Carolyn52
Member

Re: Bone mets - please join in

Hello babsy
I don't qualify either for the allowance.
Barton
All the best for your scan on Friday ..I go 18 weeks now between oncologists appointments but I'm not on chemo so not much to monitor I guess.
Xxx
Babsy
Member

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

 

Barton
Member

Re: Bone mets - please join in

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

Carolyn52
Member

Re: Bone mets - please join in

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
rosie53
Member

Re: Bone mets - please join in

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
JulieD
Community Champion

Re: Bone mets - please join in

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.

Carolyn52
Member

Re: Bone mets - please join in

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
Babsy
Member

Re: Bone mets - please join in

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. 

Bernie610
Member

Re: Bone mets - please join in

Thank you Janette and B xxx
bonariensis
Member

Re: Bone mets - please join in

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

Marirose
Member

Re: Bone mets - please join in

Thanks Bona you got in before me xxx

Marirose
Member

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

bonariensis
Member

Re: Bone mets - please join in

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

Carolyn52
Member

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
Carolyn52
Member

Re: Bone mets - please join in

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
Marirose
Member

Re: Bone mets - please join in

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

 

 

funnyface
Community Champion

Re: Bone mets - please join in

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

rosie53
Member

Re: Bone mets - please join in

Hi Bernie, I have a CT every 3 month's, initially I had bone scans every 6 months but not anymore.
Janette x
Bernie610
Member

Re: Bone mets - please join in

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
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

 

Moijanx💚💚💙💙💚💚

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 😊💃🏻

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🌹🌷🌸🌻