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Bone mets - please join in

Carolyn52
Member

Re: Bone mets - please join in

Yvonne

You are very welcome ..here .please post as we like to hear everyone's story.

Well hello ladies
Hope everyone coped with the weekend ..weather was gorgeous yesterday here ..I was out and about without a coat too.
Loved all the tv on too ...jungle was a real treat last night .
My son bought me the buster toy from the John Lewis advert too ....
Carolyn xxxxx
Carolyn52
Member

Re: Bone mets - please join in

Hello dawn
Welcome back ..we have missed you as you are an inspiration to us after all the time you have been living with cancer.
I do hope that oncologist digs in his magic bag and finds something for you to keep the little uggers under control again.
Carolyn xxx
dawnhc
Member

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Hi all, i feel I have to apologise for not posting for ages. The fatigue problem has really hit me and I probably spend more hours asleep than awake these days. Just now the problems I have been having with pain are giving me a break and the medication is keeping it well under control.BUT - and it is a big but - I have been on Kadcyla for 2 years now, after being on herceptin for 10 years, but platelets have really been objecting. After changing to 6-weekly which worked well for a while now my platelets aren't recovering and are stuck at around 75 after ann 8 week break. It came as a bit of a blow when I was told that after 8 weeks off the drug it becomes 'out of licence' and you are not allowed to have it again! Add to that NICE doesn't allow you back on herceptin either. Onc thinks cancer has infiltrated bone marrow - if it is just the kadcyla causing platelet problems they will recover in time. On friday I had an echocardiogram (thank goodness Marsden are switching from MUGA scans to these ECGs), and a full body MRI and on Tuesday I will get the results. I just don't know where I go from here. Onc talked of rechallenging the cancer with one of the chemos I had 14 years ago as I had good results on it. I'm afraid I was norty enough to disagree with him. At that time I had a lot of lymph node action around my collarbone, neck and jawline and the chemo (navelbine) did work on them but as soon as the course finished they started to grow  again. It was only when I was then started on herceptin (a very new drug to us in the UK) that my cancer was brought under contorol . So for me to be told there are no drugs that involve herceptin available to me - well I'm sure I dont have to tell any of you how that feels. I have heard since that there is a trial going on (phase 1) SYD985 and this, like Kadcyla, is a combination of herceptin/other drug .I know that some of the members of the facebook Chat Girls group know more about this/are on it. If any of you know more or are taking part I would be interested to hear more.

 

Dawn

xx

Yvonne59
Member

Re: Bone mets - please join in

Hi Carolyn, yes I  guess I am a veteran!!!

It's had it's up and downs. 

I shall open up more on my next post.

Just wanted to say thank you for the welcome 

Yvonne 😃

Carolyn52
Member

Re: Bone mets - please join in

Hello Yvonne
Thank you for the info 're heating allowance ..a lot of ladies here do worry about the bills this time of the year and there is nothing worse than being cold and scared to put the heating on.
Welcome ..so you are a veteran bone metser then for three years ...
Carolyn xxxx
Yvonne59
Member

Re: Bone mets - please join in

Hello everyone. I've been reading threads regarding heating allowance. I don't receive these, but as I am now on a low income I receive help through Macmillan cancer care. They have a scheme which offests the charges normally paid by your energy company to an amazing £20 per month, with no limitations on how much energy is used. I hope this service is available to at least some of you and please spread the word. Best wishes, smiles and good cheer from Yvonne  (secondary breastfeeding cancer in the bones since 2013)

Carolyn52
Member

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FF ...since chemo twelve years ago ..I suffer terrible heartburn / indigestion too and have to be careful what I eat and throw in old teeth as well ..the safest thing for me is baby food !!!
I don't eat after 6pm as I'm awake all night popping Rennie tablets if I do!!
Carolyn xxxx
Carolyn52
Member

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Hiya Jeanette
Ed balls was hilarious and its good to have a bit of comedy !! thought Danny Mac was best.
Looking forward to jungle too tomorrow . To b honest ..hands up but been watching x factor too !!
Carolyn xxc
racer
Member

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Thank you everyone.funny face that chocolate brownie sounded lovely . Think I will suggest it to my daughter .
. Well what a day I have been admitted on oncology and having two units of blood. I am anaemic again and platelets were 48. They think I have a water infection too.
Could not get tv to work 4 of us had a go. Hubby comes in and switches it on . Typical! Managed to watch Strictly. They have all improved even Ed Balls!
Just sorting visiting who can come when! Trying not to worry and stay positive but difficult xx

rosie53
Member

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Oh Carolyn, did you watch Strictly tonight? Ed Balls omg hilarious! If he doesn't get voted off tomorrow night it's a fix! I thought Judge Rinder, Louise and Danny were really good! Hey can't wait for the Jungle tomorrow night!!!!
Janette xxx
funnyface
Community Champion

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Carolyn, I want mine back too!!!! I understand the heart burn, on prescription prilosec. When I'm on infusion chemo they give me an IV form of pepcid before the chemo. I was amazed at how much pain I was in from the heart burn.The first time I got it, I had just left the cancer center and had to pull off the road. I called Ross bc I thought I was having a heart attack. I managed to get my self home and realized what it was. The next time I went back to onc, he said why didn't you come back here? We woukd have given you the pepcid IV. I asked him how was I to know there was such a thing as IV pepcid? 

Carolyn52
Member

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Oh FF ..I would have been in chocolate heaven in carolyns world but I have to eat my choc before 6pm these days or I'm as high as a kite all night with indigestion as well.....I want my old life back !!
Carolyn xxxx
funnyface
Community Champion

Re: Bone mets - please join in

Carolyn, I was thinking of you last night and Thursday night! Thursday night hubby made a pan of brownies. I fell asleep in my chair. He woke me up and handed me my dessert surprise. A big chunk of brownie with mint chocolate chip ice cream and chocolate fudge topping! Bye, bye diet!! Last night a friend invited us to a gala she planned for a company she volunteers with. The company collects left over food from restaurants and takes it to soup kitchens to feed the hungry. This gala was at a great Italian restaurant. Food was fabulous! Dessert was either cheese cake or  this chocolate layer cake! It was 5 layers of chocolate cake with a chocolate filling and chocolate icing all over it! Goodbye diet again!!! We were invited to go for free too! They had a silent auction so I bought a necklace and bracelet. I'm sure you would have loved all that chocolate!

funnyface
Community Champion

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Truffle_Shuff, They should have explained to you what these areas of high density could mean and what the POA for it is. They left you in the land of confusion, NOT NICE!! GRRRRRRRR!!

funnyface
Community Champion

Re: Bone mets - please join in

Racer, Hope you can get a good giggle out of hubby 's melt down! I always felt bad for my kids if hubby was having a melt down. I wanted to rescue them. If it was me having the melt down, I didn't feel bad!  

If you need blood I've always heard that it is instant relief.Hope you feel better quick!

funnyface
Community Champion

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Janette, An outing at Christmas markets sounds like major damage on the wallet!! Enjoy! According to a friend of mine it's not just your birthday day, birthday weekend or birthday week. It's you birthday month!!! J love how she thinks!!! My hubby received this silly stuffed grey hamster for his 50th birthday. It is holding a walker like an old person. It sings a song about birthdays and dances with the walker to the wild song. I play it every morning when we get up and every night when we are going to bed for my birthday month!! He just shakes his head at me! It will be 9 years old in Jan. and going on the original batteries. Happy Birthday!!!

 

rosie53
Member

Re: Bone mets - please join in

Hi ladies, sorry been quiet this week but it's been a crazy week, I've been milking my birthday all week 😆😆had such a lovely week and it's not over yet, my daughter is taking me to the Christmas markets on Monday, and out for lunch feel so lucky I have lovely family and friends!
Racer and Truffles, sorry your having a rubbish time at the moment, stay strong ladies! I'm sure the "weekend medication" of chocolate, wine and Strictly /X Factor will help!
Hugs Janette xxxx
truffle_shuff
Member

Re: Bone mets - please join in

Thanks Ladies,  

 

calmed down now, no more energy left for worry . I know  I will get best treatment ,and it is very small volume ,so fingers crossed, Enjoy all the shoppin , eating chocs and Telly . Im snugged in  and chocs and Prossecco will be out later .

 

 Thank you for support everyone xx

Carolyn52
Member

Re: Bone mets - please join in

Hello Truffle Shuffle 

 

Thats why we all get anxious over scan results but try not to panic yet and if there is any further problems trust your oncologist to prescribe the very best treatment plan for you. xxx

 

Well just been xmas shopping online and doing ok with things now but I just cant help sneaking a few things in for me as well so the shopping costs twice as much !! Im also munching on a  family bag of chocolate raisons too ( well the raisons are one or two of my five a day )

 

A glass of vino might be involved too when watching strictly and X factor tonight. Does anyone else really love the new John Lewis ad like I do ??  My sons boxer looks just like Buster and no doubt he will be getting a trampoline from Santa to compliment his paddling pool/ ball  pool as hes a very pampered pooch !! Ha ha. 

 

Carolyn xxxx

JulieD
Community Champion

Re: Bone mets - please join in

Lol racer, let hubby have melt down, you just concentrate on getting to feel better. I'll be watching Strictly, but have no chocs to munch unlike Carolyn Smiley Frustrated

 

Oh Truffle stuff, I  hate it when Oncs leave us up in the air. I  hope the MRI  comes through quickly and you can get proper information. I haven't got liver involvement, just bones, so can't help on that front. I  do know though that there can be other reasons besides cancer that your liver might look different, fatty liver being one for example.The MRI  should give a much clearer picture. Let us know when you hear anything. I  know it's hard to try to put it to the back of your mind but try to do nice things to distract your brain from dwelling, worrying is exhausting and won't change anything so try to hope for the best whilst keeping a little back  to help you prepare if results are not what we want. We are here for you, sending a gentle hug xx

racer
Member

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Thanks Carolyn and Julie . In best place . Hubby is having a melt down with kids lol ! Think it will be Strictly but Ido like HOneyG xx

Oh truffle_shuff sending hugs and positive thoughts . Hope you are sorted quickly xxx

truffle_shuff
Member

Re: Bone mets - please join in

 Hi, 

 

Help please 

 

  Had scan results yesterday , and bone treatments seem to be working, all stable , and alkaline phos down dramatically....... then the However came , we saw a few irragularites on liver , Ahhhhhhh, they think secondaries ,  said they were slow growing , ? how can they tell from the scan???? . Adn if yes they will still continue with my bone treatment anyway ???? and out they walkedd,  Had meltdown at home , now waiting MRI liver scan . Can anyone give me any  their experiences with this area . 

Scan read  "ares of  high density on liver" ? 

 

 Keep well , keep warm xx

JulieD
Community Champion

Re: Bone mets - please join in

Oh Racer I'm sorry to hear that. Hope they deal with you quickly, get results fast tracked and enable you to get some answers and know how they will tret you if it is an infection. If you need a transfusion itmight take few hours but I'm told iy makes you feel better quite quickly. Fingers crossed it's easily dealt with and you are back home feeling brightr shortly xx

Carolyn52
Member

Re: Bone mets - please join in

Hello racer
Not the best way to spend a Saturday but at least you are being looked after and hopefully sorted out so u can enjoy strictly / x factor tonight maybe ??
Sending hugs xxx
racer
Member

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Lying on bed in Oncology to see if I have infection or need blood transfusion xxx

Carolyn52
Member

Re: Bone mets - please join in

Good morning ladies
Assume the threads are quiet as there was a bit of a blimp getting on this website yesterday ...it seems ok today so fingers crossed.
Hope everyone is ok and looking forward to their weekend with something a bit special ..bar of choc, McDonalds or a glass of wine will probably tick the box .
Hugs Carolyn xxxx
racer
Member

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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

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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

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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

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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
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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

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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

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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

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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

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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

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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

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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

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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

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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

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

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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
JulieD
Community Champion

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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.

Carolyn52
Member

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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
Babsy
Member

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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. 

Bernie610
Member

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Thank you Janette and B xxx