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Bone mets - please join in

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Hi 

 

Jamal is so cute .My love to him.

 

 

I am new to this group.

 

Had bone met from primary invasive ductal cancer diagnosed in 2014. I am on hormone therapy and zoledronic acid  for 9 months. I have a loss of appetite and no taste, Is this normal side effect ? Can anything improve this becuse I am loosing weight.  

 

srilata03

 

 

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Hi Corey   lovely to hear from you again, hope you are OK.  What a lovely little fellow - thank you for sharing. 

Hugs B xx

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Hello all
Nice to see some postings again here on the thread !!!
Corey ..that is really the aagh factor ..I just want to cuddle Jamal ..will think of him when I pass through on my way to bude next time.
Bet u r glad the chemo is over now and you now have some hair growing again. Doesn't it take a long time to grow a fringe though?
Hugs xxxx
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Aaaah
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hi everyone sorry i haven't posted for a long time just been busy with things on the farm and thought perhaps you would like to see this little chap two weeks old now. he is gorgeous,named him jamal. a happy mother day everyone tomrrowxxIMG_1011.JPG

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Hi girls - think everyone's been out enjoying some rays! Beautiful day in Pembrokeshire 😊☀️☀️☀️
Had my 3 zoladex yesterday and feeling a bit sorry for myself (just hate the injection bit 😒) And back a bit sore today but praying for no spasms.
Good luck with results ladies! Think I have mine sometime in April 😲
Pippin - cold beer/cider/glass of wine sound great!!
Xxxxxxx
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Hi Carolyn

Hope your scan results are good, will think about you during the waiting period. I went in early for a bone scan on Thursday. Discovered on Wednesday that i could have had a hospital parking permit for the past year. Must read the small print. Amazing sunshine today, did loads of washing (including my daughter's)

hugs to all B xx

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Hello ladies
Was feeling like Billy no mates here lately ..
Pippin enjoy your beer and maybe a tube of Pringles too ...
FF
Hope your scan results are good ..mine arnt to beginning of April ..squeaky bum time again.
Xxxxx
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Hi Ladies, Yes it's been quiet! It is warm here today, but the sun is hiding! The snow is almost gone. I really wish the warm days would stay. Carolyn hope that cold disappears and you get good scan results. Hoping your appointment is early April to discuss your teeth. Pippin, I don't like beer but a wine sounds good. Waving at you Barton! I have a scan on Tues. results on Thurs.!! FF

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Hi Carolyn and everyone else

No such luck with the bunjee jumping, strictly not allowed to do any sports! Sat at home on pc, my hip even hurts sitting down. Thinking about painkillers or a beer. I think I will go for the beer.

Weird how with stage 4 we seem to break the rules. I would never drink on my own but do so now.

Everyone is kind to me and that somehow sometimes gets my goat then I feel bad about it.

Pippin

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Hello Barton
Yes have a cold but hopefully better by Monday for our coffee meet up.
Had my scan Wednesday ..couldn't believe it ..empty ..straight in and out and home within a hour including travel !! I love the nhs !!
Nanas magic soup lovely but added too much turmeric and it overtook the flavour ..whoops.
Yes ...quiet here ..I give up as I feel I'm only posting to myself ! Everyone must be busy bungee jumping and gardening !!
Hugs xxxx
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Hello Carolyn, sorry to hear you have a cold. How are you feeling today? Better, I hope. The soup sounds nice - haven't seen it though.I didn't realise you had a hospital visit this week - I hope all was well. I expect you told me, but chemo brain (or age!), is definitely kicking in!

 

The round yellow ball in the sky has arrived! And it is so warm here in Devon today - it's been beautiful!

 

It is so quiet on the Forum lately - where is everyone? I only hope it's so quiet because everyone is feeling well, and not the reverse.

 

Hugs to all. Barton.x

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Hello ladies
Well hope some of you have seen that yellow circle in the sky today ..we in Devon are cold and wet so it's about time we saw it.
Well I have another cold ..achoo ..sure I caught it at the hospital on Wednesday !!
Anyway I decided to make "nana soup" from the Tesco ad on tv ..never attempted anything like it before ...it's lovely ..worth all the washing up ...and would u believe it ...I'm being very healthy !! Only one lot of choc in a week and no McDonalds for a month !!
Hugs xxx👍
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Hi girls - sorry but I've been able to sleep through the night so haven't been posting. Plus I've also left all the painkillers (seemed to be on a cloud/fog) and loving my clear head and feel that I can actually recognise the pain as either muscular or not. Fear not, I go around with my little pharmacy in case a spasm/major pain hits. 😉
I've gone back to work this week - just for mornings... need to try to find some routine and think it helps everyone...
Much love and you are all in my prayers
Xxxxx
😘🌷🌷🌷🌷☀️☀️☀️
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Hello pippin
I have no experience of a hip replacement but had a femur nail put in to support my rotten hip !!
I think hip replacement is quite a quick recovery ..in hospital they get u walking the next day after op !! I think its about six weeks of physio and walking on crutches ..the hip has to be quite good for the replacement hip ..mine was too far gone !!
I saw people in their 80s having the op so if u are young ..it will be a quicker recovery .
Like u I prefer not to take pain killers if I can manage without .
Xxx
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Hi all

Bit quiet here.

I understand the reluctance to start painkillers. My hip doesn't bother me much until I put any weight on it. I guess I probably would walk better if I were doped up but so far I have valued a clear head over a good gait. It's over a month now since rads and my mobility is improving now.

Does anyone have any experience of hip replacement? Like I wondered how long before you get home, how long before walking unaided, how long before driving and generally was it worth it?

Best wishes

Pippin

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Thank you for your quick reply Nicky, definitely going to ask to be kept on with zoladex not comfortable with stopping it this year.
Also going to question my denosumab with her too, can't have anymore rads in my hip because I had a blast there 3 years ago, also I am extremely stubborn when it comes to painkillers won't take anything stonger than co-codamol 15/500mg....feel like I'm giving in to "the beast" if I do!!!
Hugs Janette xxxx
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Hi Janette

I agree it's a worry about the menopause as none of us know when we would naturally go into it therefore it's a bit of an assumption that at 50 you will be! After my primary treatment of zoladex for 2 years and hormone treatment my oncologist was sure I would be in the menopause - this was at 41, so a bit of a radical assumption! Of course when I stopped zoladex my periods came back and I think that's what caused my secondaries to develop sooner than they would have done. Having had chemo when I was dx with secondaries I made sure I was post menopausal by having my ovaries ablated (surgery ie the general anaesthetic wasn't an option due to heart problems). It may be worth you exploring this if you feel you want to be definite or ask to continue on zoladex if you are ok with carrying on, I don't think they can stop you.

As to Denosumab being 8 weekly it seems to vary between hospitals/consultants - as do so many of our treatments! I'm happy with the 6 weekly schedule I'm on, mainly moved to as I'm on 3 weekly other treatments so it fits in with those. I thought at first, when I went from 4 weekly to 6 weekly, I would feel more achey as I was convinced I used to ache just before my injection, but I've not had any real changes to my achey-ness at all - still ache a lot! Maybe as to move to 6 weekly and see how that suits you? Also you have said on some other posts how you are struggling at times with the pain, you could mention this as well? I hope you're not worried about it as you have had a recent scan but if it's affecting you maybe there's a pain killer you could take if it's particularly bad, or even have a shot of rads if it's always in one place? Anyway, take care.

Doodles - quick note for you - the lingo is very weird at first but you will get used to all of our abbreviations, but, again, ask us anything, we are happy to explain and we don't bite - promise!

Nicky x

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Hi Doodles,
Although I have bone mets for three years now, My oncologist tends to use my liver mets as a recovery measure, so I haven't really paid the bone mets as much attention....what I did want to share tho, is that when I see him, I type out all my questions on my iPad in advance and just hand it over to him.... saves me having to read them out and I just relax and listen to his replies.( if you prefer you could write your list and hand it over) it just ensures that no questions get missed out!

I expect the others have already mentioned this too, but if I am upset or scared about possible bad news, I take a friend and ask them to take notes... the onc won't be worried by this .... it's commonplace as appointments are stressful and we can easily forget what was said. I also ask for copies of my GP letters.... ( years ago a letter sent to my GP, was full of inaccuracy) These copies are sent to my home and they are a record of the appointment and my health status... so I find them useful to keep for reference. moijan📚Xx.
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Hi girls I hope you are all coping OK. Berniece I am so sorry to hear you have had such a tough time of it. I hope things will go the other way for you now.
As you know girls I had a lot of trouble with my jawbone and teeth which I thought was down to the zometa. Well good news the numbness has gone completely. I still get trouble with my teeth tho. My mouth is a lot better moijan thanks for the tip. I'm ringing with difflam and it's really helping.
Today is the first day my mouth feels normal.
I am feeling really well and positive. Well until I have my next zometa. It's weird some months I don't get any side effects and another it puts me in bed for 2-3 days.
Anyway time for sleep now. Love and hugs to you all. Xx
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I have just sent it sorry forgot to press post lol.
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Thank you for your replies that's really helpful. I'm taking a list of questions with me. I think not knowing things at this stage is driving me crazy and reading your lists it's like a different language sometimes but I'm sure I'll sion know all the lingo.
Maldives /Sue ....no message from you as yet x

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Hi doodles
I amight going to try and private message you. Haven't done it before so let me know if it doesn't go through. X sue
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Hi Nicky, nice to hear from you.
Just wanted to pick up on a couple of things you have just mentioned in your last post.
At my last onc appt she mentioned that when I hit 50 (which is november this year) she will probably stop my zoladex injection as my body should have also hit the natural menopause and that my ovaries have been suppressed for that long now that they highly unlikely to recover. I'm not comfortable with this as 50 is still quite early for the natural menopause to come isn't it???
Also in October last year she changed my denosumab to 8 weekly, I questioned this saying most the ladies on here get changed to 6 weekly but she said 8 weekly is the current guildline on it. I have definitely noticed that I am getting more pain and achey going that length of time!
Hope I haven't babbled on too much there, sometimes it is hard to try and explain things in text! Lol
Hugs Janette xxx
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Hi doodles.

Sometimes this thread is really busy, sometimes it's a bit quieter - it just depends if some newly diagnosed ladies come on and share their fears - which we try to help with - or sometimes it's just because we're having a natter! Either way, just join in as much or as little as you want, it really doesn't matter if you just find reading the forum is helpful and you don't want or need to post. I think a lot of us read every day but quite a few, including me at times, don't add anything as they feel they can't add to what has already been said.

Anyway onto your questions. You can ask as little or as much from your oncologist as you want, you are entitled to see, and get copies, of all scans and reports. It took me a while to eventually ask some probing questions and now there's no stopping me!

What you will want to know is what type of SBC you have. Is it hormone positive (or negative) and is it HER2 positive (or negative). This will determine your treatment. You might be put on a course of chemo, which is likely to push you into the menopause, or hormone treatment which will also affect your menopausal state, including the possibility of zoladex which puts you into an induced menopausal state, which can be reversed once zoladex is stopped. You are most likely to be on a bone strengthening treatment as well, I think all of us are and it would be unusual if you weren't. This is now tends to be a 4 weekly injection called Denosumab, which sometimes gets changed to 6 weekly after a time. You are normally scanned after 3-4 months after starting a new treatment to see how it's working. This often isn't a bone scan as nuclear medicine isn't given that often but CT scans or MRI scans also pick up changes to bones and will indicate if they are healing.

Hope that helps and I'm sure some other ladies will add their views as well if there's other questions they have asked.

Good luck with your appointment and either take someone with you to take notes, or take them yourself, there will be a lot of info to take in which, in my case, always produces more questions, usually once I'm out of the room!

Nicky x

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Hello Bel
Thanks for posting about the jaw x Ray ..will get it sorted hopefully.

Doodles
You have Mets in the same sort of places as I have ..I was dx 2015 and have been on letrozole since and denosumab .
Yes ..you will be able to see your bone scan if you ask the oncologist ..it just shows "iffy" areas ..these are not necessary Mets ..can be arthritus or previous injury I was told .
It's funny looking at your scan for the first time ..I almost felt it an intrusion on my personal insides !! You are maybe some one that likes to know all these things ...me I don't anymore ...
Hugs xxxc
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Hey all 🙂 I can't keep up with this conversation as I haven't been on for a few days. Do you all come on daily?? Anyway I'm fairly new to this mets business. Bone mets was officially confirmed on Thursday and results of CT showed it is not anywhere else .... I couldn't believe how happy/relieved I was at this news as I think I had prepared myself for the worse. My first onc appointment is Wednesday this week and I guess treatment will start fairly quickly. I have no idea what to expect from the appointment but I prefer to know everything. I want to see my bone scan ..will they show me it? I've saw some of you saying exactly where the mets is .... my breast consultant only said it showed on lower spine, ribs and pelvis but that doesn't really tell me much ? Is it spots? Is it loads? Is this the kind of thing the onc will answer this week for me? Im presuming I will be put through the menopause now? (Im 43). So many questions and I feel I don't really know what I should be asking. I'm rambling on. Any suggestions for questions I should be asking?

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Hi Caroline 

im on denosumab and my dentist sent me to the hospital for a jaw X-ray, at the start of my treatment, he said he will be doing them regularly to keep an eye on my jaw! 

Sometimes I think I will glow the amount of X-rays and scans I've had!! 

It may be worth asking your dentist to refer you to hospital dentist to get X-ray done.

Weather here a bit windy and damp too, shame as hoping to complete our poly tunnel! Next calm day we will be out there, hoping no sudden gusts though or we could find ourselves down your way when we put the plastic cover on!

Hugs and good wishes to all. 

Bel. X

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Sent you a pm bernie

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Hello Bon
Thanks for asking ...the teeth are better but I'm waiting to c oncologist in April to discuss maybe a jaw xray before I start denosumab again ...I will get a dental check up as well but it wasent just one particular tooth ..they all went berserk !! ( dentistry in 50s and 60s was very basic and I'm paying the price now)

Well we had a very rough night here ..windy and wet ...where do all the plastic bags and crisp packets appear from when its windy ..they seem to be everywhere in our garden area?
Might just pop to Next sale later for a little nosy as still have vouchers to spend !
Enjoy the weekend every one .
Xxx
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Bernie,  I would ask the doctor how she knows it is a cyst and not a tumor? I can tell you at my last scan of my lungs there were two "things" they called new  nodules, but the oncologist said that neither her or the radiologist thought they were cancer bc the make up of them was  different. So what I'm thinking about for you is maybe a cyst looks different on a scan  than a tumor. This is just a guess on my part. I'm sorry you have had so many complications. Does pancreatitis run in your family? I think it can be genetic if I remember correctly. Hugs and best wishes! FF

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Bernie I'm glad to hear letrozole and denosumab are working for you after all the other stuff you've been through

 

Carolyn how are your teeth? Are you likely to have them fixed soon so you can return to denosumab? I am going to the dentist next week, just for a check up, my teeth are OK. My normal dentist is on maternity leave so, as I'm having a bone scan the day before, I thought I'd better ring and check her replacement isn't pregnant as well. However he's called Justin so not much chance of that.

love to all B xx

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Hello Bernie
This is Carolyn ..you didn't dream it up !
Wow what a story you have told us and you poor love having to suffer so much especially near xmas time.
I hope as letrozole lady too, that this little pin continues to do what it should do.
No one here is trainned to give medical advice apart from what we have experienced but we are real people that can offer kindness and support.
There is a helpline on the home page where there is experienced nurses on call to answer any questions you might like to ask. Personally , I rely on this site for answers to my queries as I don't have a secondary breast care nurse at my hospital ..I know the larger hospitals do but sites like this are a godsend to many.
Hugs xxx
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We can't offer medical advice, sorry! But we do know that there are lymph nodes everywhere in the budy and their job is to trap bacteria, not just cancer cells. So something like a cold or sore throat or pancreatitis, any itis, can lead to enlarged lymph nodes, which usually go down after the infection has gone away.

From what you have said, not sure why you would assume that cancer will make its home there xx however, if you have worries like that, best go back to see your doctor, hope that helps

M💚💚💚
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Sorry that was Janette I was replying to wasn't it not Caroline who I have clearly made up lol xx
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Oh thank you Carolyn xxx Yes I know what you mean re Letrozole being your best buddy, as I was taking my tablet the day after my scan results I stared at it thinking wow this tiny 2.5mg tablet is my saviour and kissed it lol. And yes long may it continue for us all 😊.
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Oh dear Bernie, you have had a rough time of it! Sorry can't help with the pancreatis??( Sorry spelt it wrong! ) but just wanted to say great news regarding your response to letrozole! Letrozole has become my "best buddy" for the last 18 months....long may it last!
Take care, hugs Janette xxx
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Hello all! I first posted in November '16 after my shock new Stage 4 diagnosis (bones). I have not posted much since as I seem to have been constantly ill! At the beginning of December I was admitted to hospital via ambulance after an early hours 999 call due to horrific pain in the whole of my abdomen and what felt like the weight of an Elephant on my chest. I was diagnosed with Pancreatitis out of the blue apparently caused by gallstones they were not however trapped in my bile duct so no idea why it happened I was extremely seriously ill in the most agonising pain that thankfully my morphine pump helped with; I really could not have coped without it! I had my gall bladder removed after 2 weeks in hospital and was finally discharged 2 days before Christmas. Recovery was very slow not helped by an infection diagnosed on New Year's Day although noone had any idea where the infection was! Half way through February I began to recover, then, for the last 2 weeks have had a chest infection that I think is finally subsiding. Anyway before I was struck down with the chest infection I had my second 3 monthly CT scan since starting the Letrozole and Denusanab in November (incidentally I only had 1 dose of Denusanab as it was put on hold when in the hospital with concern that it may have caused the pancreatitis but oncologist thinks not, I have now had my second dose and will continue monthly as planned). I have had my scan results Tuesday this week and the oncologist was so pleased with the reponse which showed an area in my upper spine had 'healed' as she put it and the two areas in my hip showed healing. It also showed a cyst on my pancreas and enlarged lymph nodes in that area that she said are both a result of the pancreatitis and can happen. Well after the elation of the 'healing' you can now imagine what I am focussing on and scaring myself to death about! Those lymph nodes and cyst and am terrified the cancer cells will will set up home there being those area are already compromised. Has anyone else experienced the pancreatitis or are any of you ladies medically trained and can throw light on the cyst etc situation?! Thank you in advance and sorry for rambling x
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Hello pmol
I'm so sorry you had to get the bc at such a young age ..this is such a cruel disease and takes no prisoners for age etc .
A lot has been written about it being self inflicted with lifestyle ..I don't think that comes into the equasion for most of us ..mine I think like Stress head is inherited through the faulty gene but for others I think its just a toss of the coin like Russian roulette really.
But ...we are woman and know how to give the big "c" a big kick up the rear end if we can !!.
Hugs xxxx
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Maldives and PMOL, sorry to hear about the pain problems..i hope yo get some relief soon.

PMOL...thanks for sgharing with us abot the crying...its nice to know i am not alone. I want to cry for so many reasons, most of them you mentioned and even when i dont it is just bubbling under the surface. How lovely of your youngest to be so brave. I tell my daughter the truth (she's grown up but still my baby) about things but try not to burden her with the everyday c**p. I know none of this is my falt but it still doesnt stop me feeling guilty about the way it  affects and changes her life.

rest assured you can cry all you like with s on here, someone will aways be there with a shoulder. xx

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29😊
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Hi girls - thanks for your support...  it's been a much better week but keep waking up in the middle of the night (4am today).  I've got my 'bag of goodies' at all times with me so that if any major pain happens then can hit it straight away.  Spoke with the Macmillan nurse and said that she was happy with what Inwas doing and to have paracetamol on a regular basis (4xday). 

 

Still, think that at any point through our treatments when we have to change drugs its a scary and anxious time... now that aI've had at least a doze of the regular ones, hope that the flaring would calm down and things settle for a while, specially for May 😉

 

Maldives sorry about your mouth🙁 Haven't had any problems (yet) with mouth ulcers but if I hear of anything i'll let you know... cinema sounds ace!!! It's on our must see list this month so will probably do it soon. 

 

My girls are ace 😍 (Not that i'm biased!) the eldest (S) is having more trouble speaking about 'it' but she shows her concerns about the situation in different ways, probably helping out moreo and hugs and if I'm in bed coming and chatting away.  The youngest (F) has asked the most mature, scary and thought provoking question.  They all deal in different ways and our motto has been to be honest with them.

 

my original dx was when I was 35... had a non-cancerour tumour out when i was 24 so when ai found it just wanted it out... the rest as tthey say it's history... 

 

right... feeling a bit sleepy.... xxxxxxxx ❤️❤️❤️❤️❤️

 

 

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Choc ices are the way forward!!.

My mouth and tongue have been really sore after cycle 4 but the taste and texture of a choc ice is brill!! 

 

Lou xx

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Hi Moijan,

Thanks for the advice, I will give it a go. Start my third cycle tomorrow. It goes so quickly. I cant belive Ive done 6 weeks already.  

have a good weekend  

sue xx

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thanks mojan I will give that a try. I dont rinse at the moment so I will give it ago.  sue x

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wrong date again

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