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Bone mets - please join in

helen44
Member

Re: Bone mets - please join in

Hi Podry

Sorry to welcome you on the SBC threads - we are a friendly bunch & feel free to ask any questions you may have. I see Nicky08 has already replied to you so you have some good advice already! I was diagnosed with primary bc & secondary (bone mets) together in Dec 2012 followed by liver mets in Sep 2014. I get along pretty well at the moment, the first few weeks are the worst and then once you have a treatment plan everything becomes more the 'norm'. Like Nicky my receptors changed & I became HER2+ so could have herceptin. I've been on tamoxofen, letrazole & now on exemestane, with herceptin, zoladex & denosumab - all of which I find quite tolerable at the moment. Also had 6 cycles of docetaxol to shrink the liver mets which it did!

There is always lots of help and support on here, I don't post very often but always try & read as many posts as possible.

Take care, love Helen x

rosie53
Member

Re: Bone mets - please join in

Hi Helen, thanks for that, I also have mets in my ribs so maybe that's what is causing it, I'm pretty sure I will be seeing my onc in the next few weeks re: my markers results so if it is still happening I will mention it to her.

Thanks Janette xx 

Helen_12
Member

Re: Bone mets - please join in

Hi Natalie ,I've just had the exact same ,had a chest X-ray this afternoon and luckily my doctor asked them to ring him with result ,so within an hour I was told my lungs were clear ! Relief as I too feared the worst .he thinks that my Mets in ribs are insisting irritation that causes muscle spasm which in return effects breathing ! I've had quite a lot more pain in side just recently so need further investigations .but had the awful chest tightening pain and almost blockage feel in throat and breathlessness which has been ongoing for last 4/5 days hope this helps ,as know how scary this feels ,I've been pretty down in the dumps.relieved now but still worrying a bit about the cause Helen xx

rosie53
Member

Re: Bone mets - please join in

Hi ladies, just want to pick your brain?? Been feeling a bit tight around my chest/throat area for about 4 or 5 wks now, it's a bit hard to explain really, I wouldn't say I was breathless it's more a dry tight feeling with a bit of a cough. Don't want to get paranoid that I may have progression to my lungs 😦just wondering if anyone could shed any light on it?? Had CT about 6 wks ago and it was stable although markers have been rising slowly and have got to have them re-done tomorrow, I think I remember reading something about denosumab causing breathlessness and was wondering if it was maybe that? 

Hugs Janette xxxx 

nicky08
Community Champion

Re: Bone mets - please join in

Hi

yes, it's completely under the skin so you can do anything you'd like including swimming etc. it also doesn't need flushing unless it's not used at all for more than 3 weeks in which case they just run some saline and small amount of  a blood thinning drug through it to prevent blood clots. If it's not used at all, or won't be after IV treatment has finished they can remove it. Some ladies with primary BC have them but not usually as they aren't needed after the initial chemo part of treatment. Definitely worth considering /asking about, also the nurses prefer them as they are quick to use.

Please feel free to ask any other questions about this or anything else, especially once you know what the treatment plan is. I think all of us, as has been said already, did find it easier to cope once we knew what we were facing or dealing with.

Hugs to your daughter for her 18th on Friday, my YD had her 18th about 10 months after my SBC diagnosis and she had quite a melt down so be prepared, it's horrible what they have to go through, which is the thing that's gets to all us Mums.

Nicky x

Podry
Member

Re: Bone mets - please join in

Hi Nikki and thanks, yeah, I need to know all that I can. Not taking it all in yet and it will be weeks before I will be up to speed! Thanks for the explanations Woman Happy much appreciated.  Loving the idea of non IV type treatments. I had a hickman line before and got infections in it...twice! Hoping ther is an alternative if necessary as it was rather unpleasant having it fitted.  It foes into you jugular and the tube is then brought under your skin and out onto the chest wall. The whole 'dont breath again till I tell you you an' is awful probably only seconds but really scary! Showering etc was always a pain the butt.  Can you bathe, shower, use saunas etc with yours in - thinking quality of life here too! Lol

nicky08
Community Champion

Re: Bone mets - please join in

Hi podry, you sound like me, needing to know everything so you can understand. This forum has been so good at educating me about SBC when I was initially diagnosed in 2008 with mets and since then. I would not have known about receptor status changes if I'd not read it on here and I would therefore be having the wrong treatment. It has helped me challenge some of my oncology teams decisions or views at times and I'm sure I'm seen as a pain in the @rse but who cares, I've only got one life and I'll fight as much as I can to get the right treatment. 

Regarding zometa it's one of the bisphosphonates group of bone strengtheners and some ladies are on it as it is working well for them. Others, like me where I had progression in my bones, have been switched to Denosumab which is the latest type of bone strengthener, but not a bisphosphonate. It is given as a subcutaneous injection every 4 weeks so doesn't involve hunt the vein. If you do need to have a form of IV treatment consider a portacath which is a device implanted under the skin, usually in the chest wall, through which the IV treatment can be given, also bloods can be taken from it but normally only by trained ie chemo nurses. I had one fitted about a year ago and it's no problem at all plus it's completely sealed so there's no risk of infection from going about your day to day activities. - which is something we all need to get on with.

hope you get some answers soon and they are better than you  are probably already imagining!

Nicky x

Podry
Member

Re: Bone mets - please join in

Hopefully it is anemia that is causing your breathlessness Helen_12. I'm just new to this situation but I am a nurse (mental health and health visiting) I also know that it is a possibility with bone mets. Hope you feel better soon. X

Podry
Member

Re: Bone mets - please join in

I was reading about the possiblility of raised blood calcium in the early hours Jam, I hope you feel much better really soon. Zometa is another drug I'll need to learn about. I remember how much I needed to learn at the start - it kept me up at nights but was and it seems still is one of the ways I cope, I need to understand as much as I can - it gives me an improved feeling of control, even though I know its mostly entirely outwith my control. I'm still behaving quite robotically at the moment I know I am saying the words but its not really sunk in... I am waiting the storm to hit probably after I have that first appointment. Hugs and best wishes Janet x
Jam
Member

Re: Bone mets - please join in

Hi Podry Sorry you're here but as everyone else has said once you get your head round it and a plan things will settle down. I have mets in spine was diagnosed after unrelated pain in knee and bone scan found it 2 years ago. Had nearly reached my 5 years from first diagnosis.  This forum helps you realise there are lots and lots of treatments and someone can usually help. I'm just having a blip at the mo am on letrozole and zometa but wasn't drinking enough so developed high calcium.  Am now slowly on the mend again and just visiting the group even when I don't feel like joining in I know I'm still supported. Good luck xxJanetxx

Podry
Member

Re: Bone mets - please join in

Yeah, I have been on hormone treatment since my chemo ended first time, never had radio so that's an option. I already had Herceptin 1st time around too also after chemo so I am aware of that (I had to pay £5k for my first two treatments as it was new and very expensive so NHS wouldnt pay for it even though my oncology consultant wanted me to have it - I won my fight and they paide the rest - didnt pay back what we spent thoug. I suspect that is why I have had 10yrs cancer free) also had 2 yrs of Zoladex (chemical hormone ablation). Mine was, well, is; Er+Ve, PR+ve & Her2+ve. I also have had my ovaries removed voluntarily when having a hysterectomy due to massive fibroids caused by Tamoxifen... It's a real bam pot this disease isn't it? Good to hear herceptin is no longer IV 👍 since I have no veins left 😱 any IV needs to be done through a hickman line. Pertuzamab is new ro me will so have a search to learn more abput that. Just this awful waiting for the next step... A call fromGP or hospital abput the next step - an appointment with oncology to discuss treatment and confirm the diagnosis and discuss the way forward. 

It is so encouraging to hear people with positive stories, I am sorry to hear though of so many people in this awful position. Thanks tomeveryone for kind thoughts and support. Much needed. 😊

nicky08
Community Champion

Re: Bone mets - please join in

Hi podry and welcome to the place none of us want to be in! However you have alrwady had excellent advice from some of us and I'm sure more will be along soon, it's a bit quiet on here at the moment with possible holidays and /or family times. I'm a bit absent at the moment due to a pending house move - why I need that additional stress I do not know!

The forum is a bit difficult to navigate, quite different to when you used it before and this is only a recent change which, for me, is causing loads of typing issues as I use an iPad and it doesn't seem to like those, so don't worry about any mistakes etc, we'll know what you mean.

i have been living with bone mets for over 7 years now, diagnosed nearly 5 years after primary for which I had an excellent prognosis - so there's no telling when it might rear its ugly head again. I have done very well In those 7 years with no pains and have been on bone strengtheners all the timers well as hormone treatments and sometimes chemo. Two years ago I was also diagnosed with liver mets and found that I had changed from being HER2- to HER2+. This has opened up a new angle for treatment some of which wasn't even being used when you had your primary. I'd say for definite you will have Herceptin, possibly with another drug, Pertuzamab, which is very new. Herceptin on its own is now given as a subcutaneous injection so none of the IV palaver but if you have Pertuzamab as well, like me, you do have to have the IV palaver! Hopefully you will get a treatment plan soon and I would imagine you would have a CT or similar scan to determine if the one bone met is the only sign of SBC. Come back at any time to ask questions, there's usually someone who has had the same experience and can offer advice and all of us offer support.

Nicky x

Podry
Member

Re: Bone mets - please join in

Thanks Natalie, still trying to figure out how to navigate the site, it is very different feom it was 10 years ago! Have spoken to all my immediate family except Dad who I will be able to see today, I had not talked to him at all about the possibility somits gonna be a bolt put the blue for him, feel bad and wish I'd told him something sooner. I will keep in touch - these forums reallynhelped me in myndarkest places at the startbof my journey 10+ years ago. I amglad to find they remain and are still supportive. Thanks x

rosie53
Member

Re: Bone mets - please join in

Hi Podry, glad we could be of help, we all understand that thick fog you are in when first dx....I had never heard of mets before last year!! To answer your question about scans, I have a bone scan every 6 months and CT every 3 months but every oncologist works different so this doesn't necessarily mean the same will happen with you, my mets are to my hips ribs and spine.

Good luck with everything and keep us posted on how you get on.

Hugs Janette xxxx 

Podry
Member

Re: Bone mets - please join in

Wow, this is just the kind of information that I needed to know, thanks Mermaid007 (love the name!) I have tried to convince my tamily of this sort of possibility but without the real facts Im kinda groping around in the dark, your information is bright light in avery dark tunnel. Just got my Dad to speak to tomorrow then family know the score, then have a variety of friends and colleagues to inform. I feel the need to get it out there so I can just get on with it and not constantly having to repeat my story again and again. I was asking Natalie, I wonder if they rputinely do a cat scan to identify any possible soft tissue involvement as part of developing a plan. I hope to work again soon, once this bloomin shoulder pain egts under control, I have Rheumatology appoint on 18th so hoping for steroid onjection. Apparently the shoulder os amess with calcification etc so no wonder it has been so painful, if that can be sprted I can get back to work and get on woth life working aorund this. I will have a look at oligometaststases thanks dor that info. I think I will again become aregular here. I was when I was dirst dianosed and used it 24/7 initially, like a sponge learning all I could. I amsorry tomhear tou own diagnosis has more than one met and I hope you are doing well and managin to enjoy life despite this horrrid disease. Thank you. 💕
Podry
Member

Re: Bone mets - please join in

Thanks for tour word of support, it just feels like I'm reliving a repeating nightmare that I now can't excape. Until I really know what it means and what the plan is I dont suppose it will improve. Spend tonight speaking to my family daught - 18 on Friday (Happy Birthday 😕) , son 23 and my dearest hubby who has been my rock through out our 27 years together. Hoping to get acall tomorrow for appointment with oncology and more information will be forthcoming from that. Do they routinely do a full body catbscan to rule out soft tissue invasion! Sorry to hearbof your own dx but very encouraged by your positive story. 👍
Mermaid007
Member

Re: Bone mets - please join in

Hello Podry,

I was diagnosed with multiple bone mets 6 months ago 16 years after my primary and I do understand your feelings of shock and dispair. However.....these days bone mets are much easier to control with hormone meds and bone strengthners as Natalie said. Ladies with bone mets are living for a long time and many working full time, travelling, socialising as before. Also with one bone met only your prognosis should be very good I think it may be called oligometastases when there is only one met to one organ and carries a favourable prognosis. 

Be kind to yourself

xxx

rosie53
Member

Re: Bone mets - please join in

Hi Podry, sorry to hear you have had some rubbish news today. I was dx with bone mets in March last year 7yrs after my primary and to say it was a shock is an under statement!! Give yourself time to absorb it and jot things down that you might want to ask your oncologist when your appt comes as I'm sure your head is in a whirl at the moment. I was put on tamoxifen last year and I also have denosumab injections  (bone strengthers) which also help with pain and I have zoladex injections to put me into menopause  (I'm 47), touch wood I have been stable since my treatment plan started and I am living a relatively happy normal life, I also had a rotator cuff injury a few months ago so understand exactly what you mean about excruciating  pain it was horrible they gave me a cortisone injection and that did the trick.

Take care hugs Janette xxxx 

Podry
Member

Re: Bone mets - please join in

Hi folk, head in a spin, just taken a call from my GP regarding some bone scans done on Friday. Not 100% yet but likley to be a very early 7mm bone met on my shoulder, a coincidental finding following xray to explore the cause of unexplained excruciating pain in that shoulder - Which now appears to have been entirely unrelated as likley due to a rotator cuff problem which was also identified on the scan. 

I have to go back into 'the system' oncology etc to further explore the images to confirm for sure and discuss treatment.  

I was dx with primary bc 10 years ago in April '05 aged 39 years, ductal with lymphatic and vascular invasion within the breast, radical mastectomy, no lymph node involvement, no radiotherapy EpiCMF chemo for 7 mths,  1 yr herceptin, 5 yrs tamoxifen and was about to complete a further 5 years of Extamestane - Arimadase inhibitor.

i am in a state of shock and not quite getting my head around it, sounded like GP was gently bringing me to the realisation that this is a met...only one and small. I have so many questions - mainly how long will I get?

i turned 40 during treatment and seems I will turn 50 in Nov doing the same thing.

sorry just seem to be rambling - trying to process my thoughts and situation.  Id welcome others thoughts and relevant experiences of how quickly this progresses. 

Thanks for listening.

Helen_12
Member

Re: Bone mets - please join in

Hi ladies ,I am afraid I don't post very often ! Was so shocked to have read terrible news about Helen am so very sad .i do dip in and out of forum and feel bad about this .ive been stable with bone mets for a little while ,but recently have been quite breathless without much exertion and worried that I may have spread to my lungs ! ? Has anyone had experience of these symptoms ,Helen x

edwina64
Member

Re: Bone mets - please join in

Hi Lynq it's  great to hear you are stable and doing well no guilt allowed it bucks us all up hearing good news.Ncs means numb chin syndrome....very wierd half my lip and chin are numb. Enjoy your wedding and also funny face glad you sorted some of your problems. Put sbc out of you minds for the day and have FUN!

 

sallyhennypenny
Member

Re: Bone mets - please join in

I haven't been on the forum for a couple of weeks for one reason and another and I have just seen the awful news about Helen our lovely 2catlady.  I am so sorry, she had such a good sense of humour and often made my laugh. Damn sbc 😞 

rosie53
Member

Re: Bone mets - please join in

Hi ladies, it's been pretty quiet on the bone mets thread lately, I think we are all still very low about the loss of our lovely catlady, I can't stop thinking about her.....such a sad loss.

Lynn, that is really great news for you 😉you must be feeling ecstatic, crack open a bottle of something check!! I have to have my TMs re done next week as they are still rising, only slowly though and my onc said she isn't worried as my scans are still stable,  if they have risen again this time she is going to switch me from tamoxifen to letrozole which I think will happen as I have had quite a bit of back pain lately  (apart from that I feel really well).

Funnyface, glad to hear your breathing has got better and long may it last, I'm sure you will be feeling much better for your daughter's wedding.

Ginger and Edwina, hope you get your dental problems sorted soon!

Well I managed to find a holiday finally, we are off to Cyprus next month and can't wait 😀never been there before but I believe it's lovely.

Take care ladies Hugs Janette xxxxxxx 

funnyface
Community Champion

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Lynn's, Put on a big smile and enjoy that wedding! I'm glad you are feeling so well. I gave sorted through my issues that popped up and will gave a great time. My breathing has greatly improved and I can go without O2! Will have it in the car in case!  started one new med last week and one this week, so far no side effects!! Yahoo big worry lifted! I dropped wig off at hair dresser and he is fixing it up even coloring it. This is just in case. Only 25 percent lose hair, but wanted to be prepared. My leg has settled down. I have been icing it and wearing flats to take any forward pressure off it. I also will get cortisone injections in it on the 18th so I should be all set to have a grand time. I will be thinking if you having a good time that day. FF

Lynnq
Member

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Hi Ladies, it is a while since i posted but i read every day. I see that some of you are having a difficult time.
Edwina and Ginger I hope that you manage to get your dental problems sorted out. What is NCS..?

Funnyface hope things work out for you. With the wedding coming up you must be even more anxious. As Belinda says you made the right choice. My son gets married on the same day.


I also have problems with my weight, however I think that mine is more down to comfort eating, and not sleeping, so I get up and make myself hot buttered toast and a milky drink.
Sometimes I feel a little guilty reading all of your problems when I continue to be quite well and stable. It seems that the radiologist who read the MRI scan on my spine recently cast doubt on whether I did actually have mets in my uppper thoracic area....?.?.?.
I feel a bit bewildered abd confused by that. Onc says I did but that they have reduced to invisible and that the Letrozole is obviousy working very well for me. Can think of loads more questions that I wished I'd have asked him, but too busy crying tears of relief
Sorry it is such a silly thing amidst all if your REAL .anxieties.
I Think the loss of our Helen, and a recent lady who I saw at the hosp sometimes has also made me a little down.
Still, there'll be lots of smiles at our son's wedding


Love to you all.....sorry for going on...especially as my worries are small ones.......

edwina64
Member

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Thanks Ginger I have bone mets as well diagnoised breast cancer and bone mets double whammy  coming up two years ago. What a shock after 11 years!   All the best Edwina x

Ginger21
Member

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Hi Edwina
Have had scan and no brain mets thank god. Have NCS on right side lower jaw which is being treated like reg bone met. Numbness seems not so prominent after 8 cycles of ERIBULIN and tumor smaller. My dentist's X-rays showed no sign of tumor nor mets. also had back pain so my onc ordered CT and bone scans which showed that my cancer had returned and spread after 11 years.
Don't think dentists should second guess re brain mets. Hope all goes well re treatment and am sorry you have to wait
edwina64
Member

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Hi Ginger thank you so much for your info. I had toothache  first and went to my dentist who xrayed me and showed me a small abcess under my wisdom tooth. Because of denosemub my jaw had eroded and he said I should get the tooth extracted by the hospital as  they would liase wkth my onc. He gave me antibiotics and it calmed the toothache  down. My onc booked me an appointment with the hosp dentist but about a week later I developed ncs. The dentist took xrays but nothing showed up except a small dark line on my wisdom tooth. The jaw had erroded and it was near to the nerve that could cause ncs but he said I should have a brain scan because you can get a tumour at the back of your neck that can cause ncs as well which is why I am so scared. Toothache has calmed down but still have ncs but only half lip and chin on left side so sfill feel pain!

I am sorry to ramble on just trying to make sense of it...great to hear from somsone who has the same. All the best to you Edwina x

 

 

 

Ginger21
Member

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Hi Edwina
I think the condition you may have is called Numb Chin Syndrome. I have had this for 10 months but don't understand your toothache as the numbness in my chin & lip have blocked a nerve so no feeling. I have a tumor on my lower jaw which has responded to ERIBULIN. Had a tooth extracted prior to starting ERIBULIN and DENUMSAB - ????(known to me as XGEVA as I'm in Australia). I know it's very scary but please take heart as I don't think its the end of the world. My dentist had no idea what was going on so my onc referred me to hospital dentist for treatment. Think it's a v rare condition and not widely understood. Have just completed 6 months 8 cycles of ERIBULIN and tumor decreased so my onc wants to start me on Tamoxifen. My first post but you sounded so upset. Good luck and hope this helps. Hugs Ginge
Marie123
Member

Re: Bone mets - please join in

Hi Edwina and FF sending lots of positive vibes your way. Ditto what Nicky has said, hugs to all having a difficult time.
Marie xxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi edwina, do sorry you have this worry on top of all the pain you are getting. Sending you huge hugs and fingers crossed that it's all linked to the tooth problem and nothing else. Come and sound off here at any time, you know how we all understand x

FF, hope all goes well with your leg treatment and you start feeling more mobile, fingers crossed for you as well, what with the wedding coming up.

Hugs to everyone else going through anxious times at the moment.

Nicky x

Jam
Member

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Edwina sending you huge hugs. xxJanetxx

funnyface
Community Champion

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Edwina, I'm sorry you are going thru all this pain and worry. The pain is enough you don't need the added worry. We all have so much on our plates with this! I wish we could just have normal lives. Sending you hugs! Thanks for thinking of me! FF

Rose_Red
Member

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edwina64
Member

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Hi everyone just managed to log back in after the update. I am feeling v scared at the moment, was supposed to go on cape on Tuesday but still got toothache and off the denosemub injections. Had to wait over 2 hours  for my appointment and was very nervous  by the time I got called in. The upshot was I can't  have cape if Imhave an infection in my tooth until it is sorted out. Have to have a head scan on Monday with results on Wed to see what's  what. Onc could be spread to the brain and asked if I had headaches.  I said no but seemed to have a headache  ever since! My lip and chin are still numb so could also,be cancer in the jaw bone or some of rhe jaw bone might have died due to the denosemub or maybe just toothache. ..but I have the numb lip etc... It all sounds horrendous . I did ask if any treatment available and she said maybe radio or the cape. Anyone else had anything like this...so scared  don't  want to hear results of scan but have to know f you know what I mean. In lots of pain though, sorry to go on but can't  say much at home as everyone is

really scared  but trying to keep positive. Family round today talking about my 45th wedding anniversary next March!!  I was thinking won't  be here then. Hope you get sorted for the wedding ff these occaision are milestones really and after all you have been through you really deserve to enjoy you day. Good luck x

belinda
Member

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Gosh what rotten timing this all is FF Smiley Sad but I think you have chosen the best option, the one I would choose too.

That is good news Julie. Smiley Happy Glad you are home Jam. Smiley Happy

X

funnyface
Community Champion

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I'm thankful you have escaped the hospital Jam!! I need to take your advice and hit the bottle...now where is my water bottle? Congrats on stable Julie! I have good news and bad news. Good news no cancer in my leg with the bum knee. Bad news...knee is quite a mess. The knee is shot and needs replaced, but the Dr d o sent want to do it bc he says I'm too young. He also would want m e to lose some weight. He suggests I have it scoped and wanted to do it August 13th. This is 2 weeks before the wedding. This would be okay if everything went well. The problem is if he just can't trim up the meniscus and has to repair it I would have to be non weight bearing for 6 weeks. I'm not willing to risk that right before the wedding. Also they think the ACL is torn too. Next issue is that with my cancer and lungs he thinks o others involved in the surgery (like anthesiologogist) will refuse towant to do this and throw me out of surgery. Says it might take several times of setting this up to get it done. Also said this will probably only buy m e less than 2 years til I will end up replacing it. I've decided t o go for second opinion. Hubby had both his knees replaced and was younger than me and over weight too. I didnt want to use his dr bc if the extra distance in travel. His Dr now has rules on weight too and I would need to drop weight first. They would do  cortisone injections until I had the weight off. I can't see going  through all the mess for a temporary fix and then needing to go back in a little over a year to have the knee replaced. I think I'm going to take the injections and work at the weight loss. I've been working on it since I stopped gemcitabine and its been coming off. Before this it wouldn't budge. Have a great day.

stresshead
Member

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Julie D,, great news. Lets hope it continues for you and others.

 

had another 'hit' this morning when i read in Daily Mail that there are more planned axes to the CDF, 2 being Avastin and Everolimus amongst others. Devastating news for us all again!! Didnt really take the rest of the article in as too shocked so you ladies may have more accurate information??

I am a complete technophobe but i know some of you are briliant at getting petitions etc up and running...anything we can do to stop this happening again. Spread the word!!

x

Marie123
Member

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Julie, that is wonderful news, enjoy . Marie xxx

JulieD
Community Champion

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Just a flying visit to thank you all for your well wishes. I'm happy to say my scan results were stable Smiley Very Happy 

Glad to hear they´ve got your calcium levels back Jam.

Hope you all have as good a day as possible and those with scans, appts, results etc get positive news xx

Jam
Member

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Hi Jo I only have bone mets in spine diagnosed 2years ago I'm on zometa which is bone strengthening too. Came out of hospital yesterday my calcium is now back within normal range and Onc says not to worry thinking it might be progression its one of those things that happens if you don't have enough fluids. It's been scary and a wake up call for me. So keep the fluids up ladies. Hope you had good results yesterday JulieD. Good luck everyone. Just had my first cup of tea now better have another 🙂 xxJanetxx
Chocolates
Member

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Hi Jo, I just have one bone met on my sternum - no where else as yet so yes I think it is unusual bug not impossible. A very small spot seen on bond scan so I was sent for pet scan which confirmed it. If you can I would push for further tests although I'm on denusomab for my bones and I don't know what else they would give you.

 

hxx

scoobiesue
Member

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Hi Jo, they found bone mets when I fractured my femur. A bone scan showed several small spots on my spine and pelvis. I had radiptherapy on the hip. Now taking bone strenghtener and hormone tablets. Wishing you well. Sue x

lillybobs
Member

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Hi everyone....I dont post very often, but do read posts regularly...have just come home from hols and was so sorry to read the sad news about Helen. She was such a lovely, funny, inspirational lady who will be sadly missed but never forgotten.....God bless you x

rosie53
Member

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Morning ladies, 

Good luck with your results today Julie xx

Jo, I was dx last year with mets on my spine, hips and ribs, not sure about whether or not it's unusual to only have them in one place though. I have denosumab injections they are a strengther and help re - build weak bones  (I think!) They also help reduce pain, you have to have your bloods done 2 or 3 days before hand to check your calcium levels are ok before they do it, they are one of the newer bone strengthers and are very good, hope this helps.

Hugs Janette xxxx 

Marie123
Member

Re: Bone mets - please join in

Sending oodles of positive vibes your way Julie love Marie xxx
Mitch23
Member

Re: Bone mets - please join in

Morning ladies

 

hope all are well this morning. 

 

JulieD - the best of luck with your scan results today. Which hospital are you at in London? Please keep us updated on how you get on today. 

 

Would like to pick all of your brains if that is ok? I'm guessing a lot of ladies on this thread have bone mets. On my last scan there was a tiny area of suspicion on my spine that is so small they can't tell what it is. I've been told that it is very unusual to have bone mets in one place only. When you were diagnosed with bone mets were they in more than one place? Also , I'm having this denosamub injection. I'm not really sure what this is. Is it a bone strengthener? Does it help bone mets from  spreading? What exactly is it ?

many thanks 

Jo x

JulieD
Community Champion

Re: Bone mets - please join in

I'm having similar problems FF, hope they get it sorted soon! If you have a private message you can find it at the top of the page, there should be an envelope saying messages underneath, click on that to take you to your PM s.

 

Off to London to get scan results today. Good luck to all doing the same. Have a good week girls xx

funnyface
Community Champion

Re: Bone mets - please join in

Ok, Able to post again. Every time I try to post it takes me t o the home page. I can only post if I log out and sign back in. I can't sign out some times because only the option to sign in is there and I'm already signed in. I also got a notice that I have a private message and I don't know how to find it. FF

bill-ben
Member

Re: Bone mets - please join in

So sorry to hear about Helen RIP xxx