Bone mets - please join in

[Podry]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

Edwina sending you huge hugs. xxJanetxx

[funnyface]

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

[edwina64]

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]

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

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

X

[funnyface]

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]

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]

Julie, that is wonderful news, enjoy . Marie xxx

[JulieD]

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

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]

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]

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]

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]

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]

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]

Sending oodles of positive vibes your way Julie love Marie xxx

[Mitch23]

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]

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]

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]

So sorry to hear about Helen RIP xxx

[rosie53]

Morning ladies, Jam I hope you managed to get some sleep love, it's bad enough trying to get some sleep at the best of times whilst in hospital without keep being disturbed for treatment.

Funnyface, bet your so looking forward to the wedding and I'm sure when the time comes you will be feeling fine with everything sorted.

Well spent most of yesterday looking for a holiday for September, it started off exciting then by early evening I was losing the will, the prices have shot up for the canaries  (after the Tunisia thing) a friend mentioned Crete to us but neither of us have been there so we are dubious about it,.

Hugs to all Janette xxxxxxx 

[Jam]

Thanks ladies feeling fed up at mo. Why do they have to give your treatment in the middle of the night so you're disturbed and you disturb everyone else. Got my zometa which took all day to set up. Then more fluids but guess what it has been set up at midnight. I know I should be grateful but just at this moment I'm not. Rant over thanks to everyone. Fingers crossed for you FF xJanetx

[funnyface]

Welcome back from vacation, Marie. Jam hoping you get home over the weekend. Girls the wedding is Aug 29th. Four weeks! I can't believe it's that's close. Glo, my son had his meniscus repaired too. I know the recuperation is pretty quick. I'm just hoping I can  get it squeezed in before the wedding. I'm sure they are going to want an EKG and probably won't like the condition of my lungs. I just want to get fixed. FF

[Marirose]

It's ok now Lucy I'm just pleased to be back I am not very good with computers and I know I was to blame through my ignorance alls well that ends well Thankyou x

[Marie123]

Dear lovely ladies, I have returned from my holidays to the very sad news . My wonderful, funny sometimes naughty , but always kind friend Helen. I have no idea how she supported all of us when she must have been in pain and very poorly. I truly believe she is now in a wonderful place. Take care everyone Marie xxx

[Jam]

Just quick text still in hospital calcium is up and down. But at least I'm having zometa this afternoon. Then more fluids. Just wish I knew what's causing it. FF hope your leg's improving xx

[LemonDrizzle]

Good morning everyone. Managed to get on here ok so hoping I've done it right.
Jam, hope the calcium gets sorted so treatment can go ahead and then they'll let you go back home.
FF, your leg sounds so painful. Hoping meds make the wedding day less painful.
Have as good a day as you all can - love to everyone
LD x

[Lucy_BCC]

Hi Marirose

I am sorry that you experienced some problems getting back onto the forums we are working hard to get everything sorted so thank you for you patience

Best wishes

Lucy BCC

[Marirose]

Hi everyone so nice to be back on the site had so much trouble I was ready to throw this computer out of the window I couldn't bare to be without my Cyber Friends.

Orse I was so pleased to read your news I wish my skin mets would reduce I seem to have aquired more tiny ones. I've been on Denosumab 2yrs now don't think I have had any se's but last year I did get sciatica didn't think any more about it until a couple of month ago I was reading the se and that was one of them but not sure if it was denosumab.Anyway may your good news continue x

FF so sorry to hear about your knee it sounds nasty I do hope they can give you some relief for the wedding maybe a simple walking stick could be more use to you I use one for my MS and it gives me stability I hope it goes well for you x

Jam sorry to hear you have been in hospital over your calcium levels I do hope it gets sorted out for youx

Well love to everyone I'm sooo glad to be back xxx

[Glo]

Hi funnyface,
I have had two meniscus repair ops in the past.
It's done as day surgery, very quick! You come out swathed in a huge bandage and when you remove it there are 3/4 tiny cuts with 1/2 stiches in each!. I had virtually no pain after the first day and was up walking with no problems after 2-3 days.also tore my ACK but haven't had a reconstruction on that and still ski!
When is the wedding?
Good luck with it all
Glo xxx

[Chocolates]

FF - I think that sounds a good plan for the wedding.  It's really important to fit this awful disease around what you want.  I really hope your leg improves quickly so you can manage on the big day.  How long to go now?

jam - so sorry to hear you are back in hospital.  Fingers crossed the calcium levels have come down so you can have treatment today.

busy day today - one of our kittens is unwell so off to the vets with that one and then off to the hairdressers later to try and make sense of this mop on my head.  Bless them they always try but I have such a frizz at the front that whatever you do it looks pretty awful.  I must confess I'm not the best kept person and don't really bother to much with appearance so it's not too bad - and of course I do have some hair so for that I'm grateful.  After losing it twice to chemo I'm just relieved it grew back again.

have a good day ladies, thinking of you all xxxx

[funnyface]

Just seeing if I can post now. After I signed up again I couldn't post. Seems to be working now!

[funnyface]

Bel, Me too! I tried crutches and just going across the living room one time with them made my other knee hurt. The next day the inside of my upper arm was all bruised too. I decided it's easier to limp and have one leg hurt. My son asked me what pain killers I'm taking. I told him they're called grin and bear it. I have to be desperate to take them. I started the femara so far so good. I start the new drug ibrance on Monday. I wanted to start one at a time. I also will be off the ibrance the week of the wedding. You take it 3 weeks on 1 week off. Oncologist wanted me to start it last week and I said no that it could wait 1 week so I would be off of it for the wedding. My breathing has improved since I came off the gemcitabine. I haven't had to use the O2 . I think if I went somewhere and walked fast I would need it. I won't be doing that with my knee. I'm hoping to get it repaired before the wedding. It probably will depend on what tests they decide I need before surgery. Lol walking on thus painful leg has to be more stressful than a short surgery repair. FF

[belinda]

FF I'm so sorry to hear about your knee. I hope this is something resolved quickly.

And I hope you are soon home Jam.

Had real problems re registering on the site so if I disappear you will know why. X

[funnyface]

Jam, Hope you get out quickly! FF