Bone mets - please join in

[spudlab]

Helen

thanks for the welcome.

I don't need bone strengtheners at the moment. The scan picked up the met in May and when they look back at my scan from March it was actually there with the benefit of hindsight. It appears "healed" on the scan in May so it has responded to treatment. My oncologist sent the scans to the local neurosurgical unit for an opinion and perhaps a biopsy. It is not a good place to biopsy as it could cause spinal cord damage and I wouldn't know it was there if they hadn't seen it on a scan. There is debate still as to whether it is a bone met but the radiologists are certain and the oncologist can't explain what it is if it isn't!

I have actually seen a rheumatologist because of my joint pains and he contacted my oncologist about denusomab but we have decided to wait. 

I am actually steadily working my way through the hospital specialists! So far I have seen:

oncology and breast surgeon- obviously

dermatology - nasty rash from taxotere

respiratory - small lung nodule and then an acute allergic reaction in my lungs from the taxotere causing me to be breathless going upstairs

rheumatology - joint pain. Probably due to the forced menopause and the steroids now having stopped

family planning clinic - failed attempt at copper coil insertion!!!

Now waiting to see plastic surgeon for reconstruction and ENT because of tinnitus and hearing loss!!!

Still at least I know my way round the hospital.

The work decision is complicated by the fact I am in the armed forces and whilst I don't want to sound pessimistic the death in service benefit is good but on the other hand so is the pension and do I want to continue working all the time I am well and then regret it when or if I get ill.

Sorry to ramble on!!!

[2catlady]

Hi,spud lab,yes of course you can join us. As you can see we are a very friendly bunch and support each other. The ladies on here have kept my head above the water many times.
I was like you diagnosed with double whammy of primary and bone mets last June,but unfortunately I've had progression to lung & liver about a month ago.
As for work it's a totally personal choice ,some ladies work as it helps them keep normality . Myself,I retired through ill health this June as I wanted time with friends and family.
Most of the bone ladies are on some sort of bone strengtheners so if I were you I'd ask about that.
Mind,even though we are friendly you will have to go on a waiting list to borrow Mr George Clooney .
Huge hugs,Helen xxxxxxx

[spudlab]

Can I join in please?
I was diagnosed with breast cancer in November last year. I had left mastectomy and axillary clearance in December. I had FEC-T commenced in January. I started radiotherapy in May and on the day I started it found out I had a bone met in the top of my thoracic spine. I am triple receptor positive.
No symptoms just found on a scan. Was shocked and upset to start with but always new I was high risk - grade III tumour, big tumour and lots of nodes involved. Stopped working then but hoping to go back next week. Worked through my chemo. My husband works overseas and my son was boarding so was home alone. Work was good for me.
I travelled 3 days after finishing radiotherapy. I have since been to Turkey for a week and the Caribbean for another 2 weeks.
Currently struggling with what to do about work. I could be medically retired next March but could ask to stay. I seem to change my mind every day. My repeat scan in July showed no new mets.
I am currently on tamoxifen and herceptin subcutaneously but nothing else.

[2catlady]

Lol chocolate,Mr C has my shopping to do tomorrow and lawn to cut. ( I'll not get the parasol out ,promise )He'll be at yours on Sunday,so line up the jobs. Apparently he's great at marking science homework as he was a doctor lol xxxx
Enjoy your cuppa Belinda with Mr C. Oh,a biscuit too,you're spoiling him xxxxx

[belinda]

Thank you chocolates, GC is hoovering the stairs for me at the moment. 🙂
I will send him on his way soon, after we have had our usual ten o'clock cup of tea and a digestive together.
Hope you all have a good weekend. X

[Chocolates]

Pressed post too soon, just wanted to say hello to everyone else. I just love this forum - gives me such strength. Tracey have a lovely holiday, Bev hope all is well in Tenby and to anyone else going away have a lovely time.

Huge hugs ladies,

Hxxxx

[Chocolates]

Hi Ethel - yes I'm a teacher. Pm if you like - happy to answer any questions etc - school have been very supportive and let me work when I want to. You are protected under the disability act and you will need a care plan in place but this is all doable and actually helps I think to make things easier at work.

Helen - I'm going off you - sending gc over to Belinda. What a rubbish weekend I'm going to have now! Only 5 rads left - that's fantastic. Sorry to hear about sickness though - can't be pleasant. Not long till you're off to magic land so fingers crossed everything continues as well as can be expected so you can go.

Lynn so pleased you're having such a wonderful time. We've been twice - disney never disappoints does it. Enjoy your last few days and I hope your journey home is a safe one.

Janette - hope you are doing ok and feeling a bit more positive - you did the right thing ringing bcn. Our minds have a lot of fun with us don't they - I really need to switch mine off sometimes - if only I could find the button.

Sheila - if you're reading this sending you massive hugs. As Helen says let us know as soon as you can how you are. We are missing you very much. xxxxx

[2catlady]

Good morning lovely ladies,
Waving to Lynn across the pond. I told you Mickey magic is just what you need. So glad you are having a fantastic time. I bet your grandchildren are loving it too.Four weeks tomorrow for me,yippee

Chocolate,so glad heart settled. Don't work to hard and wear yourself out .it a very long term this one and a busy one! I hope you very gentle with Mr C as it's Belinda's turn today.xxxxxxxxxx

Sheila ,we are getting very worried about you. Please let us know you are okay as soon as you can xxxxxxxxxx

Tracy,hope you are fighting fit now and all ready for your holiday xxxxxxxxxx

On to last five rads yippee! Doctor said I'm the 1% that rads on chest makes you sick lol trust me.
Huge hugs to everyone ,Helen xxxxxxx

[Bevlaar]

lynnq....living the dream! Fantastic. Bet youre having a brilliant time! Its so hard to take those final steps and actually plan a holiday. ..well for me anyway..bit scary but I'm hopefully optimistic I can book our planned week in November in Jumeirah beach Dubai . Results of first scan since starting capecitabine on 1 july for lung mets but been quite breathless due to small amount fluid.
You enjoy....I'm very envious! 😉
Lots love. .bev xxxx

[Ethel_horner]

Hi chocs, are you a teacher? Are you working full time? I'm just diagnosed with bone mets and don't know what to do about work. Ethel x

[Ethel_horner]

Hi lynn yes that's me, I hope to be inspired by the girls here too. Your post is perfect! Thank you ethel x

[Lynnq]

Greetings ladies from sunny Florida. Will probably pass you in mid air Helen!,,

Been reading your posts every couple of days but when I try to respond I keep losing signal....

Feeling really well the sunshine, pixie dust and Disney magic must be kicking in. Can!'t believe how much walking I am doing.

For all of you ladies wondering whether to go on holiday go for it.......sorry to hear about our newbie friends. So pleased you managed to get rid of your nasty old BCN and ONC Helen.

Ethel.....did you used to post on Macmillan....your name is very familiar to me.

On the way home on Saturday....when I had to cancel my holiday 2 years ago due to double whammy never thought I'd make it but.....here I am!!!

So chin up to all.....especially our new folks.......

Will catch up properly when I am home.......

[Chocolates]

Evening everyone. Well my heart is a lot better today so that's a big relief. Hope everyone is ok?

Sheila - I'm really worried about you and just wanted to let you know you are in my thoughts and prayers. Please let us know when you can that you are ok.

Busy getting myself ready for term start next week. Been into work today and in again tomorrow. Why is there always so much to do. Never mind George is keeping me company so can't complain.

Huge hugs everyone,
Hxxx

[2catlady]

Good morning ladies,
Janette,glad you got BCN involved,hopefully you will get an answer today.
Regarding pain meds. I got a letter from my GP and all it says is :to whom it may concern. This lady is a patient at my practise and needs these meds for back pain ( never mentioned the cancer)zomorph,oromorph And diazepam , I packed the oromorph in case as liquid. But the rest were in hand luggage with enough ibuprofen and paracetamol. This was for USA and no one questioned me about pills. My GP didn't charge me either. If you are just on normal pills you probably don't need a letter. But if you are on narcotic pain meds I would defiantly get a letter from GP. Hope that helps xxxxx

Tracy,glad you are on the mend and on track for hols,double yay! Xxxxxx

Bev,glad everything went okay,now it's the waiting which is always hard xxxxxx

Now chocolate,we will wear the poor man out. Belinda has him first,then me ,now it's your turn lol be gentle with him.lol
Hope you are feeling okay today.xxxxxx

I hope everyone else is fighting fit and kicking Cs butt. Sending you all huge hugs,Helen xxxxxxxxxx

[Chocolates]

Can I just point out that Mr George Clooney is all mine and I don't like to share!! Good night all xxxx

[Bevlaar]

P.S Helen....give my love to mr Clooney when you see him 😉😉💖

[Bevlaar]

Desi..glad to hear youre on the mend and hopefully be ok now for that holiday! Scan only took mins...thoracic area abdomen and pelvis.Results next wed xxxx

[Bevlaar]

Thanks helen...scan went fine although they had the usual difficulty of getting the line into a vein first. Have a fab fab time with Mickey Minnie and the gang!
Best thing in the world for you!
Mwynhewch!....enjoy xxxx

[Desi-2]

Hi Helen I'm feeling much better thanks the cold is on it's way out Yay!! Hope to stay well for my hol and be well enough for the chemo when I get back. Hope your getting plenty of rest, not too long now until your off now either is it?
Hope everyone has a restful night and hope you got good news Bev xxx

[rosie53]

Hi, just to let you know my bcn rang me back and iv explained about the pain, my onc has a clinic at my hospital tomorrow so she is going to speak to her about it and ring me back.
Can i also ask you lovely ladies about taking meds abroad, do i need a letter from my GP? My GP says i dont but the NHS website says i do???
Thanks Janette x x

[2catlady]

Hi,janette ,if you have just had a scan it's very unluckily to have progressed that fast. You may just need your pain meds tweaked.
Hope you get an answer quickly to put your mind at rest xxxxxxx

Porkie,thank you xxxx yes,my cases are all packed. Sooooo excited now. I'll have to put Mickey ears on my croc avatar lol

Hope all went well Bev,thinking of you.xxxx

Hi,Tracy,hope your pain settles soon. Apart from that how are you doing?xxxx

Huge hugs to Sheila,missing you on here xxxxxxx

Massive hugs to everyone ,I'm off to bed now,( for some strange reason George Clooney features in my dreams now,hee hee thank you Belinda xxx)Helen xxxxxxx

[rosie53]

Thank you Helen, H and Desi-2, have phoned bcn and shes in clinic at the min so waiting for her to call back, im hoping its just a blip as i only had bone, CT scan and tumour markers last month and all were fine and markers down by half...or can things change so quick????
love Janette x x

[Porkie]

Hi Janette - I would ring - you will get pain meds then and reassurance that ok to go away without worrying. I have always found the oncologists helpful for slotting you in in these circumstances. Helen - I think you are amazing - you are always so upbeat - thank you. I am so pleased you are over half way with rads - once you have finished it will nearly be holiday time! Ethel - I was exactly the same as you so can fully understand how you feel. I didnt tell anybody apart from very close friends and family when I had my double whammy diagnosis 3 years ago. I just wanted to coninue normailty and when I was on hormone tablets there were no obvious signs but when I had to have chemo I did tell everybody and they were all supportive. This worked for me but everybody is different so I think it is what is right for you. Best wishes to you all. xx

[Desi-2]

Janette I'm in a similar situation I've had sudden onset of pain over the weekend I'm going away in a weeks time I've decided to see my GP for pain relief as my chemo starts when I get back and will see my onc aswell. But I do know I've had progression in these areas of pain. I've also had a recent scan so they are saying it's not bad enough to be at risk of fracture. I think you should look into it or at the very least get adequate pain relief so you can enjoy your break. Xxx

[2catlady]

Hi,ladies,
Chocolate,I know exactly what you mean xxxx I hope you get some answers soon .
Rads going okay,but will be glad when it's over as totally exhausted and very sore. Cap ,so far so good,touch wood. Feel like I could sleep for a week,but can't 😞

Ethel,I've not had any problems telling people. Yes,my friends were upset but I think that's natural as we are very close. We talk about it when I want to ,otherwise we don't mention it and get on doing nice things. People will get upset because they care about you and that's natural. If they can't handle it or have a problem with it you probably don't want them around you anyway.
Enjoy your little smashers xxxxx

Huge hugs,Helen xxxxx

[2catlady]

Hi,janette, yes ring now,you can get a blast of rads before you go away.
Huge hugs,Helen xxxx

[Ethel_horner]

Hi everyone! I have just been for a three mile walk with a friend and didn't tell her about my secondaries because I couldn't bear to see her reaction. How did you manage the reaction of other people? I so hated that head on the side posture when I was originally diagnosed. Now have my feet up while my little smasher plays next to me on his Xbox - living the dream! Ethel x

[Chocolates]

Janette - ring now. You will still be able to go away I'm sure but it will stop the worry which sometimes is worse. Ring your bcn and talk to her - two weeks is plenty of time to get a few checks and get the right treatment before you go. It'll be worse and more frightening for all of you if you go away and then are suddenly crippled with pain. That will definitely spoil the holiday. You've not been yourself recently so I think you should do it now.

Huge hugs,
Hxxx

[rosie53]

Hi ladies, please can i have your valued opinions!! I still feel mets are giving me more pain than usual, the wiser part of me is saying ring your bcn and see if she thinks its "normal" but we are going to Gran Canaria in 2wks and i don't want to spoil things for my oh and daughter (i havnt told oh about the pain) keep trying to ignore it but it is getting me down as i was doing really well with hardly any pain!!!
love and hugs a frightened Janette x x

[Chocolates]

Afternoon ladies - well I rang my hospital this morning and said heart still not right. So had an echo and ECG - both of which look fine. The finger therefore is now pointing firmly at the adcal so not taking anymore for a couple of weeks to see if things settle down a bit. In my mind it's a catch 22, if they found something wrong then at least it would explain what is happening and hopefully treatable, but if they didn't then what is going on. Alas I find myself in the 2nd answer and so still a bit nervous about it all. Nicky - I will pm you later as have a few further questions if that's ok? So for now I sit and wait ........

Hi everyone - Jeanette so pleased you're feeling a bit better. Remember to take each day as it comes.

Sheila - how are you - I'm thinking about you often so hope you are improving still xxx

Faraway - how you keeping - hope yours not working too hard.

Bev. hope scan went ok - have a good time away with your mum. Fingers crossed the weather holds.

Helen, thank you for burning your parasol - lovely weather here today - washing now out and still warm. Hope rads ok today - how you coping with cape on top? Sending you positive vibes.

Hello to everyone else - much love to everyone. You are all such a strength and support.

Huge hugs,
Hxxx

[rosie53]

Morning ladies, the sun is shining in Manchester today!!
Hi Helen, half way through your rads thats good and you still have your trip to Florida to look forward to yet.
Hi Chocolates, how are you today?
Hi to Shelia, hope your ok flower have been thinking about you.
Hi Bev, good luck with your scan, hope you got a good nights sleep the mind can play nasty tricks on you remember they are only dreams they mean nothing.
Hello to Pam, Mavis and everyone else i have forgot to mention hope you all have a lovely day.
Love and HUGE hugs Janette x x x

[2catlady]

Good morning lovely ladies,what a busy thread !
Chocolate,huge hugs,hope heart gets sorted. So glad you had a great holiday.xxxxx

Bev,good luck today ,will be with you holding your hand xxxxx

Oh,Kimi,sounds bliss ( not the work or zap bit lol) xxxxx

Janette,glad,you are feeling a bit better xxxx

Oh ,I keep losing place with thread,I'll not try to answer everyone,sorry ,but I'm thinking of you all xxxxxxx

Belinda,I did wonder if it was ears,I'll see my GPxxxx

Sheila,thinking of you xxxxx

Well half way through rads,yippee. And it's sunny in the NE double yippee.
I'll catch up later with everyone.
Huge hugs to all our newbies and everyone ,Helen xxxxxx

[pam01]

Lovely to chat to you julie....sleep well Bev!.....Good luck Kimi jealous of your break! sounds great.xx

[Homer]

hi girls,

i escaped last week after chemo, hubby picked me up from the hospital and we went to Devon for 4 days

it was great to get away and feel normal... well as normal as i will ever be!!

the weather was kind to us too, it was lovely & sunny.

we walked on the beach eating ice cream, drank beer in lovely old pubs & sat watching the sea

Then today bang im back at work followed by an afternoon at the hospital,

as they are thinking of micro waving me again LOL

kimi x

[Bevlaar]

Oh thanks julie thats very kind. Yes inane dream...put it behind me now. Just had nice shower and come to bed early...thanks again for your kind words xxxx

[JulieD]

Bev, just got off of livechat, was quiet tonight though we were joined by the lovely pam - waves to pam. So sorry to hear how down you feel and about your horrid dream, blasted scans can really get to us. I hope all goes smoothly tomorrow and you don't have to long to wait for results. Hope you have a better night tonight. Will be thinking of you xx

[Bevlaar]

Thanks pam...weather's a bit brighter down west I think for rest of week. Will be good for me xxx

[pam01]

Goodluck with your scans tomorrow Bev...good idea to have a holiday to take your mind off whilst waiting for results...hope weather picks up...tenby should be lovely!xx

[Bevlaar]

Evening ladies. ..will miss you on livechat tonight...few things to see to...breadmaking not one of them i may add! 😉
On a bit of a downer today...think j had meltdown with first scan being tomorrow.
Had really restless night waking on and off and had wild dream of me being in a huge egg timer with the sand slipping away beneath me. I was frantically clawing at the sides to stay up but the glass was too smooth.....aargh!
So. ....no prizes for being able to translate that one!!

But Pam..bc-lass and porkie...youve really lifted my spirits reading about your travels and plans.
Thank you for that xxxxx 💖💖

[SDP]

I have letrozole alongside herceptin and perjeta (plus zoladex injections as haven't been through the menapause).  oh and denusomab for good measure xx

[carolsav]

Hi everyone. I was interestd in the discussion on pain levels. I have bone and lung mets ans takem mst paracetamol and oramprph which really helps but i am also on letrozole andget really bad stiffness in my joints...particularly fingrs ans wrists. Anyone else gave this problem? PS my onco doesnt even seem concerned bout my lung met..does this seem normal lol?
Lovely to read all the posts and know im not alone in this. X

[rosie53]

Hi Chocolates, i'm at the hospital at 7 this evening with my oh but if i am back in time for live chat im going to give it a go. PS feeling a bit better today thank you, i got myself some Kalms and i think they helped me a little.
Love Janette x x

[Porkie]

Good afternoon everybody and welcome to the newbies - I am sorry you have had to join but I have found the site a godsend, everybody is so welcoming. I do not post very often but always read everybodys posts which gives me inspiration and hope. I was diagnosed with primary and mets to bones over 3 years ago now and like Pam have continued to enjoy life with the cancer travelling to Australia and Japan since diagnosis. I no longer work but keep myself busy with volunteering - almost a full time job at times! Following progression to lymph nodes in chest I have had 6 rounds of chemo plus herceptin and perjeta. The treatment finished a couple of months ago and the end of treatment scan was very positive with no activity seen in bones or lymph nodes although there remained a little fluid still round my lungs. I also felt very good with no pain. Treatment continues as herceptin and perjeta although I am no longer on denusomab or any hormone tablets. Over the last week or so I have started to have pain in my ribs and around my neck so think probably herceptin and perjeta is not working totally. I just wondered whether any other ladies who are on herceptin / perjeta have this on its own or whether they also have a hormone treatment. I am due to see my oncologist again in a couple of weeks so collecting as much information as I can. Thank you ladies and best wishes to you all - you are all amazing!xx

[Ethel_horner]

Thank you Ethel x

[nicky08]

Hi ladies and a warm welcome to anyone newly diagnosed. There is a lot of acrtivity on this thread at the moment and it's great to read what everyone has been up to and feeling sorry for all those with a few extra hospital visits or even overnight stays - not what we need.

I seem to miss out on all the late posts in the evenings so I apologise for not rememebering everything!

Helen - glad you ahve moved hospital and hope Cape works well for you. I also got a few desperate dashes for the loo at times whilst on it but it did settle down and didn't really cuase any problems.  I found in the first couple of times on my week off I also suffered with diarrohea (sp?) on the first day off tablets but, again this didn't happen after those times.

Chocolates - do keep an eye on your heart and feel free to PM me if you want any info about what I had. It was definitely brought on by chemo and has taken a long time to sort out.  I see one of the best (if not THE one) cardio-oncologists in the UK and he has worked wonders 

Belinda - I do have to smile when I read your posts  George Clooney - what are you like? I can just imagine you staring out of your window, downing tablets whilst George is pottering in the garden LOL

Take care all other boney and other ladies, sorry if I've fogotten too many ladies.

Nicky x

[Chocolates]

Morning lovely ladies - it's sooooooooo cold! What happened and so damp also. Going to put the heating on - just for a bit.

We had a lovely weekend with the family. My heart is still not right - just don't feel quite right but difficult to explain. Maybe I'm just thinking about it too much as no pain etc so not really sure what it could be. The only thing is it started after taking adcal so have stopped for the moment to see what happens.

Ethel - huge hugs to you - we know exactly the place you're in at the moment. It's so difficult and all consuming. Things do get better but at the moment you just need to take one day at a time. Give the lovely ladies here at bcc a ring - they are very supportive. Huge hugs and keep posting. We are here for you.

Sheila - I really hope you are starting to feel better now. You've had a difficult time recently but we're all here.
Helen, sorry to hear about your dizziness - I agree I think it could be a near problem so get it checked out. Hope rads go ok today.
Natalie - huge hugs to you. Sorry to hear you've been down. Do you think you'll be able to make live chat tonight. It would be good to catch up.

Sorry if iv missed you out but so many posts to catch up on from the weekend. Have missed you all ladies and sending huge hugs to you all.

Hopefully speak to some of you on live chat later.

Take care,
Hxxxx

[rosie53]

Hi Pam, what a wonderful post...thank you, iv been on a downer this last wk as had more pain than usual and posts like yours makes me feel so much better!!!
Love and hugs Janette x x

[bc-lass]

Thanks Pam - I love your attitude and great to hear about all your travelling! I have just come back from a cruise around the Adriatic which was lovely.

[belinda]

Hi everyone, still raining here! Helen I wonder if it's an inner ear problem? I've not had a mast, years ago if stage 4 from the start it was normally left, but thinking of rads if you are having to keep arm raised, in a strange position might it have caused some inner ear problem? Dizzy when turning over is usually ear problems I think?