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Bone mets - please join in

JulieD
Community Champion

Re: Bone mets - please join in

Thanks Jo,

As an old time user of Live Chat I can say it would be good to see you lovely women there. It is a good place to get info from BCC and other forum members but as well as serious stuff we have a laugh too. It's a comfortable place to chat once you've got used to it and we're  friendly. If you are free do come along xx

Jo_BCC
Member

Re: Bone mets - please join in

Hi ladies

 

I hope you don't mind me coming in here, and interrupting your thread, but on looking through the names of the forum users on this thread I can see that there's a lot of you who perhaps haven't tried our Secondary Live Chat service?  There's a session running this evening between 8.30 and 9.30pm where you can chat together in real time - one of our nursing team is also available to help answer anything you might need to know.

 

I've put you the link below for you to have a look at and see if Live Chat may be for you.  We look forward to seeing you all there.

 

http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk/live-chat?utm_source=Homepage...

 

Thanks

 

Jo, Moderator

Stillhere
Member

Re: Bone mets - please join in

Just to say, so sorry to hear about Helen. Gentle hugs, lovely lady, hope that you soon feel better xxx
JulieD
Community Champion

Re: Bone mets - please join in

Thanks for update Chocs, had PM'd Helen as was getting concerned, sorry to hear she's back in hospital but hopefully this time they'll get her sorted and back home quickly. Lots of love to you Helen xx

nicky08
Community Champion

Re: Bone mets - please join in

Thanks chocs for the update on Helen. I'm currently away on holiday and although able to read the posts most days it's a bit more difficult to post. However just had to add my hugs for Helen and hope she escapes from hospital soon. Thinking of Helen, Bev and everyone else who's having a tough time at the moment.
Nicky x

Lynnq
Member

Re: Bone mets - please join in

Thanks Chocolate, I noticed yesterday thst she hadn't posted for a while and remembered - like Belinda - that she said she was having a lot of pain.

Give her hugs snd love from me
Xx
edwina64
Member

Re: Bone mets - please join in

Sorry to hear Helen is back in hosp although hopefully she is getting the treatment and pain relief she needs there. Sending her hugh hugs and best wishes...she is an inspiration to all of us here xx

stresshead
Member

Re: Bone mets - please join in

Oh no...that's not what we wanted to hear Chocs but thank you for letting s know. Please give Helen my love, hugs and best wishes.x
belinda
Member

Re: Bone mets - please join in

Thank you for letting us know Chocolates, I had been worried, Helen mentioned being in pain in one of her posts last week. So very sorry to hear this. With Love. X
rosie53
Member

Re: Bone mets - please join in

Morning ladies,

Aww nooooo can't believe our wonderful Helen is back in hospital, thank you Chocolates for letting us know and please send her huge hugs and best wishes from me, I had a feeling she wasn't too good as she has been quiet the last few days.

Hugs to all Janette xxxxxxx 

Chocolates
Member

Re: Bone mets - please join in

Morning ladies, just a quick post to let you know our lovely Helen is back in hospital. She's very poorly. I'll know more later but just wanted to let you know. Huge hugs to everyone and thinking of you all.
Hxx
Jam
Member

Re: Bone mets - please join in

Thanks Marirose he's gorgeous can't wait till we see him again xx
Jam
Member

Re: Bone mets - please join in

Thanks everyone am feeling a bit better today think I was just feeling sorry for myself and wanting to be wonder woman 😊. Lynnq so pleased you had a lovely weekend too and that the children can grow up together. I have a friend that adopted 3 over a few years and they've had so much enjoyment and love as a family (they're all grownup now) as you will too. Good luck with results I try to believe that if they found anything they'd be in touch too 5 weeks is a long time to wait. Thanks too Janette enjoy your nephew they are all special. Hugs to everyone especially those that need them this week xx Janetxxo
Marirose
Member

Re: Bone mets - please join in

Hi ladies Janet congratulations of the birth of your grandson you will have lots of lovely moments ahead and if he is causing your aches then it's worth it but if it gives you a problem I should see your GP I do hope it will ease soon.x

 

Lynnq I bet you will be itching to get to know your new grandson what a lovely family gathering you must have had although it can leave you worn out. What a long time to wait for your results sending you lots of positive vibes.x

 

Welcome Dot you will find this a helpful thread.x

 

Helen we are all getting concerned for you sending you lots and lots of hugs x

 

Sending love and best wishes to all who are ill and in pain xxxxx

 

Lynnq
Member

Re: Bone mets - please join in

Hello Dot and welcome. you will find lots of support here. Scanxiety gets to all of us. I had an MRI over a week ago and am not due to see ONC for results until five weeks time. I am hoping that if there is anything untoward they will contact me before then. I am seeing GP tomorrow so will mention it to her, and may ring BCN if not heard by next week.
Hope everything goes well on Friday....
Lynnq
Member

Re: Bone mets - please join in

Hello Janet, lovely to hear about your new grandson. We also have a new grandson as well. He is15 months old and was 'introduced' to our daughter and her husband about six weeks ago for adoption. Yesterday we had a family get together at our place, since we have the biggest garden, so that he could meet the rest of his fsmily and they could meet him. Today I am jiggered.
Like you I am on Letrozole and zometa and also have the joint aches and pains. Like Julie after journeys or different chairs or really busy days I really ache more, also after my zometa infusion as well
The little one had a lovely day with his new big sister, who was adopted over two years ago , she's 4 now and he played well with all of his new cousins.
He is still a bit wary of grown ups apart from his mum and dad who he has thorougly bonded with . Our first grandson, and four lovely granddaughters - we feel blessed...
rosie53
Member

Re: Bone mets - please join in

Hi ladies, just a quick question, has anyone bought the book Cancer Cookbook by The Royal Marsden?? Just been reading a magazine and there was a recipe in it for a soup taken from the book, just was thinking of buying it but didn't want to buy something that made me feel guilty about what I eat!! Already been down that road.

Hugs Janette xxxxxxx 

lillybobs
Member

Re: Bone mets - please join in

Thanks everyone for the warm welcome..I will let you all know how my appt goes on friday. I have my routine appt this week for my treatment, I have 6 weekly denosumab, 3 weekly herceptin and 3 weekly faslodex.....had my first lot of chemo last october-paclitaxol- 12 lots, which wasnt as bad as I was expecting, had that every week and last one was january....worked well for me, and hoping things still stable. See you all soon in the cyber cafe..have a good day ladies xx Dot

belinda
Member

Re: Bone mets - please join in

Morning all, welcome Dot, sorry you have to join us but we are a supportive bunch, hope your appointment goes well this week.
Waving to Helen and wondered if Chocolates is busy with end of term stuff? Hope all is well.
X
rosie53
Member

Re: Bone mets - please join in

Morning ladies
Hi Janet, lovely to hear about your grandson, i havent got any grandchildren yet.....can't wait!! With regards to your pain, i have a new nephew and i have noticed when i have been holding/rocking him i suffer later with my back (mets in spine) i didn't feel i was straining my back at the time but the pesky mets obviously didn't like it!! Just see how you go over the next wk or so.
Hi Helen, hope your ok, and that dreaded pain isnt playing you up too much, we miss you so much when you don't post. Also Chocolates, are you ok??
Love to all Janette x x x x
Jam
Member

Re: Bone mets - please join in

Thank you JulieD have put my mind at rest. Think I was having a blip cos everything lovely at mo. Why does the dark bit have to sneak in grrrr. Thanks to you and Edwina Janet is back and fighting 🙋🏻🌞xx
Marly
Member

Re: Bone mets - please join in

 

JulieD
Community Champion

Re: Bone mets - please join in

Janet, it's lovely to hear about your little one, what a lovely weekend! Shame it has a little cloud of doubt because of pain. I know when I've done car journeys, sat in different chairs, done things I'm not used to I do get extra aches and pains. I generally up my meds, try to be a bit more gentle with myself and see if things calm down. If there is no improvement in a week to ten days I then take action. Hope things settle and it's just extra/unusual movement from baby carrying etc xx

Jam
Member

Re: Bone mets - please join in

Thanks Edwina. I've been on letrozole for 2 years and zometa every 4 weeks just changed to 6 weeks and had the first 6 week one last week. Do have aches with letrozole and now have the ones with least SEs for me. The pain is in new places. My scan was April and not due for ages again. Can't wait to see what character our little man is going to have. It must be great with yours now. xJanetx
edwina64
Member

Re: Bone mets - please join in

Hi Janet I have been having rib pain especially where I had radio 18mts ago and in shoulders. After my scan in March onc said my bones were ok (on desonub) I was v surprised ad convinced cancer was moving on in my bones so I said 'really?' She said sometimes the medication gives you bone pain so it is hard to differentiate.  I am on e/e which has a hormone pill similar to letrozole which gives you aches. Enjoy hour new Grandchild my little one is 2 now and has managed to make me smile every day despite all the worry cancer brings. He is old enough to say  'love you Nanny'..brilliant !

Jam
Member

Re: Bone mets - please join in

Evening ladies have had a fantastic weekend with our son,wife and new baby he's gorgeous. Don't want to winge but am going to. Have been having a few aches and pains in ribs and hips the last few days and getting a bit paranoid. Have been concerned about being able to carry baby but wasn't as big a problem as I thought. Do you think it's cos I'm using my body differently lifting baby rocking him etc plus traveling and to give it a few days to settle or make appointment to see Dr. Ibuprofen and paracetamol don't seem to be working for very long and co-codamol isn't much better. Have bone mets spine sterum now worrying about ribs. Your opinions will be much appreciated as don't want to discuss with family at mo. Love Janet xx
Marie123
Member

Re: Bone mets - please join in

Good afternoon ladies, welcome to the newbies, sorry you are joining us, but I must say the support, friendship and good advice I have found here has helped me so much.

Janette I feel like you I don't want to go for a 'c' coffee morning. most days I don't want to think about it, when I do I prefer to come on the forum. However, I must say that reflexology is proving a hit.

Helen I hope you are okay and not in too much pain .

Thank you Miss Marple for keeping an eye on all of us.

Sending positive vibes to all having treatment and scans this week.

Take care

Hugs

Marie xxx

JulieD
Community Champion

Re: Bone mets - please join in

Hi lillybobs,

 

Good to see you posting and hope we'll see you in the cyber cafe.

 

I was dx primary in 1999 and mets in 2010, so quite a gap too! My mets are spine, ribs, sacrum, shoulder...Zometa and Femera have so far kept me stable. Had some rads when first dx with secs. Had my most recent scans a couple of weeks ago and get results 6th July, bit of a wait but trying to forget about it till nearer the time.

 

Hope all goes well Friday. xx

rosie53
Member

Re: Bone mets - please join in

Hi Dot, welcome to the forum, sorry you have had to join us though. My mets were also dx 7yrs after my primary, mine are in my hips, ribs and spine, I don't think "scanxiety" gets any easier unfortunately, I have my next one 1st July plus tumour markers and see onc for results 16th.

Please feel free to ask us any questions or concerns you may have, there's always someone on hand to answer.

Hugs Janette xxxx 

lillybobs
Member

Re: Bone mets - please join in

I should have said that my primary diagnosis was 2006 and bone mets diagnosis was 2013....oops! x

Jo_BCC
Member

Re: Bone mets - please join in

Hi Lillybobs

 

Welcome to the BCC discussion forums where I am sure your fellow forum users will give you all the support they can and help you through this.  If there's anything you want to ask, please don't hesitate as there's always someone around to help, plus our helpline team are just a free phone call away for that added support.  Calls are free 0808 800 6000 lines open weekdays 9-5 and Saturdays 10-2.

 

You might also like to join in our Secondary Live Chat service which runs every Tuesday evening between 8.30pm and 9.30 pm where you can 'talk' to others in a similar situation to yourself in real time.  I will put you the link for you to have a look at and see if you're interested.  You'll be made most welcome if you decide to pop over for a chat.

 

http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk/live-chat?utm_source=Homepage...

 

Take care,

Jo, Moderator

lillybobs
Member

Re: Bone mets - please join in

Hello all..am new to this site so I'll apologise in advance for any mistakes coz I'm not brilliant with technology! Its taken me a long time to pluck up courage to post, although i have followed your posts and got much inspiration from them. I think you are a wonderful group of women and have decided that i would like to join you all(especially in the cyber cafe!)..my bone mets were diagnosed 7yrs after primary- pubic bone, spine, couple of spots on sternum and shoulder..am ok at the moment, all stable at last scan in january..next appt is this friday (26th) had tumour markers done couple of weeks ago, so will wait now to see what next move is...feeling the scanxiety already and havent had any scans yet! Hope all you ladies are well today xx Dot

Marirose
Member

Re: Bone mets - please join in

bill-ben I know the feeling when you try to do too much space the work out and listen to your body rest when you need it take care xxx

Marirose
Member

Hi everyone include me in the weak bladder club can be wo...

Hi everyone include me in the weak bladder club can be worse after taking my cancer tablets every 20 mins for the hour after and regular through the night. 

bill-ben don't get paranoid about morphine for pain I had it after my first month of treatment when my mouth was so bad and listen to Belinda she has alot of experience through her years with secondaries. As for pain we all get it from time to time in my case I never know if it's my M.S or the se's I am interested to see so many on the drugs I use for M.S. All the best to everyone going through pain xxx

belinda
Member

Re: Bone mets - please join in

Good Morning Gracie, I had noticed you were a little quiet here, hope you are just too busy with life, Love Belinda. X
Hi Bill-Ben, I was on morphine, OxyContin and Amitriptylin about two years ago, for pain, but now, at the moment, I take nothing. Don't look, as I did, on the heavy stuff as necessarily being a permanent feature. I'm in the weak bladder club too. 🙂 x
bill-ben
Member

Re: Bone mets - please join in

Morning ladies. Oh how I agree with the aches and pains I sometimes feel I'm getting paranoid when I think every niggle is something nasty.I have been having a problem with my ribs lately. Fine most of the day if I don't overdo the gardening (which is difficult as we have just moved and I am itching to get it sorted) but pretty painful when I try to get into bed and lay down and for the first few hours. My new GP has given me some morphine based liquid but as you will understand my brain is going "morphine that's a bit final!". My mum was on a morphine pump during her last days of bowel cancer. I only take it at bedtime as I'm scared of getting hooked on the stuff but luckily so far have only had the odd time when I have to take it other than bedtime and that's been my own fault with the gardening! As for you ladies with the bladder problem I know how you feel. I have never been the same since given birth to 3 large babies even if it was a long time ago but since my diagosis it has got considerably worse. I now take something from the doctor called Vesicare which helps with the problem.Of coarse it could be an age thing but just thank god for Tena Lady!!! Hope you all enjoy the rest of the weekend and have better weather than we have here in North Devon lots of sea misty/foggy stuff about.

funnyface
Community Champion

Re: Bone mets - please join in

Belinda...Thank you for thinking of me. The pins arrived. Great design! Hugs Gracie

Elily
Member

Re: Bone mets - please join in

Janette - I thought there would probably be another with similar readings! Fortunately my bladder is OK so not too many trips to the loo at night (leave that to the old man!)
rosie53
Member

Re: Bone mets - please join in

Elily, my scans have been stable but my TMs have also been rising, onc said that she wasn't worried though so I try not to let it worry me.

Vicky, my bladder has gone very weak too, I must get up about 4 or 5 times through the night.....its driving me mad I'm a terrible sleeper as it is.

Quick wave to Helen 👋

Hugs Janette xxxxxxx 

belinda
Member

Re: Bone mets - please join in

Afternoon all, 🙂 those aromatase inhibitor hormonals give you so many aches, pains and stiffness too. I'm two months into Letrozole and had forgotten how stiff and achey you can be on these. X
Waving to Helen, had noticed you had been a little quiet lately, hope your pain levels are not rising again? Know you put up with so much pain already. No pressure to reply though Helen. X
Elily
Member

Re: Bone mets - please join in

I have bone Mets and a scan back in April showed that they were well under control, but my TMs keep rising. I'm on Cape and feel pretty well (work full time plus 4 hours daily commute, plenty of social activities (not too great on housekeeping though ...)
Anybody else had similar? Onc is not changing my treatment as my blood/bone marrow is improving every blood test. He's organised another scan for week I see him next (3 weeks time) to see if that shows anything.
aunico
Member

Re: Bone mets - please join in

Hi I'm doing the same with aches and pains. I'm sure my bladder seems weaker as well. I have recently finished some radio on my spine and come off steroids so am feeling the aches and pains. I'm using my arms to prop myself up so my arm muscles are aching but paranoid moments do happen. 

 

Vicky

rosie53
Member

Re: Bone mets - please join in

Hi SSue, totally understand how your feeling, I was exactly the same  (dx with mets last year) every little ache and pain I convinced myself that things were progressing and was constantly on the phone to my bcn, on my last onc appt she explained to me that just because you are feeling a few more aches and pains some days it doesn't necessarily mean that it is getting worse, it's the nature of the illness and unfortunately we will get more pain some days, which has made me feel a lot better and put my mind at rest a little. Don't get me wrong I do still have my worry days but I don't get as paranoid as I did. Hope this helps 

Hugs Janette xxxxxxx 

scoobiesue
Member

Re: Bone mets - please join in

Ladies how do I stop myself from dwelling on every ache and pain and convincing myself that the mets are increasing. Newly diognosed and I think quite rational most of the time. Have a good weekend. Love to all SSue

stresshead
Member

Re: Bone mets - please join in

Hi Corinne, thanks for the info. I have been trying to take photo's myself but only on a camera phone so they're not brilliant. Scare myself every time i look, convinced there are new 'spots' appearing. One moment i think..'oh the redness is fading' the next i look at it seems as bad as ever. I'm still very lumpy too.

Forgive me if i'm wrong but did you say you had had a line put in and was asking about swimming?

First let me say how brave you are to take your children on holiday. I totally get that you need to carry on as normal as possible and push this awful disease to the back of your mind and i totally admire you. Dont know why i've just said 'brave' cos whenever anyone says it to me i say 'i'm not brave.... have no choice'. How i wish we had!!

Anyway. yet again we find orselves in the same position. I had a groshan(?) line fitted and asked the same question. I was told swimming was a no-no. I even thoughtit may be possible to get a big waterproof dressing and stick it over the'proper' dressings and perhaps just paddle?? trouble is i woul dworry in case anything went wrong and i couldnt get help...but thats me all over. If you do find any info about that product you mentioned i'd love to know. I'm sure you'll sort something and am certain you'll have a fantastic time...youand your family deserve it.

ps did you have any problems with insurance when they knew you had a line? x

stresshead
Member

Re: Bone mets - please join in

Well said Natalie and Nicky. Welcome Chick but sorry you've had to join us. This forum is often a haven in a very scary place.x
stresshead
Member

Re: Bone mets - please join in

Tink, so glad to see you've had a change of heart.x
rosie53
Member

Re: Bone mets - please join in

Morning ladies,

Nicky I agree with you, I would be lost without this forum, it's given me so much support and answers since being dx with mets last year.....you are all my special friends and my lifeline!!!

I have stopped going to the cancer day care centre, although they are wonderful people and they do great things it's not for me, I felt like it was "cancer day" and made me focus more on the disease. I get much more comfort and strength from you ladies on here.

Hope you all have a lovely weekend 

Take care hugs Janette xxxxxxx 

nicky08
Community Champion

Re: Bone mets - please join in

Hi Chick
Glad we are helping you 😊
It's a very frightening, and lonely, place in the real world with mets as you generally know of so few ladies that have it and information is based so much on primary BC. Joining this forum 7 or so years ago when I had my bone mets diagnosis was the first ray of hope I had as well. The knowledge we all share is invaluable and the support is fantastic. There's always someone there to help so I hope you join in as and when you want to and you can say things on here that friends and family can't help with or you don't want them to have to deal with, we all understand.
Nicky x

Tinkerbelle
Member

Re: Bone mets - please join in

Hi 2ndtimeunlucky,

 

I have mets in pelvis, spine and skull and in both lungs.  FEC can be good and sort the uggers out.   Glad you're feeling a bit better.  Once you get 'used' to it feels more doable.  Anything you want to know just shout out.

 

Thanks for your kind words Springsummer.

 

Tink x