67.8K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

JulieD
Community Champion

Re: Bone mets - please join in

It is so good to see your post and to know you are home! I´m sure you've lots of tales for us. At the moment just rest and enjoy being home. Welcome back! xxxxxxxxxxxxx<3 xxxxxxxxx

 

2catlady
Member

Re: Bone mets - please join in

Good morning lovely lady's im home. A massive hug to everyone ,your posts have been a God sent and your good wishes and love have meant to world to me xxxxxxxxxxxxxxxxxxxx

So saddened to read about our lovely Chris. Its knocked me for six as she was doing so well.

I got home about seven last night,yippee. Pain is bad from rads,didn't expect It to kick in so soon but I kept that quiet and got home.ahhhh bliss.
I must admit the nurses and beige dresses staff( not sure of job title ) were lovely. On nurse really scary even other nurses scared of her lol!
Never got to see my onc on ward apart from we bumped into his on Monday in downstairs cafe and he said oh,your still in,I only found out on Monday! Oh you are out of bed walking that's good!! Didn't know I had spinal compression then.This was blatant lie as the week before I had an appointment in out patients with him and Rachel's onc said ive just been down to talk to Dr💊 and tell him your in he may pop up to see you!
Any way I've been seeing his reg who is very on the ball( don't know name,apart from has ginger cropped hair and beard) but very nice man. I did say to him Dr 💊is nice but dozy at times and he smiled at that. I said you need to keep kicking him subtly and he said he would lol.
Well ,I have poo gate to tell you about an the physiotherapists who had to come in a pair to see me after first visit !!!! I'll leave those to later.
A huge thank you to you bunch of wonderful ladies ,you give me strength and I love you all,massive hugs,Helen xxxxxxxxxxxxx
Porkie
Member

Re: Bone mets - please join in

Thank you Belinda for this sad update xx

belinda
Member

Re: Bone mets - please join in

Dear All, Chris, Steris, has posted her update on my weekly Taxol thread in the Treatments forum. She is now in a hospice and believes, has been told, she has 4 weeks. I am hoping she may return there to read any replies so if anyone wants to send their love to Chris, Steris, I will post the link here,

http://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/Anyone-had-weekly-Taxol/m-p/91...
LemonDrizzle
Member

Re: Bone mets - please join in

Chocolates, again thanks for the update about Helen. You're all right this has been ignored for too long - it's ages since she first mentioned it on here. At least she can move forwards now with the rads then sort out her pathetic care and even more pathetic onc. Fab to hear H&P still working well. When you say you've got a break before you see him again can I ask how long - being nosy really!
Sheila's, hope the shopping went well and you can enjoy the weekend before rads on Monday.
Julie, I missed all the excitement of the eclipse today, as I was at Christies at that time - typical isn't it, the one day it happens and I'm attached to machines and not even near a window to look out of. At least some of the photos look good.
Hope everyone can enjoy the weekend
LD x
JulieD
Community Champion

Re: Bone mets - please join in

Thanks Chocs for update, I am so angry at Helens Onc, right back at the start of her pain I was worried about compression so why on earth wasn't her Onc!?! I hope when she is better and has the strength that she will make a complaint and definitely move to a a different Onc, Julie's Onc sounds much better. Big hug to Helen and hope she is home SOOOON!! xx

 

Sheils gla you haven't got long to wait, roll on Monday, the sooner you start the sooner you finish. Hopr you enjoyed your shopping trip.

 

Bev, have a good time in Tenby, recharge your batteries and come back renewed and strengthened for treatment.

 

Hope everyone is doing as well as possible

 

Did anyone see the eclipse? Too cloudy here on South Coast and couldn't even see the sun! |iut did get darker, colder but nothing to see.

 

xxxx

 

 

Chocolates
Member

Re: Bone mets - please join in

I just checked the boards - Helens back pain started on the 16th jan. As you can see I'm still so cross about it all. How can they ignore her for two months. There is a slim hope that she may be home today after the rads, if not then it's monday. Will be lovely to have Helen back posting. I've passed on all your love and she sends you all massive hugs and has missed you all.

Have a good weekend everyone.
Hxxx
roxy12
Member

Re: Bone mets - please join in

Hi chocolates,

Will you pass my love onto Helen please. I can't believe how awful she has been treated by the medical staff. I hope the Rad's sort it out. She must be in agony! Are the rads being done today? When she is feeling better she should put in a formal complaint.

Hope you are OK. I'm glad to hear all is well at the moment. I didn't know you had mets on your lung. Mine haven't gone any worse in three and a half years and I have no symptoms. Hope yours are the same.

Chocs, I saw the onc yesterday and my treatment starts Mon for 2 weeks. I've posted on the brain mets and it's quite a long "waffle". I've gone in more detail. You're right about my onc though. He is fab!

Hope everyone else in coping and I hope you all have a good weekend. I am off shopping later with my daughter before I get too tired from wbr. You know what they say? " when the going gets tough--------"

Love to everybody. Sheila xxx

 

 

belinda
Member

Re: Bone mets - please join in

Hi Bev, have a lovely time in Tenby, X
I can hardly believe the complete lack of basic care Helen's received. No wonder she has been in so much pain. I am just stunned by what she has been through. 😞 I only hope now she will receive the care and treatment and there is no more wait and do nothing. Shocking. Thank you Chocs, please send Helen my love, she is one strong lady. X
Have a peaceful weekend everyone. X
bertie1
Member

Re: Bone mets - please join in

Oh poor Helen hopefully the Rads will sort her pain out her Onc has been useless when she,s feeling better she needs to tell him how awful she's been treated.hope everyone else is doing ok and everyone has a good weekend
Kaye xxx
Chocolates
Member

Re: Bone mets - please join in

Hi Janette, I don't work full time - 4 days a week Mets are bones and lungs. It's not easy but keeps my mind occupied which is the best thing for me xxx
rosie53
Member

Re: Bone mets - please join in

Morning ladies
OMG poor Helen, she has had some terrible treatment with hospitals/oncs!! Chocs please give her my best wishes we are all thinking of her. Chocolates can i ask what treatment our on? You seem to be coping brilliantly working full time etc, where are your mets? (Hope you don't mind me asking)
Bev, hope you have a fab wkend, i know it won't changed what is happening but i may take your mind off things slightly.
Hugs to all Janette x x
Marie123
Member

Re: Bone mets - please join in

Good morning,, I had  spinal cord compression,I was in a lot of pain and felt awful. I had  emergency 5 day course of rads. AMAZING, in such a short time I went from hardly being able to walk , or stand for long to pain free, homestly ! Good Luck Marie x

geordiex
Member

Re: Bone mets - please join in

My goodness poor Helen ,her onc should just stay away I think hes caused harm and stress than good the rads should help a lot she'll get there and in the right place ,but we all know it should've happened at least 2 months ago big cuddles xx

Chocolates
Member

Re: Bone mets - please join in

Morning ladies, Bev, thinking of you today. Hope all goes well and then have a lovely weekend away. I know you can't forget about it but hopefully it will be a good distraction and restful for you.
Well Helen has spinal cord compression as well as all the other complications she is dealing with. The Dr said thank goodness we caught it now otherwise you may have been paralysed. I am so cross, she has been telling her onc for two months re pain in back - do you remember when she couldn't get out of bed and we were urging her to go to hospital. Since then she's seen her onc on numerous occasions and he told her to take more painkillers. I'm so disgusted for her. The tumour is wrapped round her spine like a doughnut according to mri scan she finally had yesterday. She is having emergency rads shortly to blast the uggers away. Then she should feel a lot more comfortable. Still no sign of onc. Grrrrrrrrrrrrr.

Anyway I saw my onc last night - all well so staying on h&p and got a bit of a break till I see him again. Very relieved.
Hope everyone is ok - thinking of you all. Off for treatment this morning so will check in later. Huge hugs everyone,
ps - Sheila have you had your appt with onc yet about way forward? When are you starting your rads
Hxxxx
LemonDrizzle
Member

Re: Bone mets - please join in

Helen, hoping you're on the mend and will be home soon.
Enjoy your weekend away Bev, I really hope being in a different environment will do you the world of good.
Hoping everyone else is doing ok and ready to enjoy the weekend ahead.
LD x
Bevlaar
Member

Re: Bone mets - please join in

Hi Kaye and other lovely ladies...im not too bad i suppose. Just coming to terms with things. My ct scan of chest is tomorrow at 9.20am then I'm off down to tenby till sunday. Results of scan next wed. Rads planned then in around 2 weeks i think then going back on chemo.
Have lovely weekend girls! xxx
edwina64
Member

Re: Bone mets - please join in

Hi everyone wading in with best wishes to Helen, I saw my onc yesterday but we are all waiting for scan results to see if the treatment I started (e&e)  is working. I am on 3/4 of recommended dose for the last 4 weeks side effectds are manageable. I feel ok but a bit scared now as  Bev feels well and had had a shock progression!  get scan in 2 weeks and then 2 more weeks before results,  Hope you are doing ok Bev and feeling more positive with the info you have had from the forum. Best wishes to everyone suppose 

I will always feel like this now it's part of life with secondary cancer, feeling low x

bertie1
Member

Re: Bone mets - please join in

Hi ladies hope everyone is ok.
hope they get these tests sorted out for Helen they seem to be dragging their feet,hope she gets home soon missing her on here xx
Bev hope you're feeling more positive today sending hugs stay strong you can do this xx
Well such a nice day I'm going for a walk up the lakes with my sister then anice coffee and cake after
Take care all
Kaye xxx
roxy12
Member

Re: Bone mets - please join in

Helen, hope today gets you the tests you need and then you can go home. I hope you are feeling much better. We are all missing you.😢 lots of love Sheila. Xxx

Bevlaar
Member

Re: Bone mets - please join in

Morning chocolates...God i feel so angry  about the way  Helens  being treated..,they certainly  seem to be dragging their feet! Lets hope she gets her temp sorted out soon, in the meantime I'm  sending double pair of angry eyes!!

 

I have posted an update on the Brain mets thread this morning if you can read that. Im feeling so well at the moment apart from the shock of course... it makes you wonder how and when things will take a turn for the worst?

Anyway have a lovely  weekend,  love and hugs and please pass on same to helen xxx

LemonDrizzle
Member

Re: Bone mets - please join in

Thanks for the update about Helen. Annoying that temp keeps spiking - she must be desperate to escape but hopefully she will continue to use her sense of humour.
LD x
belinda
Member

Re: Bone mets - please join in

Thank you for the update Chocs although I feel so angry Helen is still waiting for these tests! I am so fed up for her. X
Chocolates
Member

Re: Bone mets - please join in

Bev, just want you to know I'm thinking of you. When you're ready let us know how things went. Remember we are here to support you, and will always be holding your hand. xxxxx

Update re Helen, she is still in hospital awaiting tests ordered days ago. Her temp was normal all night and then spiked today. She got all excited thinking she could come home and then she crashed, knowing that was not possible. She's really fed up but I do think she is a little brighter if you know what I mean. We've even had a little joke about the husbands. Fingers crossed that the temp spikes are less now and she is home soon.

Evening ladies how are we all? Hope everyone is doing ok. I'm just updating before I go on live chat. Hopefully some of you are able to join us.

Huge hugs everyone,
Hxxxxx
JulieD
Community Champion

Re: Bone mets - please join in

Will be nice to chat to you tonight Marie if you can get registered and make it on.

Bev hope you now have your treatment plan, still holding you tight my lovely xx

Jo_BCC
Member

Re: Bone mets - please join in

Hi Marie

 

Sorry about that.  If you would like to send an email to: moderator@breastcancercare.org.uk with your forum user name and a password we will make sure you are registered for tonight's session.

 

Kind regards

Jo, Moderator

Marie123
Member

Re: Bone mets - please join in

Have tried twice to register for live chat ,but haven't heard back . Marie

Jo_BCC
Member

Re: Bone mets - please join in

Hi all

 

It's Secondary BC Live Chat tonight starting at 8.30pm and running for an hour through to 9.30pm.  The session is hosted by a nurse and a moderator is also at hand.  We look forward to welcoming users old and new to Secondary Live Chat - it's a great way of getting to know your fellow forum users a little better and sharing your knowledge and experience.

 

Here's the link to live chat  http://www.breastcancercare.org.uk/community/chat

 

Come and join us, you'll be made most welcome.

 

Best wishes

 

Jo, Moderator

LemonDrizzle
Member

Re: Bone mets - please join in

Bev, really hoping that your appt with your onc went as well as it could possibly do so and that you're feeling reassured by his treatment plan for you.
Helen, missing you on here and hoping your're feeling much better.
Hope everyone is having a good week
LD x
Sianie
Member

Re: Bone mets - please join in

Hope you get something positive from your appointment today Bev and sending love and best wishes to Helen too xxx
JulieD
Community Champion

Re: Bone mets - please join in

Just wanted to pop on quickly and wish you as good an appointment as possble Bev. Hope that you will feel a little reassured once you have a treatment plan in place. Sending you strength -  positive vibes and prayers are with you.

Sheila hope you don't have to wait to long for your appt and treatment start.

Helen hope you are starting to turn a corner and can get home soon.

Love to all you lovely ladies xx

bertie1
Member

Re: Bone mets - please join in

Morning ladies ,Bev I will be thinking of you today and sending Lots of positive thoughts and love to you xx
Sheila hope you get your treatment plan once you've had your scan sending lots of positve thoughts and love to you ,you and Bev can both do this xxx
Helen hope you are feeling better missing you on here xxx
Hope all you other ladies are all doing ok and good luck to all with appts ,scans and results this week.
Lots of love and hugs
Kaye xxx
Smartie
Member

Re: Bone mets - please join in

Bev, so sorry to hear your news, I hope your appointment goes ok today and that a treatment plan can be put in place, and for you too Sheila.
Just wanted to share the experience of one of my best friends from school who had brain mets diagnosed after liver and bone mets (the latter all found at the same time as the primary) She has had stereostatic radiotherapy and it zapped multiple mets. 18 months on and she is doing well and still singing in a live band!
Don't give up hope, there are lots of treatments out there.
Smartie x

rosie53
Member

Re: Bone mets - please join in

Morning Bev, i hope you managed to get some sleep last night love, good luck with your Onc appt i'm hoping you come away feeling more positive with a treatment plan in place.
Will be thinking of you today and will be sending lots of positive thoughts and love your way.
Morning to all you other lovely ladies, Shelia i hope you get good results from your MRI and treatment plan that does not have rotten SEs.
Helen, hope you are feeling much better, we miss you!!!!
Hugs Janette x x
Jam
Member

Re: Bone mets - please join in

Nicky That's a good idea to try the real tablet. I'll bare that in mind too. Teva was my worst one.
Janet x
Jam
Member

Re: Bone mets - please join in

Lots of hugs Bev and Sheila thinking of you both. x Janet x
LemonDrizzle
Member

Re: Bone mets - please join in

Mavis, your link is beautiful - such lovely thoughts x
funnyface
Community Champion

Re: Bone mets - please join in

Oh Bev, I just popped in here and read your dreadful news. Blast this crappy stuff! I'm glad you have an appointment tomorrow so you can get the ball rolling for answers and treatment plan. My heart and prayers are with you! (((((((((Hugs!!!!!)))))))) Funnyface

sivam
Member

Re: Bone mets - please join in

LemonDrizzle
Member

Re: Bone mets - please join in

Bev I really didn't expect this latest news, no wonder you are feeling as you do. Theres nothing I can say to help, but your onc will definitely have a plan which will work. You and Sheila are both having an awful time, but will start to feel better as you move forward.
Love to you
LD x
roxy12
Member

Re: Bone mets - please join in

I'm sure you're not Bev. I won't be either when I get my appointment but the sooner tx starts the better. Love Sheila. Xx

Bevlaar
Member

Re: Bone mets - please join in

Thanks sheila will try to keep pos. Not looking fwd to hearing what onc has to say tomorrow tho xxx
roxy12
Member

Re: Bone mets - please join in

Bev, i am really sorry to hear your news. I have brain mets now, found with ct scan but I had an MRI this morning and now waiting for treatment plan. Onc has asked for stereotactic treatment and I am hoping this will be possible as there are less SE. Also you can have it done several times if any mets come back or you get new ones. I have researched the different treatments and it is very positive but if you do research dont fall for the statistics. They will depress you. Treatment for brain mets has improved fantastically in the last few years and women are living for years after diagnosis. If you can get them stable and then make sure that the mets in other parts of the body are kept under control you will keep having MRI  of your head and they can keep zapping any that may come back. They used to follow up stereotactic treatment with WBR just in case there were any micromets not showing up on scan but now some neurologists believe that if there are micromets there they will be found if they grow and these can then be treated with stereotactic treatment.

I don't know which tx I will be having yet until the neurologist sees the scan report but I hope it won't be long to wait.

Take care Bev, try to be positive. We can support each other through this if you like. Let me know how you get on tomorrow.

Lots of love Sheila. Xxx

Porkie
Member

Re: Bone mets - please join in

Oh Bev I am so sorry to learn of your rotten news but stay strong lovely lady - your onc will have a plan for you that will work. As the others have said there are lots of treatments so one will work for you. We are all thinking of you.xx

rosie53
Member

Re: Bone mets - please join in

Oh Bev im so sorry to hear your rotten news, stay strong...easy for me to say!! There are lots of treatments out there.
Sending you a huge hug love Janette x x x x
bertie1
Member

Re: Bone mets - please join in

Sending lots of hugs to you ,stay positive and I'm sure your ONC will have a treatment plan when you see him tomorrow,we,re all here holding your hand.
Lots of love
Kaye xxxx
Bevlaar
Member

Re: Bone mets - please join in

Thanks...the worrying thing is they keep telling me they have a new plan but nothings worked since i was dx last june. . I just feel desolate x
Chocolates
Member

Re: Bone mets - please join in

(((((Bev))))), such difficult news to hear. No wonder you are distraught, tomorrow your onc will have a plan - things will then move forward. It's the shock - cry, scream, shout - all those things. Let it out girl. Tomorrow yu start a new plan which will work and soon you will be feeling much better. Holding your hand Bev xxx
Bevlaar
Member

Re: Bone mets - please join in

Thank you...yes, please send prayers and positive vibes. I dont know where to turn. Its just that so much has happened with this so quickly. First...spread into other lung just last month now this. X
JulieD
Community Champion

Re: Bone mets - please join in

My dear Bev, what a dreadful shock for you, you must be all over the place. I am glad you are seeing your Onc tomorrow, you need to know the plan of action as soon as possible. As has been said, the reatment will depend on where the mets are, how many and size, but there will be treatment. I know  people who have had an op others who have had steriotatic radiotherapy and some who have had whole brain radiotherapy so hang in there and tomorrow you'll know what your Onc thinks is the best way forward. Holding you in my thoughts and heart and happy to send up a prayer if wanted. xx