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Bone mets - please join in

rosie53
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Re: Bone mets - please join in

Thanks for the update Chocolates please give Helen my love.
Hugs Janette x x
geordiex
Member

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presumabley shes at the NCCC hope shes feeling better soon xx

Chocolates
Member

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Evening ladies, how are we all. I've heard from Helen - she is still in hospital - they are struggling to find the infection as temp keeps spiking. She's on 3 hourly obs and isn't getting much sleep. No sign of onc which I was disappointed in but she is keeping her chin up. She certainly seems brighter than yesterday although very tired. She sends you all her love and says she's missing us. So now we need angry eyes on her onc to see her and give her a plan. From other ladies who have been in this situation it seems it may take a while to settle. In the mean time she is in the best (well sort of as she says its a bit chaotic) place and at least she is being monitored very closely.
Sheila - when will you find out about your treatment. Let us know what the decision is when you can. Mavis, faraway would be lovely to hear from you.
Right I've still got some work to do. Huge hugs everyone and good luck to all for treatment/scans/results. Thinking of you,
Hxxx
Elily
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My Onc doesn't like me going abroad whilst on Capecitabine. So this year, I'm going to Orkney! He would give me time off if necessary but he is adamant that I should be in reach of an NHS hospital just in case.

Stillhere
Member

Re: Bone mets - please join in

Hi Bazcas, just to say that I've flown abroad three times when on Capecitabine, once to Portugal and twice to the Caribbean. My Oncs positively encourage holidays! I've used a "normal" insurance, had to go through the mill with questions which can be a bit upsetting but I took a gamble and didn't cover breast cancer on the medical part. Not recommending this but it saved me some money, they would have covered me though.

I'm out of touch with everyone but sending lots of cyber hugs, especially to Helen xx
bertie1
Member

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Hi Bazcas I've been away whilst on Cape my ONC just gave me an extra week off so my feet weren't too bad and started taking them again two days before I came home and also got insurance cover with eurotnnel
Kaye xxx
pam01
Member

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Yes it's certainly possible. I've been on several holidays when actually taking capecitabine....and got cover from Mia and on my recent holiday from eurotunnel...Discuss with your onc...I stopped capecitabine for a couple of weeks to allow my feet to be on good form...because after a few cycles they get very painful towards the end of the cycle...I restarted capecitabine whilst still away....last weds because I knew I wouldn't have side effects before end of hols..and had arranged to do so with my onc.

bazcas
Member

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Is it possible to fly abroad whilst taking Capecitabine?
bertie1
Member

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Hi Pam sounds like you had a lovely time xx
Chocolates thanks for letting us know about Helen sending lots of love and hugs her way hope she gets better soon xx
Hope everyone else is feeling ok and good luck to all who have appts,treatments and scans this week xx
Take care all
Kaye xxx
belinda
Member

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Phew glad Nicky explained this thread Marie, it still boggles me. I thought Daniel Craig was David Cameron one weekend. 🙂
What a holiday Pam. 🙂
Gracie, hope this breathlessness is a side effect. Have somewhat similar due to low haemoglobin counts at the moment.
Sits down next to everyone at Helen's bedside. Freshly baked bread rolls and some of Bear's little critters..yum. 😕
nicky08
Community Champion

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Hi lovely ladies and especially Helen who is having a rough time of it right now.  Thanks for the update chocolates and please pass on my best wishes to Helen that she gets home soon and this has just been a temporary blip.

Hi and welcome to Marie123. A difficult time for us all when we hear that we now have secondaries, wherever they may be, so we do all understand the lows that this news can bring.  I have had mets for nearly 7 years now, firstly in my bones and then 5 years after that diagnosis they were found in my liver.  I have had lots of ups and (more) downs over this time and the knowledge and support we find on here is just the best.  The things I have found out about what to ask for regarding treatment etc has been such a life line for me - quite literally as I made sure I had a test done on my liver mets for HER2 and found out I now was HER2+ having been HER- for over 10 years.  This of course changed my treatment options but if I hadn't learnt about the fact that recpetor status can change by reading this forum I would probably not be here now as my treatment wouldn't be the right one.  Support has also been great and the secondaries part of this forum is visited by so many ladies who unfortunately have to stick around - just like our mets - and therefore get to know each other which is why we end up having little expressions such as 'angry eyes' and talking about dc (Daniel Craig) and ph (Paul Hollywood) and Helen's 'boys' as we joke about how nice it would be for them to brighten up our day Smiley Very Happy  Please ask any question, whether its about Helens boys, secondaries, treatments, scans or anything you like as someone is bound to be able to help.

Take care everyone else, sorry I've not mentioned everyone but just to say your holiday sounded fantastic pam01 - forget the washing, you won't be needing all those cruise clothes for a while unless you slink around the supermarkets in them LOL.

Nicky x

Barton
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Hello Chocolates, thanks for keeping us informed about poor Helen. All my best wishes for a swift recovery and a return to her own home - you always feel better in your own bed. Best wishes to all. Barton.x

rosie53
Member

Re: Bone mets - please join in

Hi Marie, explanation of "angry eyes" when any of us are having problems with getting treatment,scans etc sorted we support each other with our angry eyes directed to with people who are "being difficult" 🙂
hugs janette x x
funnyface
Community Champion

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Belinda, I'm not sure it is working. I think I feel slightly more short of breath. My oncologist is in India so will talk to him when he returns. Do for a scan in April. Very tired from this chemo. Having to get the neulasta injection doesn't make it any easier. My friend, John has mets and is on gemcitabine too. He had two treatments of it and his platelets dropped. He was coughing up blood and had to be air lifted to Philadelphia. He is home now but giving him a month off before they decide what next. Hoping your port works  well as mine. It has been in for 9 years now. Good  luck!

pam01
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Afternoon everone. Ive been on holiday so ahve only had the chance to skim through the thread but first of all best wishes to Helen.....hope shes soon sorted and home ;and love to Sheila......such horrible news and so scary...but hopefully plans soon in place to treat this.

So Ive had a great holiday...couple of days in Rome and then cruising...Olympia, Athens, Ephesis, Istanbul, Naples...planned my capecitabine tabs to have a break whilst away and so feet were fine...lots of walking and exploring! now left with washing and ironing to sort...but hey ho!....back to drizzle in south wales......but daffs not open yet in my garden so not missed them....feel ready to face next stage of the journey!!

Good luck to everyone facing tests/results this week.

Marie123
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Good Morning, to all my new lovely friends. I haven't cried this weekend, so hopefully I have turned a corner. Good luck to all who have treatment this week . I will be thinking of you. I'm a bot confused, what is angry eyes ?

Once again thank you

M

 

bill-ben
Member

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Morning ladies. I've not been on for a few days so good luck to everyone having treatment this week and get well wishes to Helen. Hope she has been able to take her "boys" in their aprons into hospital with her to keep her and the other patients entertained and to make sure the place is nice and clean!! We had the most beautiful day here in N. Devon yesterday fabulous sunshine and even I dispensed of my coat at one point though still had boots and two pairs of socks on. It's amazing what a bit of sun does and how it makes you feel. We were down near the beach and it was as busy as a summer day. Today? It's piddling down again just for a change.I only have to go to be a human pin cushion this week bloods one day then bone jab another. Hope everyone enjoys what is left of the weekend. 

rosie53
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Chocolates thanks for letting us know, please send my love and best wishes....nightmare!! But our Helen is a tough cookie she will be ok i'm sure
Hugs Janette x x
LemonDrizzle
Member

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Chocolates, thanks for letting us know about Helen. Please send her my love and let her know I'll be sat with you all holding her hand until she's back in the comfort of her own bed. X 💜x
JulieD
Community Champion

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Chocolates,thanks for letting us know about Helen. As the others have said please pass on love and best wishes when you are next in touch with her.

Sheila, good luck with the treatment, either option can work well but fingers crossed for steriotatic radiotherapy as it's so precise and a bit easier to cope with.We're all with you.

Nice and bright here in Sussex. Hope you all have as good a day as possible xx 

roxy12
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Hi chocolates, just seen your post about Helen. Would you give her my love when you hear from her. I'm sure she will be fine. As you say she is a strong lady.

I wonder if it is the morphine that as caused the low blood pressure as this can be a SE.

Lots of love Sheila. Xxx

roxy12
Member

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Hi Janette, add my angry eyes to the list. Waiting is a nightmare!

Love Sheila. Xxx

stresshead
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Thanks for the info Chocolates....
Helen, we are all thinking of you, stay strong..as we say..just another hurdle!! much love.xx
geordiex
Member

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Best place to be when your unwell if she's at the NCCC they are lovely and will get her sorted xxx

belinda
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Oh thank you for letting us know Chocs, I hope Helen is home soon. Lots of Love. X
Jam
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Thanks Chocolates sending hugs xx Janet
Chocolates
Member

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Morning ladies - hope you are all ok. Just to let you know I've had a text from our lovely Helen. She has been admitted to hospital with a high temp and low blood pressure. Early days as it came on suddenly. She knew you would all worry if we didn't hear from her. As and when I get updates I'll let you know. Worrying times but we know Helen is strong so we all need to hold her hand and visit her virtually over the next few days.

Huge hugs,
Hxxxx
belinda
Member

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Thank you Gracie. Should have had it fitted years ago, will make life easier. Hope you are managing chemo ok. XXX
funnyface
Community Champion

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Belinda, So glad you got a port! Funnyface

2catlady
Member

Re: Bone mets - please join in

Oh,janette,do what choc suggested and ring BCN . It's awful that you have this worry and for so long. Xxxxxxx

Shiela,the new treatment is fab for brain Mets and is so accurate. We are all holding your hand xxxxxxx.

Chocolate,the naughty boys GC & DC are just getting out of hand. It's the new aprons ,we are spoiling them. I'll see if bear can take them on a boot camp trip. Mind with all the mirrors and aprons and men make up . I don't think they'll cope.xxxxxxx

Have a great weekend ladies,Helen xxxxxxxxxx
rosie53
Member

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Oh chocolates yes please....the more angry eyes the better!!
Hugs Janette x x
geordiex
Member

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We have 2 Blue Badges here one is my disabled daughters and the other mine of course ,afraid if anyone questioned me they'd wish they had'nt got out of bed xx

Chocolates
Member

Re: Bone mets - please join in

Stress head - it doesn't necessrily mean that your mets have spread but I get what you're thinking - I would be exactly the same. Could you ring your bcn on Monday - explain how anxious you are and see if you can get the pet scan earlier? This way you have less time to worry. Hope you get on ok with the injections every day.

Natalie - would you like our group angry eyes with you on Thursday? They seem to work. I really hope your onc brings it forward otherwise that does seem a long time to wait. Tournesol - hope the trial goes well and there are minimum side effects. Is it a placebo trial as well or do you all get the trial drug? Hope you get on ok.

Well lots done today already - but unfortunately I've drawn the short straw and have the late pick up tonight and the early run tomorrow kids wise. Oh well - I should at least get some sleep now inbetween. There are plus sides.
Oh came with me shopping - no one questioned me re blue badge thank goodness. So all in all a decent trip.

Enjoy the rest of your weekend.
Hxxx
Marie123
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Oh my goodness, what lovely supportive new friends. Thank you so much. Today has seemed a bit brighter with the sun shining and all of you.

Take careM

 

stresshead
Member

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Sheila and Marie, just want to re-iterate what everyone else has already said...this is a very rocky road with lots of ups and downs....sometimes hard to see a way through but we all seem to eventually.

I have just had it confirmed that i now have a pulmonary embloism to add to my problems. m now on daily injections and am terrified that this means my mets have spread. Have a pet scan in 2 weeks and then the agonising wait.......

At least the sun is shining today!! xx

LemonDrizzle
Member

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Good afternoon everyone
Very jealous of you all who have sunshine as its very grey and nippy here.
Hello Marie and welcome - we all have ups and downs and understand how you feel, so you are perfectly normal.
Internet very iffy at the moment so not writing much as I've lost it once. Hoping you all have a good weekend.
LD x
roxy12
Member

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Thanks Tournesol, I hope all goes well with the trial. I believe they really look after you when you are on these. Good luck.

Lots of love Sheila. Xx

roxy12
Member

Re: Bone mets - please join in

Hi Marie, please don't feel guilty! We are all the same. Sometimes we can forget what is happening and then it comes back to haunt us and we feel so miserable! As Bev says it really does get easier as time goes on and there are some excellent treatments out there. Don't be afraid to be your own advocate and if you have any concerns at all see your onc.

Take care and come on here as often as you need to.

Lots of love Sheila. Xx

Tournesol
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hello, hope everyone is having as good a weekend as possible. Sheila, I was sorry to hear your recent news but your onc sounds very good and from what I've read the treatment can be very effective.

I found out last week that I have a place on a clinical trial and will be starting next week. Feeling nervous about side effects but will be glad to get back on treatment.

Smartie
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Sorry to hear your news Sheila and can't really add to what the others have said but sending good wishes. Your onc sounds really on the ball so hopefully you will get started with treatment very shortly.
Marie, sorry you have joined us here, don't be too hard on yourself, we all have days when we feel the world is against us but the support here is fantastic so keep in touch. I have had bone mets since 2006 so another long timer.
Hope everyone is enjoying the improved weather today, somehow a bit of sunshine makes everything seem brighter!
Smartie x

rosie53
Member

Re: Bone mets - please join in

Morning ladies, lovely day here in Manchester
Hi Marie, please don't be too hard on yourself, i was dx with mets to hips, ribs and spine March 2014 i am on the same treatment as you, i can go for wks getting on with life quite positively and then out of the blue "reality" slaps me in the face and i go on a downer, but i have a wonderful family and friends and this forum is a godsend the ladies on her are so understanding and supportive.
Well i am still fighting to get my bone scan brought forward, onc wants to leave it at 15th April but i am not waiting that long, will not be leaving her office Thurs until she agrees to bring it forward!!
hope you are all doing ok, have a lovely wkend
hugs Janette x x
roxy12
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Thanks again everyone. Hoping I get MRI next week and then treatment plan. It would be great if all was sorted by middle of April. I have read some inspiring stories and these help me to keep positive. My daughter found one where a lady has brain mets and these have been kept stable for 7 years with faslodex which is what I am on at the moment. If only treatment worked as well for everybody.Nicky, it is pants! I do have a lot of faith in my onc though. He got me through a bad patch last summer I'm sure he will do his best to get the best treatment for me now.

Dawn, thank you. I'm glad the kadcyla is working and giving you some relief from pain.

Helen, hope you are coping with the chemo and that your pain is easier.

Have a lovely weekend everyone. I think today is supposed to be the best weather wise so make the most of it! 

Lots of love Sheila. Xx

 

belinda
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Have a good shop Chocs, hard stares at the ready for the Great British Blue Badge shout off. 🙂 I can almost see my port under the skin, took dressing off yesterday and all looks neat. 🙂
I'm sorry you have to join us Marie, tamoxifen, rads and bone infusions were my first treatment too. I muddle through ups and downs, be kind to yourself, I have been living with mets since 2003 and still it's all a bit of a shock, surprise at times.
Take it easy Sheila, I hope you get to know days and plan very soon.
Have a peaceful weekend everyone. X
Chocolates
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Morning ladies - lovely day here again. It definitely feels like spring today. Helen, how did the chemo go yesterday - I hope the transfusion on Monday perks you up and then you begin to feel. A lot better in yourself. Hope the pain meds are still keeping everything under control and you are at least comfortable. I've told dc and gc they can't come to see you this weekend as you are too tired - they got a right ticking off when they said they were giving you bed baths everyday. No wonder you need that transfusion. xxx
Marie, our diagnosis can hit us at any time and it is a very natural thing to cry and feel guilty. We've all been there and I think in all honesty on our dark days revisit that place again. It's your body's way of saying you need a little rest and to think of yourself. If you feel it's been going on too long then go and see your gp who will be able to presribe some tablets for you to help. Whatever happens do not suffer in silence. There are lots of people and meds that can help you feel a bit better. Never be afraid to ask. What treatment are you on currently. As Helen said we are a fantastic bunch of ladies who all support each other and you can post whatever you want. Just a word of warning it is a public forum so whilst your feelings can vent away on here we steer clear of anything usually which may actually identify us to others.
Belinda - how's your port - have you used it yet? I hope the bruising has settled and it's feeling more comfortable yet. Don't be afraid to ask for some cream to numb the skin if it is painful at first to access. When I had my chest port I found it painful and used the cream all the time. Now my port is in my arm I don't need the cream - bizarre but I think my arm port is closer to the surface so less painful. Anyway I've rambled on - hope you're ok and have a good weekend.
Sheila - just to let you know yu are always in my thoughts. Was just so upset by your news - it just came out of the blue didn't it. But your onc acted so quickly - you're so strong - just another hurdle to jump Sheila - obviously you can cope with them as you keep getting the tall ones!!! You go girl - we're here for you xxx
Morning everyone else - we are so many now I'm frightened to name you all as I will miss someone out. However our lovely faraway - does anyone know if she has been on another thread recently. Just a bit worried now. I know she wasn't a regular visitor but it's been a long time now since we've heard from her. And of course our lovely Mavis - how are you? Let us know when you can how you are doing.
Right - off shopping - or to put it more realistically, off to get shouted at for parking in the diasbled bay, despite blue badge. The joys.

Have a great weekend,
Hxxxx
Bevlaar
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Morning helen and all the other ladies. ..lovely day here in south wales. You can almost smell springtime lol! Lovely daffs sprung up in borders outside the front door.
Hello Marie and welcome...yes this all probably feels very strange to you but come on here anytime whether its to laugh cry rant whatever! We all do it but I'm sure the other ladies will tell you as well that things get easier in time and we all help each other enormously on here. We really are a mad bunch at times!
Good luck with your treatment. Sending hugs ((( )))
Love bev xxx
2catlady
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Good morning,lovely ladies,hope we are all okay.
Oh,Marie,we know exactly how you feel. We all have good and bad days. So please don't be hard on yourself . There is nothing you could of done to stop it so don't feel guilty xxx
Come and use this forum as the ladies are fantastic,supportive and have years of advice. Our lovely Belinda is into her 12 year of living with it.
You can,rant ,cry .shout on here as we all understand what you are going through.
Sending you a massive hug,Helen xxxxxxx
Marie123
Member

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Hi everyone,

I am very new to this , so sorry if this is very muddled.I was diagnosed with bone mets 2013 . I am on Tamoxifen  , bone injections and have had raiotherapy , However , it feels like it has just really hit me. I cry most days, and feel guilty for being like this, Is this mormal ?

 

belinda
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Oh Helen low RBC has been my problem too, was borderline transfusion last week. Exhausted and luckily this is my week off but still shattered. Hope the new bloods quickly pep you up.
Thanks for the port info Dawn. Great to hear Kadcyla is helping so much with little side effects.
Have a good weekend everyone, Spring is springing, at last. 🙂 x
2catlady
Member

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Good evening lovely ladies,hope we are all okay.
Sheila ,your treatment has great response as really accurate so you don't have as many side effects. Hang in there lovely lady we are all here holding your hand and sending massive hugs xxxxxxxxx
Chocolate,oh yes the bed bath was lovely hee hee😍😍

Mind Mr bear wanted to plunge me in slimy green lake and I'll not mention the limpets lol I had to say no to that 🐍🐜🐌

Tracy,how are you I haven't heard from you for a while are you okay? XXXX

2nd chemo of 1st cycle to day. Found out my RBC very low so I'm in for a transfusion on Monday. No wonder I was so breathless and exhausted. I thought it was all the bed baths from the "boys" lol

Huge hugs lovely ladies,have a great weekend,Helen xxxxxxx
dawnhc
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adding my thoughts & hugs Sheila as you start out on a new treatment for this latest problem. It was interesting how many commented on their runny eyes during treatments. I used to find mine ran a bit more over the years on herceptin but more recently on Kadcyla they tend to stream at times like leaky taps! but on re-reading  your post I think you were talking of one eye so your onc was really on the ball picking up something other than just a side effect. So here's hoping his quickness - and yours on reporting it will mean a really good response to whichever treatment they decide on.

 

I seem to be getting on ok with Kadcyla - it will be my 8th treatment next week. I don't seem to get any side effects other than runny eyes & nose. I also seem to get many days now when I don't need to top up my breakthrough meds and last week at my pump refill hospital visit I asked if they would reduce the morphine in the pump to see how I would manage. (I have morphine/bupivacaine & clonidine in the mix) 10 days on and it seems o.k. I had been getting really bad breakthru pain in my thigh and that has stopped but I still get quite a few of the nerve type sensations which although not painful can be unpleasant.

 

Helen I am so glad that someone is at last taking your pain problems seriously. It is so hard living with it day in day out. I hope linking up with macmillan nurse will help to get you proper management of your pain. It took me a long time and although it isn't perfect  by any means it is better. Keep on keeping on!! they need to experiment to find what is going to work for you.

 

Belinda I hope your port is settling in 🙂 and you get to appreciate the benefits of these great little gadgets lol. If you find it is painful when accessed do ask for numbing cream to use each time. I find mine feels nothing probably because it is sited quite high up with only a thin layer of skin over it.

 

Congratulations to all of you who keep this thread going. It is such a amazing resource of information that we all share and just so supportive and though not a frequent poster I do try to keep up with all the posts.

 

Dawn

xx