Bone mets - please join in

[roxy12]

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

Love Sheila. Xxx

[stresshead]

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

[geordiex]

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

[belinda]

Oh thank you for letting us know Chocs, I hope Helen is home soon. Lots of Love. X

[Jam]

Thanks Chocolates sending hugs xx Janet

[Chocolates]

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]

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

[funnyface]

Belinda, So glad you got a port! Funnyface

[2catlady]

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]

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

[geordiex]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[lizH]

Thinking of you Sheila

Liz xx

[Barton]

Dear Sheila, so sorry to hear your recent news. I can't really add anything to what the others have said - I just want to add my cyber support to you along with everyone elses, and to let you know I am thinking of you. Wishing you all the best. Hugs, Barton.x

[nicky08]

Hi Sheila
The news you got yesterday is pants! However I'm so pleased your oncologist was on the ball and got the scan done so quickly which should mean that treatment also starts quickly. Keep strong, you know we are all here to help support you and keep you in the positive frame of mind you have already adopted 🙂
Hi to everyone else, hoping that treatment is being kind to you but really nasty to the little uggers.
Enjoy the Spring sunshine if you can. Having been cooped up in the chemo ward all morning having Herceptin and Perjeta I have been freed early as I've nagged them about the infusion and observation times and am now back at home, hooray.
Nicky x

[roxy12]

Thank you to all of you for your good wishes and HUGS. They cheered me up a lot!

I am feeling more positive today and if I can have the stereotactic treatment hopefully it will not be long before things are sorted. Apparently it takes 2weeks to plan treatment but I think the it is only a couple of days to do the radiotherapy.

As usual I have been doing research into this and there is some positive information out there.

Hope everyone else is OK and that you all have a lovely weekend.

Spring summer, I hope your treatment goes well.

Lots of love Sheila. Xxx

[springsummer]

Dear shelia

wishing you all the best as well. My thoughts are with you during this scary time but my lovely I am sure your Onc will sort out this out for you- just another hurdle to have to get across. 

What does everyone think about the new lung cancer trial - mixing stem cells with gene theraphy- sounds promising doesn't it for ways forward with mets. Treatments are coming on now in so many different ways - i am on a biological (?) treatment now. Hasn't started working yet as will take a few weeks. A bit scary too as I am getting worse before it gets better and my breathing is not good!

I'll let you know how it all goes though.   Have bought a vanload of  cut daffodils and they are now throughout my flat and look lovely. Really cheers me up the smell and colour

SS xx

[Sianie]

Wishing you all the best Sheila, with the love and support from your daughter you'll get through this, keep us up to date, sending cyber hugs and kisses
Love sian
Xxx

[Jam]

Sending best wishes Sheila keep sharing your thoughts with us all we'll try to help and support you through this. Stresshead haven't had chest pains but one make of Letrozole gives me lots of pain in knees and hands so my pharmacy don't give me that brand anymore. It's a bit trial and error with it. Write down the manufacturer as you get your prescription and put side effects next to each one. Then tell your pharmacist if you want to avoid that one. Hope you get sorted and it is just the Letrozole. Janet

[Chocolates]

Oh Sheila - that's just such a shock - you must have had a real scare. Was just catching up on the board from yesterday and giggling at the comments and then yours. Sheila - you've got through a very difficult time last year and you're going to get through this one too. Your onc sounds really on the ball and is really quick to react. Whatever option is chosen it will be successful and will be feeling much better soon. Sheila - I'm sending you huge hugs and want you to know that we are all here holding your hand. We will be there through every hour of your next step of treatment.
Let us know when you're able what you have decided to have and when you start.

Just so upset by this - you've been through so much already. However, a few weeks of treatment and then you should be back up and running again.

Hi to everyone else. Helen it's lovely to have you back with us. I knew sending the boys up to bed bath you would do the trick. Hope you're staying on top of the pain and can tolerate the next chemo with fewer side effects.
Hello everyone else - hope you are all doing ok. Good luck to those receiving results/having treatments tomorow or at the weekend.
Stay well everyone,
Hxxxx

[LemonDrizzle]

Sorry to hear your news Sheila, but your onc sounds wonderful and things should get started quickly x

[bertie1]

Sorry to hear your news Sheila but sounds like your Onc is on top of things sending hugs xx
Bev we do miss them when go it's hard letting go hope you're feelimg ok xx
Take care all
Kaye xxx

[Tinkerbelle]

Sorry to hear this Sheila - your team sound on the ball though.   I hope it goes smoothly for you and is successful.   In the meantime will be thinking of you and sending positive thoughts.

Tink x

[belinda]

I'm so sorry to hear your news Sheila. Your team sound on the ball and I hope all goes well for you. X

[Bevlaar]

Oh Sheila not the best news but not the end of the world either. They know what treatnent is best for you and sounds like its al in hand. Lets hope for the best...im sure you'll be fine lovely lady ☺☺
Kaye...no wonder you're so proud of your son....rightly so! Trouble is we miss them so much when theyre not around.
Have a good weekend ladies....love to all of you xxxx

[Luo]

Hi All. I haven't posted for ages but feel compelled to do so as my latest blood test shows my ALT up to 91 and my CA 153 shot up to 90. This BT was taken a few days before going on Cape so I can't blame it on that, not knowing what other peoples ALT and CA are I am a little freaked. Lots of bone mets and lymph gland in neck as well as raised lumps in breast scar.

[2catlady]

Oh,Shelia,massive hugs xxxxxxxx glad your onc on the ball. The radiotherapy will get the little Bs.
We are all here for you and your cyber friends are all sending you massive hugs,Helen xxxxxxxxxxx

[rosie53]

Shelia, sorry to hear your rotten news, at least your Onc is on it early and hopefully they can get you started on the treatment soon, stay strong Shelia (easy for me to say) your made of strong stuff girl 🙂

Sending you a HUGE hug Janette xxxxxxxxxxxxxxx

[roxy12]

Not good news I'm afraid. Have got a lesion at the base of my brain and a couple  at the side. Onc is booking me for an urgent MRI and then if possible I will be having stereotactic radiotherapy. If neuro specialist thinks this will not be possible, I will have to have wbr but hopefully stereotactic will be the treatment. The lesions are very small and there is no swelling so he thinks treatment should be successful. He said most patients don't find out until the lesions have progressed more but my eye symptoms warned him early. He is certainly on the ball so can't fault him.

So feeling a bit down at the moment but hopefully scan will be soon and then on with treatment. He doesn't seem too worried. I asked though what if treatment doesn't work and he said that is when it becomes life threatening. At the moment it seems stable.

Will let you know what happens next.

Lots of love Sheila. Xx

[belinda]

My D gives everyone hard stares (like Paddington used to) if we are out and we get the Blue Badge Police.
Sheila, runny eyes on chemo, yes mine have just streamed at times.
Kaye the hospital patient is lucky, some would have got very cross with her. If that's her interpretation fine but she needs to keep it to herself and think of why others might well feel differently.
Helen and all, do check out Patrick on GB Sewing Bee, Helen definitely one for your harem. 🙂

[rosie53]

Kaye that silly woman should keep her opinions to herself, so people just amaze me with the crazy mad cap ideas they have in there TINY minds!!
Forgot to tell you ladies about my blue badge experience last wk, i only ever use the disable parking bays if there are not many ordinary parking spaces, i went to Tesco and parked in one, when i come out there was an elderly man in the one straight facing me, as i got in my car he was looking at me shaking his head with that "your not disabled" look on his face, i shouted to him "what are you shaking your head at" to which he continued to do so i got out of my car with my badge and walked over to him and asked him again, i was sooo mad!! I think my face must have said it all cos he then said it was something on the radio he was shaking his head to....didnt believe him but left it at that as he was an old man. Some people!!!!
hugs Janette x x

[2catlady]

LD,my daffs are out,God I love that flower.all my snowdrops and crocuses too. Yippee spring is here xxxxx

Kaye,you have every right to be proud of your son and he will be very proud of his mum too xxxx
Stress head , it may be a side effect of letrozole .but ask to be checked out,for peace of mind .xxxx

[bertie1]

Hi Helen and Geordie we did feel like kicking her somewhere painful silly woman!
Chris is off to AUS for a month then he's back for a bit ,then he's off to Europe on his motorbike for a month,then he comes back and probably start work at the end of June either back to Antartica for 6 months or Norway where the company would fly him back and fore working two weeks on or two weeks off he hasn't decided yet ,nice life but so proud of him.
Take care
Kaye xx