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Bone mets - please join in

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Re: Bone mets - please join in

Thanks for the trials links but cant really fully undrstand them. Some say they finish in a few months time...does that mean you cant join them? And who do you ask to find out if u can join? Also being weakly pos. Most of these are for triple neg or er pos. Im neither?
xxxx
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Hi Bev, do you have family in England, mentioned, I edited one of my posts below to add there are ways round this. Some Welsh patients are renting homes, living with relatives, over the border. I know it sounds drastic but then you can get urgent referrals to the Christie, Marsden, the CDF. It used to be, a while ago, you could get an urgent referral in a fortnight. Give BCC a ring. We are all here for you. X
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Im in cardiff. ..no CDF here. Im only weakly positive 3/8 so not triple neg but onc said as its so weakly pos hormones will prob not work. But i asked couldnt we give it a try as i was clutching at straws and he said they could give it a go as there was nothing to lose. But said they dont normally give them together as it would be hard to determine which one was working if they did work. Also if they dont it means ive used 2 options in one go?
Can anyone steer me in right direction? i mentioned trials but he said none seemed to be available except maybe one using platinum therapy? But not for 4 months yet and theres a waiting list.
Surely there has to ve more? And how do i get another nhs referral at another hosp? I feel lost and dont know how to go about things xxx
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Oh Bev, I'm so sorry and can only add to what the other ladies have said on here. I hope the change in treatment works really well for you and you get some good results. I can imagine how devasted you must be, you have been through such a lot already and hope that the support that we're all sending your way helps in even a small way.
Take care
Nicky x

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Sorry if everyone has already heard of this trial but it's for advanced bc, trip neg and I thought it would be worth posting here. I know you are being offered Letrozol Bev but it might be worth asking?
http://www.cancerresearchuk.org/about-cancer/trials/a-trial-of-bal101553-for-advanced-cancer?SearchQ...
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Oh Bev so sorry to hear your bad news, my heart goes out to you, wish i could give you a big hug.
Do not give up you are made of strong stuff and i am sure they will come up with a treatment that better suits, plus like some of the others have said have thought about a second opinion??? Don't know where you live??the Christie is a fantastic hospital and there is the Marsden.
Cyber hugs J x x x
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Bev I haven't looked through them yet but here are the CRUK trials, edited to say I've just been through them and a few are for trip neg or if hormone treatments have stopped working. I think most of us er+ eventually become less responsive to hormone treatments so the link may be worth a look. Anyone, as far as I know, can get a referral to Marsden or Christie in England but you are in Wales? There are ways round this, rental, relatives addresses, BCC helpline? X

http://www.cancerresearchuk.org/about-cancer/trials/search-results/?AdvancedSearchFormType=clinical_...
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Oh,bev,huge hugs ,sooooo sorry to hear your news xxxxxxxxx what an awful shock for you. Has he said why letrozole ,if your TN. Can you do what Belinda suggested and go to another hospital.
God I wish I could hug you. We are all sending you all our love and hugs,Helen xxxxxxxx
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Bev, I'm so sorry you have had this news but taxotere did not work for me last year and I ended up with worsening liver mets. I have been on a kinder chemo vinorelbine for the past few months and this has kept me stable since last august. It is just finding the right one for you. I hope carboplatin and letrozole are the ones for you. DON'T GIVE UP!

 

Thinking of you Bev. Lots of love Sheila. Xxx

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Oh Bev I'm so sorry to read your news and dont know what to say other than the next combination could be the one that works for you. I was thinking about trials which might be happening at another hospital if nothing at yours.
Sending love and hugs
LD x
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Hi Bev what a horrible shock can only imagine how you are feeling ,let's hope the next one does the trick for you .Have you asked about any trials going on at Velindre that might be suitable for you that might be another option.
Huge hugs to you
Kaye xx
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So sorry to read this Bev can only imagine how you must be feeling.but must hope that the next treatment is your good one! Much love and support xxxxx

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Sorry to read your news Bev, don't forget our helpliners are on hand today until 5 pm if you feel up to calling to talk things through

0808 800 6000

Take care
Lucy BCC

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Oh no Bev I am so sorry. What a horrible shock for you. Are you at a large teaching hospital? If not have you thought about an urgent referral to Christies or the Marsden? Just for some new thoughts, ideas? What about some of the newer drugs or trials? The Cancer Drug Fund, something out of the box. I am gutted for you. Lots of LOVE. X
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MORE BLOODY BAD NEWS!! Cant stop crying. Docetaxol not working so stopped. 2 main tumors still same size on scan but spread to other lung...multiple small ones there now and more enlarged lymphnodes. Starting carboplatin and letrozole on fri. Im desolate. What am i going to do??
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good morning

 

hope bevs and anyones appointments go okay this week. glad to hear you are doing okay after a horrible few days helen.

 

i had a pain over the weekend, which set the worrying part of my mind going. it was nowhere near as bad as helens but i had some pain going down towards my leg. im wondering if this is connected to the mets or just my bad back. its just starting to ease off so ive prob been overthinking it.

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Good morning lovely ladies,how are we all doing?
Bev,massive hug for today,you go get them girl xxxxx
Smartie,hope everything goes well today for you ,we will have to name your port lol xxxxxx
Oh,Belinda bear and mr Steve backshall are not helping around house at all. They are too busy finding creepy crawlies in garden. I'm going to have to re think this multi hubby lark they have to be watched like children all the time.hope mr Hollywood doesn't start misbehaving .

Huge hugs to everyone ,Helen xxxxxxx
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Thanks everyone for your support and good wishes. Up and at 'em !! Will report in later xxxxxx
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Thinking of you Bev, hope you get good news at your appt today.
Hugs J x x x
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Bev, hope everything goes well at your appt today and you get the positive results you deserve.
LD x
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Thanks Bertie and Lemon Drizzle for your kind thoughts, feeling a bit more normal today.
Hope all went well Smartie and all goes well tomorrow Bev.
Hope Bear is not being a pain Helen, no camp fires and tents in the garden for all the family.
X
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Good luck Bev with your scan tomorrow,hope it shows improvement with this new chemo.
Kaye xxxx
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Helen, I'm really glad you are feeling better. I hope your next appointment isn't long though and you can tell them how bad you have been. As for statistics, they are very out of date! I have seen many improvements since I started coming on this forum so keep positive about birthdays not just your 50th!

Lots of love Sheila. Xx

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Bevlaar..have no liver mets knowledge but just wanted to send love and hugs for tomorrow. I'm sure you will be fine but I know only too wel what the worrying is like. (((xx)))
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Glad to hear you're feeling better!! with you all the way on 'cap feet'.x
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Yep,  every single one Bev, it always happens,

 

Love and hugs

 

Mowser xx

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Thanks Mowser thats reassuring. I just have this illogical side of my brain that always seems to take over when scan results are due!! You know how it is....every single new pain..... xxx
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Hi Bev,

 

I really think what your BCN says is right- and that it is because you have been coughing and have strained your diaghragm muscles-I have multiple liver mets all over, and somedirectly under my ribs, and the pain and soreness I get is more a dull ache, but it only really hurts when I breathe in, hold my fingers steady on the spot, and let the liver really press hard against it-then it hurts. But not at all by any gentle touching.  And i agree with you, if there had been anything kicking off such that you could actually feel it, you would have seen something in your last bloods.

 

Try not to worry lovely lady, you take care, you have been through so much the past couple of months-you need a break!! Scan results will be with you soon enough, and based on what you describe, I find it hard to believe it is anything ominous.

 

Loads of love, will be thinking of you tomorrow,

 

Mowser xxxx

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Lovely to see you posting again Helen, we all missed you. Take care xx

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Yey Helen good to have you back, :-)
love and hugs J x x x
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Hello all. Helen - so glad you are feeling better, and Mowser - hope you perk up and feel better before you go on holiday. Hugs to all. Barton.x

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Hey Helen welcome back!! So pleased youre feeling better. Yes I'm much better with the asthma meds....a new woman.
I have my scan results tomorrow and the only thing concerning me is for the last 2 weeks I've had awful tenderness across top of my abdomen..mainly on the right..directly under diaphragm. Feels sore to touch lightly but not when i press firmly??
The BCN said she wasn't surprised and put it down to me over using diaphragm to breathe and not my abdomen while I've been struggling to breathe.
Cant help thinking though that somethings happening in liver?
But surely my bloods 3 weeks ago before the last chemo would have shown elevated results? But they were normal.

Can anyone with liver mets help put my mind at rest before tomorrow? Xxxxx
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We had snow in Sussex thismorning Mowser! it has cleared now though.

 

Glad to hear you are a bit more mobile and in less pain Helen but I still think it's worth mentioning to your team.

 

Hope some of you will make Live Chat tonight.

 

Have as good a day as possible girls xx

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Helen, so glad to hear you are back on form, moving about, and feeling a tad better albeit drugged up to the eyeballs-arent we all!!

 

You have such a wonderful, whimsical sense of humour that always makes me smile. It makes me feel as though I am in one of those wonderful black and white comedies with Cary Grant amnd Lauren Bacall!

 

Just getting my insurance confirmed with MIA today-not been feeling great these past couple of days. Worried it will spoil my holiday Smiley Sad 

 

Hope you ladies all have a great day, sun is shining, and where is this flipping snow they keep promising us? I love snow!!

 

Hugs 'n stuff, Mowser xxx

 

 

 

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I have the perfect cure for all you ladies with hot feet syndrome. I will visit you all and cool you down with my hands and feet which are always freezing these days. Even in the summer it was not unknown for me to be sat outside in the sunshine with a hotwater bottle! The other night I went to bed with 2 bottles and a husband who is a living radiator and always hot and we in the SW have not had such cold weather as some areas.

My bit on statistics. My onc showed me some graphs on her computer then added that I shouldn't really take alot of notice of them as records are only kept for 10 years and are a couple of years old. With on going improvements in treatment past statistics are not really relevant now. If you look at  survival rates as little as 5 years ago we are all doing better and long may it last.

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Smartie, I hope everything goes well today, but ask to be sedated if you start to panic- it's wonderful!
LD x
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Smartie,good luck for today xxxx we will all be holding your hand,but not looking as I'm a bit squeamish .yes,I did think the same as you smartie,there are a lot of "young " women on here.i still class my self as young. Lol. It's all the hubbies hee hee xxxx
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Thank you ladies,oh bear Grylls,yummy ,could I fit another hubby in??? Oh I'm sure I could hee hee!
Yes,Ray not trying to be ,unkind is a bit chubby to be "I can survive in wild" adventurer! I'm sure he has mars bars in his supplies as surely all that clambering up mountains etc must make you fit.
Oh LD ,I do hope old speedo man is not mrPH as he's been in kitchen for months and I've not seen him???

Lol at feet of flag stones Belinda. When I was in euro disney the tiles on bathroom floor were freezing so I kept getting up to stand on them in night. I wonder why it's nighttime that they get so hot?!
Oh,Kaye,the time is flying now,your baby will be home soon. Can he bring an iceberg back with him for us cap girls to put our feet on lol
Huge hugs,from a smelling sweetly,Helen xxxxxx
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Helen, glad you are back with us and posting cheery posts as usual.
Ian leaving in a few minutes for my Hickman Line insertion also had a call from the hospital yesterday to say that as my HB is low they are going to give me 2 units of blood today too so that I am a bit better prepared for the start of the chemo in a week or so. Guess it will be an early test for the line so fingers crossed it all goes ok!
Seeing everyone posting their ages on here it makes you realise how many of us are still so young, I had original diagnosis at 37 and just celebrated 50 last year so Gigli make sure you plan for wonderful celebrations!
Love to all
Smartie x

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Hi Helen I'm so glad you,re feeling a bit better you had us all worried,hope you've mentioned this to your oncology team,make sure you take it easy and get all your oh' running around for you .My feet and hands are not too bad at the moment just very dry but I did have three weeks off between having a cold and holiday so perhaps that's why see what happens when I get my next lot of peachy pills.xx
Belinda hope you're doing ok on your new chemo x
Bev hope your asthma Meds are helping your breathing x
Spud I don't look at any stats as I don't think they're always correct we all respond differently to Meds so I don't think stats are a true reflection.I try not too think too much about the future and do get upset when I realise I might never get to see my grandchildren but I have been very fortunate that after being diagnosed with primary at the age of 37 when my youngest was just 10 I have seen them grow up into wonderful young men one aged 29,27 and 25 which is more than some people have had .I still get dark days but try and enjoy life and take each day as it comes and as Helen says all the ladies on here give you plenty of advice and support.
Well that's my going on done but on the plus three weeks and my oldest will be home from Antartica yipee.
Hope everyone else is doing ok,going to pick my great niece up from playgroup in abit and she always brightens my day.
Take care all
Kaye xxx
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So pleased to hear from you Helen although the old wrinkly man in speedos has put me off my breakfast - I hope it's not one of your husbands who has let himself go while you've not been very well. If so, you'll have to crack your whip and sort him out!
Belinda, hope you're more comfortable this morning and no other SEs appear.
Spudlab, you must be exhausted working such long hours - hats off to you for being able to do it. Hopefully you'll be able to cut back when your hubby comes home and enjoy family time.
Hoping everyone has a good day and if it's icy where you are be careful.
LD x
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How lovely to hear from you Helen. But not the flies, sending Bear Grylls round as I type. Ray Mears is a bit too boring and sensible. Hope you now start feeling more comfortable. I remember the Cap Hot Feet feeling, one New Years Eve we were in the garden listening, watching fireworks, everyone muffled up apart from me, bare foot on the icy slabs, lovely. X
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So glad to have you back Helen with your cheery post.
Hope that your back continues to improve. I find sometimes that a nice hot shower can do me a world of good....
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Good morning lovely ladies. Huge hugs to everyone for there love and kind words you are a wonderful bunch of ladies xxxxxx chocolate your a lovely lady and thank you for the texts ,you can play matron in Belinda's carry on film lol xxxx

Well at least I'm mobile now,got quite a fright at weekend. Still in a bit of pain and back weak but okay. The morphine is helping ,still spaced out or perhaps that's just me being a dizzy blonde lol
Well at least I can get in shower today.well I'm going to try!
I'm sure I've got flies buzzing around me as haven't been washed for a few days lol!!! Swat! just got one with iPad.

Belinda,hope your okay on new chemo and joint pains aren't causing you too much discomfort xxxx
I can't check on all posts if I turn page my message disappears grrrr
Bev,hope breathing is better on you asthma meds xxxx

Spud,don't look at stats,I've just had 49th birthday and reading stats will just depress you. I live everyday as normally as possible. I have great friends and family that help me do that. I try not to think of the future as when I do it's too upsetting. I know the reality of having liver ,lung and bone mets and very aggressive cancer but try to just get on with life while I can and enjoy it. But like everyone else I have very "dark" days The lovely ladies on here help me cope as they are always there with advice and support Xxxxxxxx

LD and Ruth ,I know what you mean,I do feel very upset and angry at times and feel I've been robbed of 30+ years of my future life with my family. I know I'll not see any grandchildren and that breaks my heart.xxxx

Kaye,how's your SEs doing on cap. I'm busy heating the street with the heat from mine,no one need heating on they just sit around my feet. Roasting marshmallows Mind the old wrinkly man in speedos sun bathing next to them is putting me off my breakfast ,also the council have asked me to sit on front of gritters and put feet on ice to melt a path on the roads lol xxxx
Desi,hope your doing okay xxxxxx

Well I have shooed neighbours away from my feet as it's time to venture in shower and no ,wrinkly old man is not joining me. Well pesky flies you better buzz off as I'll be smelly sweet soon.
Oh my what a long post,sorry ladies,huge sweet smelling hugs ,Helen xxxxxxxxxxx
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Morning ladies it's very white and frosty on the south today! Helen hope your more comfortable today. Xxxx
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Morning ladies,
Wow Spudlad you put some hours in work!! I have just cut mine down to 15hrs a wk, please dn't take much notice of "stats" i refuse to read anything like that as we just do not know what lies ahead with this disease and prefer to do just take one day at a time and just try to enjoy my life best i can, i am 47 and was dx at 39 with primary and 46 with bone mets. I have a friend who was dx at 29 with primary that then spread to lung and was told by her onc she had only 12 months to live.....that was was over 10yrs ago.
Hi Helen, thinking of you, hope your feeling a bit better today.
Hi to all hope you have a lovely day, good luck to those getting results etc today.
Hugs J x x x
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Gosh spudlab. ...cant believe you're working 60 hours a week, that's amazing! I do 2 days a week 16 hrs only because i enjoy going there so much.
But sorry you feel so alone at times. I would imagine though due to working those hours you dont have much time for socialising (or the energy!
Youre still very young too and i know what you mean about wanting more time. I was 48 when dx with my primary. I'll be 58 in april and was dx with my lung mets last may. I dont know where yours are....bone?
Its horrible reading the stats. ...sort of brings it home to you and i dont think they're as good for lung.

But lets all keep strong and well (I wish I had your energy lovely lady!!) and hope for countless more treatments in the future. xxxxxxx


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I know what you mean! I am glad I am well other than a sore shoulder and sleepless night. My oncologist told me she had patients who had done well for 10 years in my position and sounded very positive. I told her that was great but at 46 with a 16 year old I wanted more than that.
I am working up to 60 hours a week and enjoying it but remain scared about leaving my son.
My husband and child are as supportive as they can be but I haven't told them the stats say I have a 23% 5 year survival - it doesn't matter if I am in the 23%!!
My husband works away and I feel very alone
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Thanks chocolate for the update on Helen we were all worried about her .
Hope everyone has had as good a day as possible .Late posting been busy looking after my great niece today and I always manage to forget my illness when I have her,she's such a tonic.
Take care all
Kaye xx
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Chocolates...thanks for the post about Helen. Hope she continues to improve....always enjoy her humorous posts....they often lift my mood...