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Bone mets - please join in

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Re: Bone mets - please join in

Think i would have to pay because I'm outside england. Its a lot to think about and...at the moment being so breathless and not feeling well....would probably not be up to making the journey. Today i cant even walk from lounge to kitchen without being out of breath and have to take my inhaler with me each time i walk up the stairs to have when i get to the top! I just cant take breaths in when i get to top.
Im just so scared that things are getting worse really quickly 😯
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Hi bev I decided to transfer all my care to the marsden and so I am no longer under my local hospital . I didn't have to pay privately for the initial consultation though . My doctor did say she needed to make sure our practise was one that could refer there and It was . I wish you well and hope you are able to get a second opinion there it's an outstanding hospital .x
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Glad the BCN was able to give you some answers Bev, crazy situation all this post code, country differences though.
I hope all goes well for you tomorrow, will be thinking of you, having my chemo too.
Rest up and take it easy, hope the side effects are not too unkind whilst bashing the 'uggers away.
Take Care, XX
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Yes just spoke to BCN. She said i could be referred to marsden and they wouldnt stand in my way but i would have to pay for private consultation initially (not a problem) but then if i decided to take their treatment on board it would mean ending my care under my current hospital to travel there for all treatment and all my notes would be transferred there instead. Xxxx
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GPs in Wales normally refer cancer patients to local services but can go out of the area – and to England – for specialist care.
The GP making the referral will pay for the services their patient receives, allowing them to purchase cancer treatment from an English provider by agreement.
If a GP will not or cannot make a referral for treatment in England a patient can take matters into their own hands and ‘find’ an address in England.
The address - rented, owned or through staying with family, is then used to register with a GP in England.
Once accepted and registered with a GP, the patient will have access to the services that doctor commissions and pays for in the same way any English patient might.
Such a patient should be registered with only one GP and would have to de-register from their Welsh doctor before switching.
Hi Bev and Su, and anyone else interested, I found this info, your GP's would be able to verify this, from last year. Not that you might want to do anymore than file this info for possible future reference.






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Re: Bone mets - please join in

Bev

not sure we can get a second opinion in England any more, you have to apply for funding as I understand it.

Su xxx

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Good luck with your results today,fingers crossed it's good news .
Kaye xxx
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Lucy...by transferring your care does it mean that you can no longer be seen by your usual hospital?
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Hi Bev,

 

Nothing much to add as all the other ladies have said it. Im so sorry Bev that this particular treatment has stopped working, but don't give up-there will be other treatments that could work-speak to your McMillan nurse or doctor for guidance-we are all here with you lovely lady.

 

Hugs and lots of love,

 

Mowser xxxxxx

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Aaah lucy thank you so much. Im definitely going to consider it as an option once ive started the carboplatin tomorrow x
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Good luck Natalie with your results. I am thinking of you.

Love Sheila. Xx

 

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Hello I don't post very often but read most days . After reading your latest news bev I felt I had to post . I am a patient at the royal marsden . I went for a second opinion and as they suggested a different approach to what my local hospital were offering , I decided to transfer my care there . I travel 2 &1/2 hours each month for my treatment . It's worth it ! As one of the other ladies have said you need to go to your GP and ask to be refered for a second opinion . The whole process only took about 10 days then I was sent an appointment to see one of the consultants there . I'm being treated at the one in Chelsea . Patients do come from all over the country so I don't think you would have a problem being in Wales . I hope this helps . Good luck vicki x
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Thinking of you Bev it's always worth getting second opinion,there are still plenty of options left for you xxx
Sending yo lots of hugs
Kaye xxx
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Thinking of you Bev & sending big ((((((hugs)))))). Really sorry the docetaxol didn't work out but I'm sure there are more drugs to try & a second opinion is a good idea.

Helen xx

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Good morning all, good luck today natalie, hope it's a good appointment, with some good results. X
Hope you can get some answers to any questions you have, some good contacts and you are most definitely in the 30% group with Carboplatin Bev. X
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Good morning everyone
Bev, I'm glad you managed to get some sleep even though your head must be spinning with too many thoughts. You say carboplatin is only 30% successful but I bet docetaxel has a much higher success rate but that didn't work for you so ignore figures as you'll be one that it does wonders for.
Natalie, thinking of you today with fingers crossed.
Hope everyone has a good day.
LD x
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and as we learnt last night at the Welsh Assembly...north wales have agreements for treatment set up at the christie /liverpool etc because there is no tertiary level of service in north Wales....the treatment given is that agreed by the Welsh assembly...not necessarily the sameas English pts when the drug fund was available to them.

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Thanks sheila. The christie is Manchester isnt it? A lot nearer anglesey than where i am. Ive heard excellent things about christie and the marsden but i can get radiotherapy at my hospital. Not sure if its the same radiotherapy. ..but I'm at the Cancer Centre of Excellence in Wales. Onc mentioned radiotherapy yesterday but then dismissed it to perhaps use later as. I'm not in any pain yet. He said the stereotactic radio wouldnt work on my mets either.
I really feel like i have limited options and so scared. Seems each time i mention a different treatment he just shakes his head xxx
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Thanks natalie...i did sleep from about 11 till 5.30. Still reeling this morning and so scared that this wont work either and my cancer will find a way round this too. Just looked on net and seen that carboplatin is around 30% successful...not very high is it?

Hoping all goes well for you today...and you get a positive result! Thinking of you xxxxx
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Bev, when I was an in patient in the christie a few months ago there was a lady having radiotherapy Mon to Fri. She lived in Anglesey. She would go home Fri after treatment and come back Sunday evening ready for treatment Mon. Her bed was saved over the weekend. The treatment lasted 6 weeks. I don't know how it was sorted out but she was happy with the arrangement.

It's worth a try Bev. I is a great hospital.

 

Love Sheila. Xx

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Morning ladies, hope we are all ok.
Bev, i hope you managed to get some sleep last night and things seem a little clearer today, i imagine your head feels battered with it all, stay strong they will get a treatment that suits you!!
Well its my onc appt today and results of CT and TM results, iv got the usual butterfly tummy this morning!! Appt not til 3.45 so a long wait ahead of me 😞
Good luck to anyone else getting results etc today.
Hugs J x x x
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Thanks pam...thats been a great help. Will go with this chemo for now see if it works. Yes i had asked him about hormones because i was weakly positive. ..he had said he wasnt sure that they would benefit but when i asked was it worth a try he said "well i suppose we could...theres nothing to lose" . Except he wont know (if it does work) which of them is actually working. And also if it doesn't I'll have used 2 options in one go.
He said they dont normally give them together.
I just thought the more they can throw at it the better but must admit I've been having my doubts all night and wondering if it was the right thing to suggest and that i should just have the carboplatin?
Im just so confused....feel i just want to throw everything at it.
Not even sure what the letrozole will do.... xxxxxx
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Bev...so sorry to hear your news........just a few thoughts which may or may not be helpful.....By all means ask about a second opinion...either to reassure you you are on the right course or to make alternative suggestions. Im sure Prof  would see you...but would be discussing in the same MDT meeting with access to the same trials unit so not necessarily a true seond opinion......but still maybe helpful to talk things through with.......you have been very unlucky that the first 2 treatments offerred have not worked...and that doesnt mean the next thing on offer wont. Nor does it mean the treatment has been wrong or that there is better on offer elsewhere....everywhere treatments are kind of trials and no one can be sure they are going to work until they have been tried..they are just going for best guess....Maybe other trials will be on offer elsewhere and that is why it may be worth going further afield for a second opinion....worth  getting advice with regards to this from your own consultant or prof.....they wont feel offended or be trying to stop you having access...they know the score and will want you to feel you are having the best available....In the meantime its worth going with the new chemo........its bound to take a bit of time to organise a second opinion.

I didnt quite understand how you ended up on chemo and hormone treatment...did he go with your suggestion?....Is that what you wanted?

Good luck with all of this...Pamx

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Sounds a good idea Bev. Use all your options, everyone who can help. When I realised a couple of treatments were out of the mix for me after being diagnosed with heart failure after Doxorubicin I started to look at all other avenues, trials etc, just trying to max out all available. Take care, both of you. XX
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Thanks for all the info. You havent bombarded me at all. Im glad of anything to steer me in the right direction. Its been really helpful. Hubby is sitting here with me now reading up on the marsden. Think I'll enquire about getting a second opinion from Prof based at my hospital too. Still trying to get my head around it and make sense of it all xxxxx
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Bev I hope Carbo and Letrozole work wonders for you, sorry I didn't mean to bombard you with posts just thinking a second opinion, even during your new treatment might be worth it? In your shoes this would be my plan. Hopefully the new regime gives you some good results and a long time but some ideas or thoughts for what's after the new chemo might be helpful? Must admit I look into what's next all the time, like to have a bit of an idea. I'm sure BCC will know about referrals to England, good luck lovely, it's high time you had some good luck. X
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Oh sorry only saw the first half of your reply..have just read the rest....thankyou xxx
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Oh thanks Belinda. Should i wait and see if the carboplatin and letrozole works over next 3 cycles first? Would they accept a referral from wales at christies or marsden? Would i have to speak to my onc first?
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Hi Bev, just a couple of things here, from the Christie and Royal Marsden websites. Not sure if living in Wales is an issue or not though.
How do I get referred as a patient to The Christie?
If a patient wants a second opinion from The Christie, or wishes to be referred to us for treatment, they must do this through their GP or hospital consultant. We can only accept referrals through a doctor.

Referrals for a private consultation should be made in the same way.
*******************************************************************************
Patient choice
You can be referred to The Royal Marsden. As a patient, government policy allows you to make decisions about your healthcare.

If your GP thinks that you need to be referred to see a cancer specialist, you can choose any hospital in the country. This means that regardless of where you live, you have the right to see one of The Royal Marsden's world-class cancer experts.

At The Royal Marsden, you can be seen by a leader in their field with access to state-of-the-art facilities and technologies at one of the world's premier comprehensive cancer centres.

Find out more

If you have any questions please contact the Patient Advice and Liaison Service (PALS) or visit the NHS Choices website to find out more.
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Oh Bev, I'm so sorry to hear  your news! I can understand your devastation at the news. You have suffered so many nasty side effects from this chemo, and now this one has let you down! All my thoughts are with you, and all my hopes that the next chemo works for you. Love and hugs, Barton.x

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Oh no Bev - I'm so sorry - really thought docetaxol would kick the little uggers. Must be so difficult for you - but Bev you're going to take the pills and then hopefully this will be the regime that finally gets you stable. Some people get that first time - for others it takes a few before things begin to change. The treatment is starting quickly - so that's good and I have everything now crossed that it will work. Huge hugs Bev xxxx
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So sorry Bev. Apart from what has already been said I can't think of anything to say. Try to be strong. Kind thoughts and hugs xxx
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Bev, don't think about giving up. If there's one thing I've learned from this site it's that treatments often don't work and we have to persevere until the one that does is found. I've had a quick look through the trials and see what you mean about being weakly er pos throwing a spanner in the works, but maybe because it is so weak you could be included and treated as if you are negative.
LD x
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Bev,there will be a treatment that works. Don't give up ,my first two didn't work.
Lots of ladies have treatments that don't work for them and it's a bit of trial and error to find the right one. I reckon this one will do the business xxxxx huge hugs lovely lady ,Helen xxxxxxxxx
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Bev here's the link to the Pamela Northcott fund I mentioned. Sounds well worth a call. X

http://www.pamelanorthcottfund.org.uk/
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Bev im so sorry for you and can only echo what others have said NOT TO GIVE UP. There will be a treatment that works for you and I hope and pray that it is the next treatment.x

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Thanks youre very kind. Im exhausted...mind working overtime and dont know where to turn next xxx
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A news story of how a patient was going to move to England for treatment but managed to get funding, mentions the Pamela Northcott fund?

http://www.itv.com/news/wales/2014-11-28/cancer-patient-wins-appeal-for-cancer-drug-on-welsh-nhs/
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I think they are still recruiting Bev, how's your GP? Do you have a Mac Nurse? You need someone to take this on for you. Be on your side. Will have a look on the net for you and hopefully someone cleverer than me here can point you in the right places. X
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I have a close aunt (mothers sister) and cousins in birmingham. Near Solihull x
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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