Breast Cancer Care Forum

I'm terribly sorry, I didn't realise that this site was for England only. I must admit that, had I been a moderator for bcc, I would've found out the information for the person asking the question, instead if redirecting them. Disappointed with the service yet again ... View more

Carol Will there be any of the clinical trial sessions be given in Glasgow Jane ... View more

I've just had my fourth dose of vinorelbine. Very limited side effects and I haven't lost any hair at all. It's interesting that some people have been on this for a while, I didn't think it was a long term chemo ... View more

Thanks Nicky, I'm only on dose two of this chemo. Unfortunately Cape wasn't very good for me. She's mentioned Paxitol next if this doesn't do the trick Jane x ... View more

Hi Ethel, I've been a member for a year now but thanks anyway x ... View more

Blonde, it doesn't matter whether or hot you're working. You should get a voucher from your oncology unit worth about £85 pound roughly to put towards a wig. It's an NHS voucher xx ... View more

Nicola I'm at the clinic on Thursday, I will ask my oncologist then. I'm sure she said it would be at Christies if I wanted to do it. I believe it's done as a last resort but I'm no expert Jane ... View more

I'm in Scotland and SIRT is unavailable on the Nhs. If I wish to go ahead with it I would be referred to a consultant in England but at a cost of £25,000. I do not think that SIRT is readily available but I would like to be proven wrong. Why did they say that RFA wasn't an option if you don't mind me asking Jane x ... View more

Thank you mrs blue, I've had six doses of tax and now letrozole. I've been having a melt down as I've convinced my self it's not working. I think it's because I felt so dreadful on tax and don't have any side effects with this. The mind is all powerful x ... View more

A quick question mrs blue, I have secondaries in my liver,lungs and 3 vertebrae and this is my eighth week on letrozole. You said letrozole again in your post, can it be used more than once then .. Jane ... View more

Hi Danica, I was diagnosed with liver, lung and spine mets too. I had six doses of Taxotere which shrank my liver tumours and kept the lung tumours stable. I am now on Letrozole and will find out at my next scan if it is working. They can't tell until 12 weeks so fingers crossed Jane xx ... View more

Hi Madge I was reading you post and your comment, possible liver mets. Are they going to do further scans or have they told you it's clear Jane xx ... View more

Sorry for the delay in my response but I was away for a couple of days. No my oncologist actually said to me , don't ask me how long you have to live because I don't know, but then I don't know how long I've got either. No one has ever said less than six months except the chap at the DWP and I said no. It's one of the questions they have to ask so that it can get fast tracked. Just give them a call and take it from there. The quicker you phone then that's when they will pay the allowance from. It's not means tested and you are entitled to it Jane xx ... View more

Impressed post too quickly lol, I meant to say that my GP and Oncologist were never involved Jane ... View more

This subject totally infuriates me. I can't believe the different opinions from various health care professionals. I never used a DS 1500 nor was it mentioned it to me. I phoned up DWP, they took a few details and on receipt of the form the MacMillan benefits advisor came out to my home, filled out the form and sent it away registered post. I received my money back dated to the date I phoned DWP, within six weeks. I was also granted a one of payment of £350 from MacMillan. Why does it vary so much throughout the country, I wonder Jane ... View more

Helen, I've just told you a lot of rubbish, it's called Paloma1, Iris is another trial you might want to look at . If you google Paloma1 there's a lot of info on it Jane xx ... View more

Hi Helen, I mentioned it to my onc a couple of weeks ago as she has put me on Letrozole but she said we don't know when it will be on the streets here never mind the states and that she would use what's best for me now. It's another exciting move forwards with future treatments I think xxx ... View more

Hi Helen, the trial is called Iris and it is in stage three at the moment. The FDA have given it breakthrough status which means it has made a significant difference. It's a combination of both drugs and the company that is producing it is called Pfizzer. It looks very, very promising Jane xx ... View more

Thanks for that, I'm aware of Gabbies as an ex colleague of mine is a member and yes I'd like to join Jane ... View more