I need help guys,
my sister who has been suffering with breast cancer for three years heard the shocking news yesterday the her cancer is terminal. she has a form of cancer called metastatic breast cancer and there is no cure.
she has been told that it is a matter of months as the cancer is aggressive and spreading quickly the worst of it is as its on her surface skin she can actually see it growing not nice!.
Anyway the only chance of her gaining more time is to have the drug called Vastin (bevacizumab) which is not licenced for use in breast cancer and it is highly unlikely that she will get pct funding!.
She has two young girls aged 11 and 14 who need more time to prepare for all of this so any help tips or advice would be great.
love a heartbroken sister Nicola x x x x x
Hi Nicola,
Have replied to you on your original thread.
Jennifer.
x
Hi again Nicola, I read your reply on the Families forum. I’ve just asked some friends on a private board for secondaries ladies if they know of any trials for Avastin here in the UK. I will let you know if I get any more info. I’m absolutely no expert, just a patient. I’ve been living with bone metastases since 2003, reading your other reply I think, in your sister’s shoes, I would want a second opinion, just so I knew I had looked down every avenue. There are many chemos and combinations of chemos for breast cancer and your sister has had 2 of a very long list.
Love Belinda…x
Thanks Jenny…x
Hope the info helps Nicola…x
Hi Nicola
Really sorry to hear about your sister. Hopefully this might be of help …I started chemo 4 weeks ago (I’ve a liver secondary) and am having Avastin with Taxol BUT am getting this privately (I am really lucky my husband’s work provides medical cover). My understanding is though that NICE is currently looking at Avastin and whether it should be provided on the NHS - Avastin WAS licensed in the UK as treatment for secondary breast cancer in May this year. I did find a news release from the BBC about it - news.bbc.co.uk/1/hi/health/6639711.stm
I think there may be trials at the Mount Vernon Hospital in Middlesex (Northwood) and at the Royal Marsden, so it might be worth contacting both of these hospitals.
Think Belinda’s suggestion about getting a 2nd opinion is really sound advice too. And somewhere like the Royal Marsden should have really up-to-date info re treatments/trials. Good luck! Kay x
Hi Nicola, I posted under family and friends section but wanted to post here to. I think I might be the person Belinda was telling you about that has had avastin. I had a combo of avastin and abraxane for lung mets. I took this combo for six months and then went on a chemo break. I stayed stable for 11 months from this combo. I agree with Belinda that your sister should have a second opinion. If the onc is suggesting this drug why isn’t he hooking her up somewhere to get it. Good luck!! Funnyface
This is a general question as my earlier message states my sister needs to have the drug avastin, which has been licenced, but not widely used in the treatment of secondary breast cancer. The only way she is going to get this drug - as she needs it asap will be to pay for it privately and i was wondering if anyone knows of anyone else who is having to pay for this sort of treatment
Nicolam, Things are sometimes different in the USA on medical issues since we don’t have a national health system. Everything here is through an insurance company or personal pay. I can tell you that when my onc wanted to avastin on me he had to ask permission for the insurance company to pay. I was so worried they wouldn’t. I happened to go to another hospital for a second opinion and was telling that onc that I was waiting approval for avastin and was concerned my insurance wouldn’t pay. He then explained to me that if my insurance refused that I would still get the drug and the drug company would resupply the hospital at no charge to me or them. I don’t know why but when I went back to my first onc he then told me the same thing. Not to worry I would get the drug one way or another. Ask if this is a possibility over there. Try contacting the drug company yourself. Funnyface
Hi there, the person I was thinking of is Cathie (hope you don’t mind me taking your name in vain…) who posts on these forums. She is on the trial in Cambridge.
Jenny
xx
Hi Nicola
I have bc plus extensive bone mets and am, as Jenny says, receiving Avastin at Addenbrookes at Cambridge. It would be worth enquiring if your sister could have this trial, she may qualify for it as they appear to be extending the trial to cover other secondary spread.
Hope you have some better news soon.
Cathie
Hi Cathie,
Hope Sally may catch up with you tomorrow. If you see her, pass on your email address, so we can get in touch.
Jenny
x
Thankyou Cathie,
Your comments are encouraging, i have passed all info onto my sister and its really appreciated
Take Care
Nicola x x x x
Just wondering if avastin is suitable for me I have liver and bone mets… but have had lots of different chemo is it only suitable for certain types of BC spread
Hi
It’s Dr Wilson at Addenbrookes who is in charge of the trial. This was my first treatment as was dx with primary and secondary at same time. The trial is for Taxotere with Avastin. Dont think previous treatment excludes you though…it may depend what you have already had.
Good luck
Cathie
Jenny
Think Sally and I are now going to miss each other for a while as my clinic/treatment days dont seem to coincide with hers at moment, but will pass it on if I see her. Hope you are enjoying the holidays.
Take care
Cathie
From what Dr Wilson told me (and also Alex, the trials nurse) the trial is currently for first-line treatment of mets only.If the trial is widened, I would certainly want to be on it, to try and see-off my liver mets. I will ask Dr Wilson when I see him next week, what the status of the trial is.
Cathie - good to hear you are well, and doubtless being run ragged by your children - as I am! Can’t believe holidays are almost halfway through already…
Jenny
xx
Jennywren & Cathie
Thanks for that … I would love to see my liver mets slow down a bit as I can feel them growing??? All in the mind probably so I am trying for some positive thoughts as they seem to be more powerful than the drugs…
I also thought it was for 1st line mets and wasn’t available if you had already had several chemos… at present am on vinorelbine (navelbine) have had CMF, Xeloda, EC and of course the old hormones of which none worked… although xeloda worked for quite a while 6 months.
It is so good to have people out there who can answer your questions thanks a lot.
Hi Wisdens, you are in a similar boat to me - had EC, tamoxifen, Taxol, femara, now on xeloda (done 6 months) and reckon vinorelbine is next. Hormones no good for me either. I am sure I can feel my liver niggling away too - we need to find something different to see the b*****s off!
Jenny
xx
Hi Jennywren
Exactly!!!
This is important.
I am beginning to realise that the availability for avastin is an important issue for many stage 4 breast cancer patients. (me included possibly.)Trial results from US and here are encouraging (extending disease free progression when combined with taxol from 6 months to 11 months…or is it 13 months…sorry can’t remember all I’ve read.)
Yes it is approved for use here in secondary bc (May 2007) but this is kind of theoretical till it gets NICE approval. Anyone know for sure where in the NICE queue it is standing? I’m going to contact people at BCC and Braekthrough to try to find out if there’s any campaigining going on. I wish the charities would focuss on some of these important treatment issues during Pink October instead of the usual trashy fluff.
This could be particularly important for triple negatives who have so relatively few treatment options.
Jane