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Avastin and NICE

28 REPLIES 28
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Re: Avastin and NICE

Spike
just seen other thread so no need to reply.
Thanks.

Love Debsxxx

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Re: Avastin and NICE

Hi Spike,
congratulations, what brilliant news.
I hope you dont mind me asking how much of your liver was infested with cancer mine is like blue cheese with clusters all over. I am having a rest from taxol and just on avastin every 3 weeks, as my tumours are still growing I have 2 new small ones onc is under pressure from the trust to take me off it. My point is if others are shrinking and some are still the same how can they say it is not working?
Hope your treatment continues to work well for you please keep us all posted.
I am 57, had this bl..dy illness for 9 yrs and I cant remember nor can older relations it ever being this bad. So many younger women it makes me so sad. If the birth pill etc has anything to do with it no one is shouting about it are they?
Lets hope all the pressure being put on the health minister will put an end to the post code lottery. I have no intentions of shutting up I even get on my own pip!

Love Debsxxx

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Re: Avastin and NICE

Hi Diane

I've obviously got too much time on my hands because I've just left comments on 3 threads and this is my fourth. I just wanted to reconfirm that it is I who is receiving the treatment in Germany for the liver lesions. In fact I'm out here right now having just completed my last laser treatment on the liver. I can now officially say that my liver is in remission following intensive treatments this year including chemoembolizations which inject chemo directly into the liver and not systemic. This has all been very successful and I can now only hope that the combination of Avastin and Xeloda keep the cancer under control and stay firmly in the bones and not move to any more soft tissue. I am receiving shared treatment with an Oncology clinic in Germany as well as my NHS hospital.

It is a downright disgrace that we have to pay for proper cancer care whether it be outside the UK or at home. They should be doing more to help us. I think it is getting to a crisis point, more and more people are being diagnosed but treatments are not moving forward quickly enough. I'm only 43 and I asked my parents how many people they knew who had cancer when they were my age or even when I was first diagnosed at 36 and they knew of no one. What is happening!!

Best wishes to all.

Spike

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Re: Avastin and NICE

Hi

I have hit a brick wall with , onc as well, I will keep on at her but I am currently on a trial for triple negative patients that has quite strick criteria. You have to have secondary breast cancer and have only had a taxane type of chemo as the first treatment for you secondaries and nothing else to get on it. It compare Xeloda with Sutent, Sutent was another one of the drugs that the kidney patients have been refused.

I'm sorry I don't know the name of this trial but I think there is 200 people worldwide getting on it. I know that doesn't seem a lot but given that people with triple negative only add up to 15% of breast cancer patients and the strict criteria I know that the Western General only have 3 people on it although they were allocated 10 spaces. I would be surprised if there wasn't a hospital in England with the same trial. If you fit the bill then maybe your onc could look into this for you.

As far as treatments not available on the NHS there are many for triple negative patients another one is erbitux, 65% of triple negative patients give out too much EGFR (Epidermal Growth factor Receptor) this drug inhibits this and slows the cancer down. If you go onto the TNBC Foundation site there are a lot of Americans on it and you can get familiar with the drugs they are using and why. Most of them are on Avastin and Erbitux which they refer to as a suppressant, which in this country we don't have for our type of cancer. I asked my onc about erbitux and she simply replied she didn't know anything about it, which doesn't fill me with confidence!

I am currently fundraising so that if I need to privately fund some of my treatment in the future I will have some money to do so. We have currently raised about £22,000 since March and I will keep this going so that I know that I can go privately if required. I am also fighting like hell for the co-payment to me introduced in Scotland and will be going right to the larger newspapers this week, given the report on Panorama last night. Hopefully this will puit some pressure on them.

It was actually debbie from Cornwalls predicament that made me decide to fundraise now because there was a point she was going to have to fund Avastin herself, although the Trust backed down at the end. Dawnhc on this site also inspired me as she has been to Germany for treatment, they are about 5 years at least in front of us with their treatment plans and can inject chemo right into your liver and then laser out the tumours (although I suppose it depends where the tumours are) but it gives us hope.

Sorry for ranting on but I've been waking for 2 hours, I just can't sleep so decided to get up and have a cup of tea and a look at the site.

Hope some of the information helps you.

Diane

xx

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Re: Avastin and NICE

Hi Christine

I am sorry to hear avastin did not help you,I wish you all the best with the treatment you are now on.

Heidi x

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Re: Avastin and NICE

Hi Woodpecker
I had been told it was 1% but I agree it still is not good enough.

Love Debsxxx

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Re: Avastin and NICE

I heard the cancer chap on radio 4 re avastin - he said that nhs bill for cancer treatments takes 10% of the drugs costs - indigestion remedies take more! maybe NICE should take all indigestion remedies off prescription - not many people die of that.

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Re: Avastin and NICE

Hi Heidi

I believe everyone should have access to whatever drugs have been developed and it is only through people pressure and standing up and shouting that this will be ever happen. I am also triple neg with secondaries in my lungs. Luckily I had insurance and I was on Avastin with Taxotere for 6 cycles, unfortunately it didn't work for me. I think you should get to try everything but it doesn't work for everyone which is not always highlighted. I hope you get the chance to try it and wish you all the best for it working. I am now on my third cycle of capacitabine and don't know if it is working yet, I hope so!!!

Christine x

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Re: Avastin and NICE

Hi Anne
sorry to hear about your divorce I went through one in 1976 sad time but I wish you well.
Now re avastin dont let BUPA stop payment they should know it is given with chemo and then to manage the condition you carry on with it. It makes my blood boil they cannot dictate treatment.
Good luck with them.

LoveDebsxxx

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Re: Avastin and NICE

Hi Anne

Sorry you have this addtiional stress in the middle of a divorce as well- life really throws us some hard things to deal with....
Insurance companies really are the pits they are always looking for a way out, think you are doing the right thing to get your onc on the phone to discuss this sometimes they can move things. I am sure you have already done this - but havea really good look at the policy wording - word for word. I have had to press PPP three times as they keep trying to cancel my zometa, but its clearly allowed

take care
cathy

AnneS
Member

Re: Avastin and NICE

Just seen this thread.

Have been on taxol/avastin combo since March. After 14 tax 10 Avastin I've been getting through a BUPA policy through my husband's work (May and July)was told I by my oncologist that I'd stay on Avastin on its own for maintenance. I then got a phonecall last Monday from the onc. nurse saying BUPA had refused to authorise Avastin on its own. Although they'd been on the phone with them for 2 days BUPA wouldn't give way and my oncologist is on holiday till next week so my treatment was cancelled at 2 days notice and I'm in limbo until my onc gets back to work on Wednesday. I just hope he'll be able to get BUPA to agree to it on its own without chemo. All in the middle of a divorce as well!

You sound amazing, Debs from Cornwall. We do need to shout about it but it's hard when life is already to difficult and stressful. Do you have any idea the number of women on Avastin on its own?

Any further info would be great.

Anne

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Re: Avastin and NICE

Ladies

Not sure if I have done whisper back correct,if not Thank you for information,most grateful and now have somewhere to go with this.

Jenny Thank you also.

Heidi

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Re: Avastin and NICE

Heidi,

If you look on Cancerbackup or Cancer Research UK, you can find details of clinical trials taking place in the UK.

Jenny
x

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Re: Avastin and NICE

Can you tell me about the two trials you mentioned above,I seem to know so very little and it is not for want of trying,getting any info from my onc is so difficult.

Thank you

Heidi xx

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Re: Avastin and NICE

Avastin is not likely to be approved by NICE, and sutent for kidney cancer has been turnd down flat..if Sutent is turned down avastin doesnt have a chance, Sutent extends life by a yeaar on average for kidney cancer patients. This whole NICE business is an appalling disgrace to this country.

take care everyone,
Cathy

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Re: Avastin and NICE

Beatrice and Beth trials are going on in some hospitals, I got it because onc offered it if I co payed and then the rules changed so I made a media fuss long story wont bore everyone with it again. My onc told me last week it is getting more difficult and complicated but hes an honorable man so he is doing all he can. The problem could be solved if they allow co payment but that will cause other problems so its a chicken and egg situation. If you ask 'if I had private medical insurance can I have avastin " They say yes then you have a legal case its not an easy process but if its one you go down if I can help anyone I will.

Love Debsxxx

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Re: Avastin and NICE

Thank you both for your response,this drug sounds like something I need to keep pushing on, not sure how though as I have hit a wall with my onc with this one.Why are some women getting this and not others ?

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Re: Avastin and NICE

Hi Wooley, Avastin works by stopping cancer cells growing their own blood supply so that they cannot survive.
They use it in combination with chemo where is has been shown to extend time before cancer progresses.
But also you can continue it after chemo like the other targetted therapy, herceptin.
They are using it for colon, breast and now apparently kidney cancer. I suspect they will be testing it on others. It is a therapy targetted at the cancer cells so does not have the side side effects of chemo.
Love Pauline

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Re: Avastin and NICE

Hi wooley
just bumped up a thread on Current issues and hot topics re triple neg.
Think this will lead you to the answer, my understanding is that avastin is suitable as one of the ladies I sit next to in chemo unit is also on avastin.
Love Debsxxx

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Re: Avastin and NICE

Please could someone advise me if this drug is suitable for someone who is triple negative as I have read in America triple neg women are getting this drug. My onc has told me that there is not enough evidance at the moment that this drug would help me. I wonder if it just about costs and not sure where to go with this.

Heidi

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Re: Avastin and NICE

This is so wrong and a bl..dy disgrace, drugs that can extend life being denied to people who need them.
Why are we in the European market?
They say Gorden Brown doesnt sleep much and rings people at all hours. Well he hasnt rung me and I left my number in Westminster.

Love Debsxx

blondie
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Re: Avastin and NICE

Yes this business about consultants giving drugs to 'named' patients is not very clear, not to us patients nor to some of the medical fraternity either I suspect. It stinks that our European member states can get drugs that we cannot but also it is so wrong that the situation is so fraught that only those who are savvy enough and well enough (lets face it it is impossible to fight properly if you are feeling weak and nauseous) are able to pick their way through the system when others can't.

Can we access other country's (France, Spain) medical system as they appear to be able to do here (this based on no evidence at all and a bit 'Sun reader' sorry)?
What do you have to do - swim ashore without passport or documentation of any sort and claim medical asylum?

Blondie

ForumMember
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Re: Avastin and NICE

Forgot to add, PCT is not legally obliged to follow NICE guidelines
Mills

ForumMember
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Re: Avastin and NICE

Fight you PCT. Get your consultant to write to them. If he won't then change to a more sympathetic one. Avastin does not need to be "approved", its licensed so it can be used, as is the case of those who can get it privately. Make a media fuss. It works. Threaten legal action, the PCT,s are beginning to realise tha legal bills are more than the cost of Avastin. If you are not well enought then enlist the help of others, can I help!!!
Mills

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Re: Avastin and NICE

What I cannot understand is that these drugs ara available ANYWHERE in Europe, Here in Spain, ANYTHING my wife needs or can be of use to her she gets. I wish I could speak to the guy on the TV and tell him to move in with me and get a residents card here in Spain and he would get the best treatments available, with a one year old daughter he deserves the chance ( like everyone does ) to live as long as possible.
Thank god I left bl----dy UK !!

XX

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Re: Avastin and NICE

It will affect BC patients since the drug has not been judged to be "cost effective", therefore it will not be an option for the PCT and NHS clinics.

I can see a major row brewing since it is not just avastin but other chemos that have been turned down, and for kidney cancer patients it is a pretty disastrous decision.

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Re: Avastin and NICE

Oh I get so angry with this so called organization. How they can judge what is cost effective I fail to understand. They take forever to come to their decisions based on figures that are not always correct. Take for example, a person has to go blind in one eye before they can have a drug deemed not cost effective which then saves the other eye. Well I must be really thick because I cant work that logic out can anyone?
Avastin has not yet been passed, but because I have a big mouth and kicked up a media fuss I got it. Please dont get me wrong I am so very grateful and would not be here now without it. I am in the extra time they believe is not cost effective. The results for bc are slow as they dont have many people on it so any of us that are lucky enough need to keep shouting "Look at me I am still here"
If my pct can give it to me and others it should be available to all. Sadly some are frightened of speaking out in case they stop the treatment. It is a disgrace but I will not be bullied.
Sorry I have gone on a bit, but the whole thing stinks.

Love Debsxxx

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Re: Avastin and NICE

I heard the same thing Blondie. it makes me so mad the government has made such a mess of this country but when it comes to peoples health they are not interested, surely we are all entitled to care however much it cost and they should step in and sort the NHS out once and for all.

I don't think Avastin has total approval, or it seems for people paying privately the treatment is available. I mentioned to my registrar about this drug and he said there are no proven results for BC, I'm sure thats not right because ladies on this site are on Avastin.

Sorry to rant I just get so mad when again it comes to money against health.

Beli x

blondie
Member

Avastin and NICE

I have just heard on BBC Radio 4 'Today' that NICE has refused Avastin for kidney patients as the cost is over £30,000 per annum and gives only (on average) a couple of months of extended life - the programme spoke to a patient who has lived for over 2 years on the drug(!). Interestingly the NICE guy said that for 'cost effectiveness' the figure they put is about £20,000 per year for drugs to be approved although this can be moved for drugs that cost more but deliver significant health/life extension benefits. Not pretty but at least we know what we are up against as I have never heard it spelt out like this before.

I do hope that this ruling doesn't affect the use of Avastin for BC patients - I thought we had approval for that now? Any ideas?