I see that a few of us with secondaries who are not on chemo are having Avastin.
I have just finished taxol and I am havinf herceptin, but I have been advised that Avastin would help me, but it is not available on the NHS.
To date all my treatment has been paid for by my insurance company through my work, however after 30 months of herceptin and lots of chemo they have refused to pay for any more herceptin/ avastin/ lapatanib treatment and they will only pay for traditional chemo therapies.
The avastin would cost me around £1200-£1500 per week and if I had it I could not then afford lapatanib which I will no doubt need at some stage…
I knew having cancer was about uncertainty and there is a post code lottery, but I didn’t expect to have to decide which is more important - another few months of life or living in the house I love with less stress.
Are any of you guys getting avastin on the NHS?
A friend of mine swears it has saved her life, but we are all different. The question is can I afford not to take it?
Any advice would be appreciated? The added stress is the last thing I need!
Hi,
my avastin story is a long one and I can hear the yawns as I type.
I was advised if I could save 60k I could have avastin in my chemo ward given by the same nurses that treat nhs patients. I have secs to liver and bones had done fec and was on capecetabine but we had got to the point where it was only being held with no further shrinkage. It was clear that it would not be long before the uggers would be out of control. This was May 2007. We went home put our house on the market and started saving like mad. By Dec it was obvious my tumours were growing and my liver was failing I asked my onc how many treatments 10k would get me as this was all we had saved. He was really apologetic and said the government would no longer allow co-payment. I asked where that left me and he said he was sorry but I would have to pay for all treatment this would run into hundreds of thousands. I was hopping mad and decided to take them to task about it. That weekend there was an article about Colette Mills going through the same situation in Newcastle. So I contacted the press and started a campaign. Because of the media pressure I put the local health service under and because I have a very honourable onc I was given avastin in Feb 2008 with taxol and I am still on this today. I almost died last March and for a while it was not looking good.
I am alive today because of avastin it is extending my life. NICE say it only gives an extra few months. I confronted them last year and I will be doing he same again this year.
I also know several other people who are having good results, the jury is still out but for me I know it has extended my life some of my tumours have gone others shrunk and the big ugger is just sitting there(think it likes it).
If your onc advises that he would treat you with it if your insurance would cover it, then this is at the point of need. You have to fight
your trust on that fact. They have to treat you at the point of need.
It is a long battle but it can be won. Good luck.
Love Debsxxx
Hi Phardy
I will not be helpful to you as I have not had Avastin and am not even sure what type of treatment it is.
But am shocked that you are left with the option you are - sell house or have avastin.
Debs post was very interesting and if you currently have the strength I would try and battle it out with your NHS.
There is an intersting article on co-payments in The Times (section 2) today which might help you, although I am not clear if Avastin is not available in your local NHS trust or whether it is not available throughtout the NHS.
Thinking about you - what a horrible thing to go through when you are unwell enough anyway.
Ena
Hi me again,
it is available on co-payment NICE have not let it through yet they would rather argue with Roche.
Avastin is also given for the eye problems in the elderly. Most Trusts are happy to take your money to help save someones eyesight they just wont give it you on the nhs.
Love Debsxxx
Without a doubt, Avastin does seem to work for some people. But the reason that NICE won’t fund it is that there just isn’t the evidence from the trials that it has a significant benefit to enough women to make it worth the investment. Head to head trials that the Marsden has been running indicate that TAxotere plus Avastin gives only a few weeks extra disease free progression compared to Taxotere alone. The average time to progression claimed by the manufacturers of Avastin is 13 months, compared to 8 months on Taxotere alone. I wouldn’t want to sell my house for an extra five months.
As it happens, I DID get Avastin as part of a trial and I was very excited about it, believing that it may give me more than the 13 months disease free survival. But I only got 8. Whether I would have got less with Taxotere alone I don’t know. What I DO know is that when my disease progressed it moved big time. My tumour markers rocketed from 60 to 900 in a matter of a few months. And I developed liver secondaries. It now seems there is research (if you read bcmets.org) that suggests that Avastin can accelerate the growth of cancer cells once it stops working.
It’s such an uncertain landscape that it is hard to know what to do because undoubtedly some people (like Debs) get such a significant response. I was initially very angry that NICE was refusing the fund Avastin and believed that everybody should get it. But on the basis of the Marsden research and the research coming out in the STates I am not so sure. I think I would rather see the money being spent on understanding which cancers will respond to which drugs so we don’t have this lottery of maybes and maybe nots.
Deirdre
These comments do tallu with my understading of the situation.
My insurance company have excluded Avastin and Herceptin so I will be having NHS treatment, however after cajoling my onc has agreed that, when I need more chemo I can have that privately as my insurer will pay.
This does mena however that he thinks we are well off and has been less keen to fight for me to have drugs through the NHS - even saying at one point that if I split my treatment he would not be prepared to fight for lapatanib on the NHS for me even though my insurer woudl not pay! We have however got past this point now. He is stating categorically that Avastin is NOT AVAILABLE on the NHS and this is clearly not the case.
I have had 2 second opinions - one onc who has spent a lot of time in the USA beleived Avastin is fantastic and could extend my life significantly and another on at the Marsden who siad it would not help at all and he would not recommend it in any form, particularly with herceptin.
It sounds like there may come a time when we will need to sell up and get it, and we will still have a fight on our hands.
Why is all of this so difficult? When I read the stories of cancer treatment being about money and postcodes I really did not think it would be this bad.
All of that said I did state that I would not spend £70k (which is what they have quoted) on a treatment that will only extend my life by around 6 months - the then spend those 6 months living in rent accommodation and not in the house I love with the people/pets I love. Intertestingly the USA onc then consdiered that Avastin would not be cost effective and has been less forecful!
I have paid so much tax/ NI for so long now I need something back they are letting me down! Does look like fighting is worth it though!
Anyway all this pales into insignificance against some of the posts on here!
As always thanks for the advice and support!
Hi
I am currently on Taxol and Avastin paid for by BUPA and am on my 8th cycle with one more to go, there is some cofusion about whether BUPA will pay for maintenance Avastin or only with Taxol, I am not sure at the moment if we are going down that route, my oncologist now seems to think that I have had most of the benefits , there is a significent improvement in my lung and liver disease but the bone mets have progressed. He is now thinking of trying another hormone treatment plus bisphosphonates.
Debs I am interested as to why you can stay on Avastin alone and then pop back on Taxol when yours progresses, that was what I was really expecting to do.
Phardy, is the difficulty with your insurance down to restrictions on the policy, I am lucky with BUPA as I don’t have any but I do feel very vulnerable as it is a benefit of my job so I really have to stay working to keep it going
Love Kathryn
Hi Kathryn,
I know I am at a stage where my cancer is constantly growing I have never been told I am stable or in remission I was told it was ‘shit or bust’ and because I had a very successful media campaign I was lucky to get avastin in the first place. I can return to taxol because it has not stopped working but our body is only able to take so many shots this time as you know I did 15 and I really knew at 12 I had done enough. I am recovering from chemo staying on avastin and pamidronate until the new ones rear their ugly heads. Then I will return to taxol.
I would like to ask the health minister why avastin is being used for macular degeneration without a fuss but they wont allow it dying men/women with cancer? Considering the obscene amount they have been claiming we could all of had a chance to see if it would work for us.
When I was fighting for it Roche capped the price, but as each trust is responsible for purchasing it’s own drugs it will be along time before it is wholly affordable. I did offer NICE that I would be the buyer for as long as I lived. Which according to them would only be 5 months 15 months ago.
Anyway that’s enough of me on my soapbox…sorry.
Love Debsxxx
Hi debs
Love the shoes! Am trying to find red ones for a family do on Saturday, more for the Gormless thread!
I am certainly coming to the end of the road with what I can tolerate with Taxol at the minute, I feel like I’m falling to bits! I think I might see if he will push BUPA for the Avastin on it’s own with the Bisphonates for my bones although I don’t have any symptons but if they are likely to control thr mets then it’s worth doing. Although it’s supposed to be Hormone positive I’ve never found that the Hormonals have held it in check. I have made another appointment for next week to see him as there is so much that you think about after digesting the scan results that doesn’t pop into your addled brain at the time. Hope you are feeling ok and have some nice things to look gorward to
Love Kathryn
Hi Kathryn, cant you ask your onc to say your body needs a break from chemo but he is fully aware that you will need to return to it when your body has had a rest. Good Luck.
Hope you find some nice read shoes, I put the purple ones on as Kate wanted everyone to wear purple at her funeral.
Love Debsxxx
Hi guys
This really is a minefield.
I am in a similar boat to both of you as I am on a break from Taxol - which to be honest I tolerated a lot better than Taxotere.
I too will go back on when there is evidence of more growth in my bone mets - which appear to be held at bay at present, but last time I had no chemo they grew 5cm in 3 months so holding me breath!
My insurance is also through my work, although I am not at work at present and they would have to contine with my insurance until either I leave of go back as they cannot make me redundant. I am pretty sure your BUPA will be the same, but it is worth checking!
My issue with insurance is that our Compamy policy is about getting you back to work so since I have been told I am terminal they know I probably won’t be back and they are ducking out! I don’t blame them. They will not pay for maintenance drugs - although in reality any drug only extends life! Anyway from what you guys say Avastin may be something I reconsider paying for at a later stage!
In addition the I am on Zometa for bone strengthening which I will also have to pay for - I met the man who discovered it’s properties and he has advised that whilst it is recommended to have it 4 weekly - 6 weekly is just as good … and cheaper, but it has proven to be the best stuff for cancer sufferers to fight the disease as well as strengthen bones!
Anyway - thanks for the advice and I am not done fighting yet, but may delay the full impact until a later date!
Thanks
Kate
Hi Kate,
you can get zometa on nhs so don’t pay for it. I am on pamidronate and Ihave that every 3 weeks. I tried zometa but had a couple of bad reactions to it.
Love Debsxxx
Kate
Just a quick post - make sure you read your policcy in some detail, some will pay for “maintenance” which I am afraid is not a useful term in our situation, and others will, it all depends on the type of policy that your company has bought. My insurance company has tried to deny me coverage for zometa 3 X even though it is covered. And of course Debs is right you can get zometa on the NHS. Private care has advantages and disadvantages and this is one of the crap disadvantages.
Cathyx
Hi
There are many people on this site that al have different opinions on Avastin and many other drugs that are not available in this country.
From a personnal point of view it really angers me that NICE and the medical consortium in Scotland (that’s where I live) can play God with peoples lives. I think that if we look at the rest of Europe and America you can see hoe extensively this drug and others are being used - so the question is are they all wrong and Britains is right? I think not,it’s down to money and that’s that. I asked the health Minister for Scotland how they worked out if a drug was cost effective or not, did they look at all the drugs that the deemed not cost effective and work out if they were all in use how much longer the patient would have to live or did they look at them all individually. The response was individually, which to me is not a logical approach but nevertheless a convient one.
Although I am on a trial at the moment, I have also attracted media attention because I could not believe, just like yourself how unbelievably difficult and corrupt the system was until you really needed it for something as important as your life.
Anyway rant over, I started fundraising last year and have already raised £68,000 and will keep going with it this year. When the time is right I will spend it on drugs that our wonderful NHS service will not provide us with.
I really hope everything goes well for you, I would fight the trust for the right to have Avastin if I were you - that does however mean that you need to be prepared to be in the public eye.
Diane
Out of interest, in your fight for Avastin were you supported by your oncologist?
Mine is not in the least supportive and seems to be of the view that it is an unknown drug so the NHS must be right and I am mad to want it!
I just get the feeling he will not support me in my fight for it which will make it even harder!
I will see when the time comes, but that will ptobably not be far off and I am not sure I can afford to miss out if he will not support me so the media route may well be the way to go!
Hi Phardy,
is that question for me?
My onc backed me. I was advised by a solicitor to ask the question If I was a private patient would you recommend avastin? If the answer is yes then ask for it on nhs. He will say the trust don’t use it because of cost or whatever but you then insist he put a proposal to the trust when that is refused you go to appeal.
Love Debsxxx
Phardy
I think you are getting blah blah blah from your oncologist, its not an unknown drug at all, its licensed by the FDA in USA and in widespread use over there and is licensed in Europe as well and used regularly in France and Spain. One of the things I genuinely hate is when one of these medical people try to patronise me - it happens from time time time.
There are genuine questions about cost effectiveness, time bought vs ocst, and the best way to use it, but it is a little strange isn’t it that most of the people (not all) on the website have had avastin through Private Insurance where cost is not the overriding factor. I was funded for 8 months and used it for 6 through PPP, other women have had better offers from BUPA. It is very very expensive and I simply could not afford to pay for it myself as my son and husband will have to live on what money I leave them when I am gone.
The NHS makes very very blunt calculations about what a year of your life is worth and for me that is total crap, it takes no account of your ability to continue to provide care for other, to work etc.
Cathyx
This is such hard stuff.
It is awful when people with cancer feel they are being denied a drug which could make a difference to the length of their life.
I am personally not convinced that avastin is a drug I would spend my own money on, nor indeed plead with my insurance company for. The trial evidence to date shows that though there are some improvements in progression free survival that they is no evidence yet of improvements in overall survival. It worries me a lot that the gold standard in trial endpoints are changing from overall survival benfits to the much less meaningful progression free survival benefits.
Anyone interested I have written an essay about this on my website.(see profile.) Its called ‘Drugs of hope, or drugs of delusion?’
I took a second opinion at the Marsden last summer which included an opinion about avastin and was not advised to try it. I had taxol on its own instead which didn’t work. Yes of course I have little fantasies about what if avastin? but I also try to be as realistic as I can about what can and can’t be done for my cancer in the present state of play…its the only way I can live with cancer.
Jane
Hi Friends,
I have been away from the forum for a few months as I found it was taking up a lot of time, and sometimes was too sad for me to deal with. I am happy to see that Debsincornwall is around.
Just a quick update. I was diagnosed with bone mets in April 2008, and started weekly Taxol, Avastin every other week, plus Zometa every 4 weeks.
I have had 3 PET scans since then, with the last one 2 weeks ago, being completely clear! WooHoo! I am on the Roche clinical trial. My oncologist has said that since it is working so well, that until it doesn’t work anymore she wants me to continue with it. It has been adjusted so that now I get the Taxol and Zometa every 4 weeks, and the Avastin still every 2 weeks.
My quality of life is so much better. I am swimming and walking again, I have energy, food tastes good again, and apart from heartburn, permanently numb toes and some tiredness, I almost feel normal !
I really thought that I was a goner and that I would have no real improvement. So everyday is definitely a blessing.
I try not to dwell on whether this Avastin is good or not, I just know that for now it is working for me. I hope that should any other mets develop in the future, that by then there will be other drugs to try. My doctors keep telling me that this is a chronic disease, and that is the way I try to think of it .
Wishing all of you all the best,
Penny
Hi Penny,
that is really good news. It is so frustrating and immoral that more people have not got access to avastin. My only wish would be that I could have had it earlier. I am still on avastin every other week and I am pleased with waht it is doing for me. Some of my tumours have shrunk others disappeared. It seems to be taking me along time to regain my energy levels. Mind you in saying that I am doing more in the garden so I must stop moaning.
I fully understand what you say about not coming on the forum, but I think it is important when you can you do. Think of all those freshly diagnosed with secondaries they need to hear about successful treatments.
Take care and please try and post more often.
Love Debsxxx