Hi Girls
Yes I am so jealous about the walk on the beach, it’s lovely and sunny and I would just love to be well wrapped up and walking on the beach hope yuo enjoyed it Debs!
Cathy I am really pleased about the Avastin , they have said apparantly that it is until disease progression or 18 months. Apart from anything else it means that someone thinks that I might well still be here in 18 months time which I hadn’t been too convinced about! And I did get my hair cut and coloured and retail therapy into the bargain. Felt much more cheerful ! At least my 14 year old can’t comment about they grey roots showing ! Hope you get round to getting yours done on saturday,
Love Kathryn
Hi Kathryn
Glad your feeling more cheerful. Give your son a clip cheeky monkey kids always bring you back down to earth.
I’m joining the Taxol gang not sure when I’m starting there has been spread in the bones, unfortunately they wont consider Avastin on the NHS the Reg is going to speak to the Onc.
Love Beli x
Hi everyone, sorry to hear you are having to go on taxol Beli I am having pamidronate for my bones I think it has started to work as my knees feel stronger.
Well no walk on the beach for us today the weather was lovely it was just too much effort so I waved Ian and dogs off and made a stew!
Love Debsxxx
Hey Debs
We should all stagger down to see you in cornwall - just love the idea of the beach. Gald you feel that the pamidronate is kikicking in.
Beli - think you should make a stink about the avastin on principle, but if it doesn’t work, well I have to admit I don’t hold out that great hopes for it as results in trials etc have not been astounding. I suppose I am hoping to get something out of it - we shall see soon,
Cathyx
Beli Sorry to hear it’s going to be Taxol, do you know when it starts? I am due number 4 on monday. It is meant to be very effective even without the Avastin. The comments were courtesy of my daughter who is the fashion police round here! Not that my son is innocent in the cheeky comments scenario, he has gone to school today in fancy dress as Sylvester the cat ! The 6th form are fundraisung for Children in Need!
Love to all
Kathryn
Hi everyone,
anytime you fancy a trip just let me know 2 large double bedrooms both with sea views. Must like dogs as we have 2 westies but house is not smelly!
Well my concoctions have worked thanks for all tips.
Beli I got avastin because I was offered it on co payment and then government said NO so I made a big fuss and got it on NHS. I was lucky as my onc did believe I would benefit so backed me. I know the stats are not that brilliant but I have met several people who are on it and without they would not be alive today. I am one of them. It is not acceptable that NICE are refusing it due to cost effective bull.hit. Good luck with taxol it for me is a tough chemo but has been very effective so worth it, if it gives those extra months/years we are so desperate to have with loved ones.
No walk on the beach today it is raining.
Love to all.
Love Debsxxx
Hi Debs
My Reg phoned me tonight and said she had spoken to the Onc and I could have Avastin privately but no way on the NHS and she would talk to me about it when I see her in two weeks. I really dont think we could afford to pay privately and what would happen if we did then the money ran out would I then be able to have Avastin on the NHS. I was thinking should I get in touch with my local MP what other noise should nI be making. In really think we all need to get together and go the Downing Street and tell the PM how would he like it if one of his family had c and couldn’t then have treatment and let him she us in as people with families rather just numbers.
All help would be gratefully received.
Love Beli x
Hi Beli,
the whole situation is totally unacceptable and gets me so cross, the problem is NICE and until they decide avastin is cost effective the pct can refuse. When you speak to your onc ask 1 'Do you think my condition would benefit by having avastin" 2 'If I was a private patient would you prescribe avastin" If the answer to both questions is yes ask them to apply to the pct for funding when this is refused put an appeal in send a copy of your appeal letter to local m.p. It is all a bit of a faff but you have nothing to lose most people give up and that is what they count on. I contacted my local BBC but that was because they had changed their minds on co payment, they gave in to me because the media were interested and my condition had worsened and they did not want a fuss made is I died. Let me know if I can help further.
Love Debsxxx
Hi Beli
I know that avastin is a controversial subject and that some oncologists recommend it for their patients but I have read lots of evidence from trial results which shows that avastin does not improve overall survival for people with metastatic breast cancer, although it may improve progession free survival which is different). Evidence from trials also suggest that avastin can have fatal side effects (so can chemotherapy of course…but in the avastin plus chmeo trials in the States no one has died of chemo side effecst but a few have from avastin side effects…cardio vascular problems.)
I had a second opinion at the Marsden and was told by the consultant I saw (who does use avastin with some patients) that he would not be ‘wildly enthusiatic’ about it for me, because of disappointing trial results, and lack f evidence on its use as second or third line treatment which it would have been for me.
This is a very difficult issue beacsue I know some people feel very strongly that its worth trying avastin but looked at objectively I can’t see the benefits myself. So if I were you, and I’m not you, I’d just take the taxol and forget about avastin.
I have private medical insurance with AXA PPP who are meaner than BUPA but i never asked them about avastin beacuse I don’t rate it on the evidence I have read and the guy from the Marsden backed this up (he didn’t incidentlaly know what my views are…I just asked him to be honest with me.)
It is so hard knowing whether the treatments we decide to take are going to be the ‘right’ ones, and in some ways we never do know…but honestly I don’t think avastin is a drug to get het up about getting or not getting…its no herceptin.
very best wishes
Jane
Beli
It is always going to be the case that some drugs are more effective than ohers , I am proof of that, as Vinorelbine wasn’t a great success and i had considerable progression whilst on Xeloda. My oncologist was very happy for me to have the combination, he says the problem is NICE , previously they were able to prescribe what thy considered appropriate for their patients. The only question that we had was wheher BUPA would pay for maintenance Avastin and the answer is that they wil, he just has to do little reports on me.
I would follow Deb’s advice and maybe present anecodatal evidence from the forums if people are willing, anonymised of course, that’s one of the reasons why I find these forums invaluable, as you can share xperiences and other people,s successes of failures which to me are more meaningful than raw statistics. According to all the statistics I shouldn’t have extensive secondaries but I have . I often wonder if I made the right choice for examle trying Xeloda rather than the Taxanes but the reality is that for most of us extending our time is the priority.
Love Kathryn
Yes Jane I agree with you that Avastin is no herceptin, I think that is absolutely true, I would not use up what little money my family has to get this drug it is shockingly expensive - i have looked at the PPP bills and its about £4000 per month of treatment if not more. That is from memory. It is not a sutent - or one of the new drugs for myeloma which are shown to have really good effect despite the costs, the figures for avastin are just not totally convincing, and yet…
Beli - I actually met my MP today to talk about this issue - she was kind enough to give me 5 minutes. I have not been effected by this as I have the PPP at the moment, but she did tell me that she had become involved in these decisions with the local PCT a number of times, but she said it was very difficult to get results I wrote to my MP to express my frustration with NICE and how these decisions are made and the utter lack of transparency - also about post code rationing, I suppose I am mentioning this not because its any help to you but just to say that i think we do need to speak out…and what debs has suggested is exactly what my mp said the process is.
It seems to me- but if this drug is considered likely to provide benefit and is being prescribed on NHS and privately through the UK- and is also widely available in europe - then why isn’t it available to everyone ? It is a very difficult issue and i am sorry you have been brushed back like that from the registrar. I think that the answer you had gives the game away really -you can have it privately (it is approved for your condition) but not on NHS (we wont pay),
anyway i have rambled on a bit here - i would make a fuss really as i think the inconsistencies here are heartbreaking, Also you could ask about trials for avastin and whether you could take part…but I also think that for me when PPP refuse to pay - which they will I will not be self funding this…
love
cathy
Hi everyone,
well what can I say that I have not said before, avastin is not herceptin I realize that but in the beginninghrceptin was not given at primary diagnosis it took one women and a great deal of chuztpah to change that and change it she did. I t was her stand and the fact that I had been offered avastin on a co payment arrangement and the government then changed the rules, plus Mills was going through the same situation as me that got my blood boiling and made me do something to change things. I am still dedicated to getting access to all cancer drugs for all cancer patients on a ‘’ we need them they must supply them" basis. I too fully understand not all drugs work for all patients but when it is ‘sh t or bust time’ what have we got to lose. I feel guilty that because I shouted loudest I got avastin on the nhs because of this I made a promise to myself, Ian and my girls that as long as I was able I would help others gain access to these drugs. So Beli if I can help I will.
Back on Taxol cotinued
yesterday the eagle landed movicol and all my other treatments had an effect, oh the relief. Today we played hunt the vein, the last 3 in my only arm would not oblige so my thumb was used but painful very shaky sister got in and the treatment went ahead. With any luck when I see onc a week on Tuesday I will be able to have a line in.
Hope you all have a lovely weekend we are off to Truro tomorrow time I did some Christmas shopping.
Love Debsxxx
Sutent isn’t wondeful either. In one trial…7 out of 64 (11%) people had a partial response to sutent. The rest had no response.
I think personally that there is too much focus on some of these new drugs which have minimal minimal benefits…as shown in trials. There needs to be a whole new approach to finding solutions to cancer metastesis…the present approach is bringing tiny tiny incremental benefits…barely that… and I think tht as ong as cancer pateints focus their energies on clamouring for dubious drugs rather than on shouting louder for more imaginative research then nothing is gained.
the anecdotal ‘evidence’ from these forums does not show that avastin is prolonging life…and surely thats the evidence people want?
I agree that the whole situation is heartbreaking…and it is wrong that private insurance can buy some people a drug and others can’t get it on NHS…of course then people think they are missing out on something…and I find it heartbreaking to watch people even consider private fundraising…but the real question is why are these drugs getting hyped…for what purposes and for whose profit?
Jane
Jane is right, there seems to be a complete blockage in the pipeline when it comes to development of new therapies for metastatic breast cancer. Three years ago I went on a living with cancer day and they talked about aromatase inhibitors and oral chemo as being the next new thing. Today they are widely available and that’s great. These things have made a difference to how we are treated and the treatment options available. I believe that some of us are living longer because of drugs like xeloda.
But what are they talking about at the Living with Cancer days nowadays, and what is really going to come to fruition? I’ve heard of Cox and PARP inhibitors and ERB receptors and stem cell work, alongside drugs that resensitise hormone receptors so that drugs like tamoxifen might be kick started into working again when they have failed. But are any of these really coming along? And are any of them really going to be successful?
In my most recent discussions with my doc at the Marsden I talked about combining my next chemo drug, xeloda, with a trial drug called Fluvovine. I got very interested when I was told that this drug that has been shown to be having “great results”. But when I looked it up for myself I discovered that these “great results” amounted to, on average, only an extra piddling four months. The combination of Avastin and TAxotere for me resulted in an extra couple of months over what I might have expected on Taxotere alone before my disease progressed. These cannot in anybody’s terms be viewed as making a major breakthrough.
Deirdre
I agree with you both, as Ian has just said we are not statisticians but presumably an average of four months includes those for whom it had no effect ie zero months therefore the average for those it does work could be much longer. It is all very interesting and again thank goodness for these forums so we can all have a good debate on it.
Love Debsxxx
I think your point, Debs, is really pertinent. The stats I see usually refer to the average increase rather than the range. I would like access to figures for instance which showed what the standard deviation was for these drugs. 4 months extra for me is not long enough (I don’t think - always have the right to change my mind!!) given the negative effect these drugs have on our quality of life but if I knew the average was 4 months, but I had (for example) a 1 in 20 chance of it giving me an extra 3 years then that might change my view.
I also think there should be more research into finding out why some drugs work very well for some people and don’t work at all for others (other than the obvious HER2 and hormonal elements). Think this is beginning to happen (from what Jane said about her discussions at the Marsden and I think from what Spike has had done in Germany) but it does seem very hit and miss at the moment in this country.
Kay
I think its interesting that we don’t discuss much the distinction and difference between progression free survival (PFS)) and overall survival (OS)
Progression free survival is the time a cancer stays stable (or reduces) and the time it grows again. Overall survival is the amount of extra life a drug gives.
Certainly median stats (median meaning mid point) do not show the range of time though I think if you look closely at trial data you can probably find them. Sephen Jay Gould’s classic piece: The Median is not the Message is quite inteersting here. Sometimes there may be a relatively small range and sometimes a much larger one.
But not withstanding this my understanding is that in the avastin trials to date there has been no evidence to show any statistical overall survival advantage in avastin for metastatic breast cancer. It apears that though there is a an advantage in PFS once that period has been gone through the tumours start to grow agian,only faster so you have just as much chance of ending up dead as if you’d not had the drug in teh first place. Classically OS has been taken as the ‘gold standard’ in trials of drugs for metatstic cnacer, but the problem is that you have to wait longer to get the results, so PFS as a trial outcome is increasingly being touted by the money hungry pharmaceuticals.Roche simply could not provide NICE with data on OS and thats why NICE was unable to take a decision on avastin.
My understnading also is that PFS is not the same as ‘symptom free survival’…if it were then it might be worth more shouting over. Basically, as I read somewhere PFS is just a measure of how tumours are doing on a scan.
Now I agree that knowing your tumours are not growing is a nice feel good factor (I have obvious tumours in my neck and chest which I can feel, and know only too well the nightmare of feeling them get softer, then bigger again,almost on a daily basis) but whether that justifies spending on an expensive drug I don’t know.
Interestingly one of the powerful patient advicacy groups in the US…NBCC:National Breast Cancer Coaltion olbbied against FDA approval of avastin on the grounds that the endpoint of overall suriavl had not been proven. I regret that there seems to be no such radical patient advocacy body in the UK.
Another complicating factor at an emotional evel is that each of our perceptions about the value of extra months changes as our disease progresses. Research has shown that cancer pateints, those without cnacer, and clinicians have very different views of the value of an extra ‘few months’ of life. I know fr myself that 6 months now feels a lot more precious than it used to feel. (but thats 6 months of well time in my book, not 6 months of feeling crap on a drug which isn’t actually prolonging my life.)
Jane
What concerns me is that oncologists have had years of training and are constantly keeping their medical knowledge up to date through conferences, journals and other methods. they are no sponsored by Roche nor on commission to use their drugs. so surely they are advised and knowledgable when they recommend Avastin to patients. What worries me, is that certain people who have only read secondary research, public statistics and have had short conversations or have heard what other people have been told, are always damning the drug in a voice of authority.
Some people who read this open site may be pinning their hopes to Avastin and it is always mentioned that it doesn’t prolong life or some other negative comment. A number of threads have been started about general matters, but they always end with Avastin…well…bluntly…i’ve heard it doesn’t do what it says on the tin.
Many other drugs have failed for many other people, but they don’t get slated like this one does, and I fail to understand why. I’ve seen it work for a number of people, and it’s caused them no pain while they’ve been having it…maybe they’re lucky, who knows.
I just feel that anything that can provide hope is priceless, whether it provides progression free survival or an extra day, if it offers someone a life jacket in this rough ocean, then surely it’s better than a big wave
Hi Alsion. I presume you are referring to me as ‘certain people’ I am sorry about that. Of course I am no oncologist, just someone who tries amid the horrible personal anxt of having cnacer, to keep an open mind about treatments and evidence…and has had the benefit of a second opinion about avastin for myself from a top Marsen oncologist who prescribes avastin to other pateints. I try to keep open minded about all drugs…and know how little time many chemotherpay drugs actually give many people.
Yes hope is priceless but I think perhaps we need to think more deeply about the distinction between real hope and false hope. When I mention reserach on avastin it is to help those people who are desperate to get the drug see that maybe they are pinning hopes on something less relaible than some hype would suggest.
Hope comes in many different kinds of guises.
Sorry if you think I mention avastin too much. I would be delighted to hear of trials showing great overall survival data for avastin…I just haven’t heard of them.
Jane
Hi Alison, good post.
As you no doubt know I am one of those in the very grateful camp, my onc recommended it and I started to save to pay for it, long story so I wont bore everyone with it. My PCT gave it to me and without it I would not be here now. I have had 60% shrinkage in the many clusters that have invaded my liver. I fully understand it is not going to cure me but I also fully understand that it has already extended my life beyond the 6 weeks guidelines that NICE work to.
As long as I am breathing, I am an advocate of Avastin. For me the side effects have been very manageable, a bit of congestion in nose but very bearable; blood pressure up a bit; other than that I have been fine. Roche capped the price so they did their bit. I hope that anyone reading this is not put off trying to gain access to these drugs that are coming through. I had heard of avastin and lapatinib for a couple of years but as I am her2- lapatinib was not suitable for me. As time went on and my tumours were advancing and I was running out of chemo options, it was Taxol on its own or Taxol with Avastin. I was able to have a taxol break from May - just having Avastin and Pamidonate I am now back on Taxol now that new tumours have shown up but the other tumours have been kept at bay.
My Onc is no fool and if he did not think I was not benefiting from the Avastin he would not keep me on it. Other ladies at my clinic whose livers were not as badly affected have seen their tumours melt away and are able lead a normal life again.
What spurs me on is not stats. It is real-life evidence of seeing people that were in a bad state enjoying today. According to the stats I should have died three years ago and I can only speak for myself and the people I meet in my clinic. While I respect other peoples opinions, I am entitled to my own and that includes the power of hope. I am a positive person I consider myself extremely lucky to not have suffered depression. although who knows that might come. I just would hate anyone to be put off trying to gain access to a drug they belive could extend their life and give them that very special tlme that is so needed when we have this horrible disease. A certain man across the Atlantic has done quite well by believing in the “Audacity of Hope”…
Ayway, Back On TAXOL continued…
Today has been a very sleepy day. Plans for Christmas shopping put on hold till next weekend. Ian has done the housework, walked the dogs on the beach and slammed in the Lamb (in the oven) I am determined to stay awake for the rest of the night to enjoy the evening because if the pattern is the same as last week I will spend all day Monday sleeping as well. I don’t know how you ladies on Taxol manage to stay working - incredible. Oh I forgot to say, I have tingly fingers and itchy head.
LOVE Debsxxx