THE REASON WHY I HAVE BEEN REFUSED AVASTIN - but it aint over yet folks

Apparently I'm unusual in that although my OC has recurred three times, each time I have had chemo I have responded well. Trials of Avastin have so far been limited to 1st and 2nd-line patients. There has been no such trial for 3rd and 4th-line patients (I am the latter) and therefore there is no yardstick against which to judge whether or not Avastin would benefit me.

I asked my Onc why he had initially seemed so sure I would get the drug and he said that I am the first of his patients to be refused, but I am also the only one of his patients who has responded so well to chemo and is still going strong, and therein lies the 'problem'. He is nevertheless going to appeal the decision, despite feeling that it will probably be futile.

BUT - he has said I should not be too down-hearted as there are several other options open to me for the future. I am having my CA125 checked next Monday and if it has gone down I will just carry on with my next four carboplatin, if it has gone up I will have another scan, but for now it is business as usual. Future treatments could involve Gencitabine which he would use only as a single drug because of my wobbly neutrophils, or possibly weekly Taxol, or other drugs he didn't specify - it depends entirely on how I am once this current lot of chemo is over. He said that actually I am doing remarkably well and that I should take a lot of reassurance from that fact.

And I have. I know the OC isn't going to go away, but once again I feel really optimistic that I can continue to keep the bugger at bay, Avastin or no Avastin.

Love to you all

Patsy x

23 Replies

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  • " I feel really optimistic that I can continue to keep the bugger at bay, Avastin or no Avastin. "

    HEAR, HEAR Patsy!!!

    Very best,

    Isadora.

  • Ditto Isadora! I have just been told avastin is only available to 1st line patients. They won't let me have taxol again because of the nerve damage and I am allergic to carboplatin. Cisplatin did not work on the last tumour but it was removed successfully. What I want is a good period of remission before I have to deal with the next one. Heres to Patsy! I might even spend some Slimming World 'syns' on a glass to drink your health Patsy! You are an inspiration!

  • Tell you what Margaret - I'll join you in that glass! Can you even make it two, and here's to good, long remission times in which we can all get on with living life to the full.

    With love

    Patsy x

  • Hear hear Patsy! Just been told by OT that I do not fit criteria for a grant towardsadaptations to my bathroom. I can have a bath board etc but my tiny bathroom and the need for space to attend to the stoma and to be able to get into the shower quickly do not count so the cost goes onto the mortgage!

    Ah well c'est la vie!

    Margaret

  • Patsy, I am so sorry to hear this news about Avastin. They really haven't got it right in the UK you know, they talk a load of bull s..t. They are setting their criteria on who should or shouldn't have the drug because of costs. IT MAKES ME SO ANGRY. Trials have been running in Spain with my Oncologist in combination with Madrid and Salamanca. I had received 2 combination chemo's plus two single chemos prior to going onto Avastin, so surely that argument goes out of the window about no such trials being run.

    As my Onc keeps telling me, even if going back on Avastin again doesn't work there is still plenty out there for me. The Consultant who fitted my port a cath on Fri also confirmed I could go on for a number of years yet with all the new drugs that are coming out.

    WE have to remain positive and fight the bugger !!

    Love Anna xx

  • Hi Anna

    You've got a good point there (about the bull wotsit!) and when I next talk to my Onc I will tell him that you've had FOUR chemos prior to Avastin and see what he says to that, although it's not him making the decisions of course. Probably the Oncs themselves feel frustrated by the situation - they must do.

    I like the sound of your consultant I must say. I do think you're extra brave being long-term ill in a foreign country, but maybe you have been there so long GB now seems like the foreign land. (It is these days, now I come to think of it - but we wont go into that!). We lived in France for several years and although I did not have OC then we did have cause to use their medical service, which was brilliant. But although I spoke French quite well I did still find it hard to properly understand what doctors were telling me and so I am glad to be back here now.

    I know you've had a very rough time of late so I do hope you're feeling better now.

    Love Patsy x

  • I am going to quote you Anna!

  • High Patsy

    There are quite a few of us 4th and 5th liners out here. It's good for us all to see that with a little help from our friends we can keep going despite feeling we are fighting a losing battle at times.

    It is interesting to here all about the various different chemos being used by different oncologists, Gives one some knowledge to query treatment with one's own oncologist. I finished 18 weeks of weekly taxol in Dec last year(5th line)l and didn't find the side effects bad at all. Just the frustrating tiredness. My 125 came down from 4000 to 380! Am just begining to pick up more now. Due to see the onc for 3mth check in April.

    Interested to see how you get on.

    Love Sue x

  • Hi Patsy,

    Where are you receiving your treatment ? I asked as my Onc. He is President of The Spanish Oncology Society and from what I am told they bow in reverence to him in the States when he visits conferences there. He is a wonderful man, head of oncology at The Universality Hospital in Malaga and also a research Professor.

    He actually handed me the results of his Avastin trials in proof form before they went out to print and was very proud of the results. He had 2 ladies in remission and well over 60% including myself responded well. No perforation of the bowels either in any patient !!

    It is difficult here, I am the first to admit that. No back up whatsoever but Avastin has extended my life, I wouldn't be alive now if I lived in the UK, it was the Avastin that really did the job for me. I also know by other cancer ladies here in Spain, we are getting treatment that we wouldn't get in the UK. At the moment no treatment is excluded to any patients, whatever they need they get, that may change of course with the recession.

    Yes I guess I now class Spain as home, I couldn't live back in the UK, although I do miss the kids and my grand daughter. Our son has been here for the past week and is going home tomorrow. I shall miss him like hell, I love him to bits and he is always there for a cuddle or his Mum. I find the language so hard down in this part of Spain, so my Spanish is far from good. Hospital is organised chaos but I get my treatment and that is the main thing. My Prof's English has also got better over the past 5+ years. The Spanish nurses though I am afraid to say are arrogant and unfriendly and that is pretty well the same across the board.

    Sue, I am so pleased I found this site as even into my 6th year I am learning from all of you, we need to research and be proactive. My Onc. loves it when I present him with print off's from the computer of the latest drugs. It has also made me realise that it is possible to keep going past that dreaded '5 year' mark. Brilliant drop in your CA 125, good luck for April.

    Love Anna xx

  • Hi Everyone,

    Naturally this is a very important topic which has caused significant debate, however there have been a lot of misunderstandings and some strong claims on this and other threads, and we feel it is important to keep everyone up to date with the facts as they stand in the UK.

    Firstly its important to understand the UK drug access process so that everyone can sensibly discuss with their oncologists the issue of possibly receiving Avastin.

    There are two main hurdles which all drugs have to pass in almost every developed country: Drug licence, and national funding. They are separate processes with differing objectives.

    In the UK most drugs are licensed on a European wide basis by the EMEA -

    European Medicnes agency/ ema.europa.eu/ema/index.jsp...

    If a drug receives a licence, this means that the drug has been demonstrated to be safe and effective in specific circumstances. There are limitations on each drug licenced by the EMEA depending on what trials data has been presented by the drug manufacturer.

    The second part of the process is the consideration by individual national agencies as to how specifically it will be provided/renumerated by the national health services/insurance agencies. (Most European countries have a part national/part private set up) For the UK this is the role of N.I.C.E. (National Institute of Clinical Excellence). NICE considers the cost/benefit for the drug's use WITHIN THE LICENCE using the same data as presented at licencing and any newer data which has been published since. It is not able to consider using the drug outside of the conditions of the given licence.

    Avastin received its EMEA licence in December 2011. It has not yet been considered by NICE, however we anticipate that it will be at some point during the year. When it does so it will only consider the use of Avastin in the first line setting as this is the only circumstance that the manufacturer has received a licence for.

    There is not yet published data of significant enough power for the drug manufacturer to apply for a licence for Avastin to be given for ovarian cancer which has relapsed after first line treatment. There are studies which will be published later this year which we hope will demonstrate that Avastin provides progression free survival for women whose cancer has relapsed, but as yet there is insufficient quality of data to be able to say. (individual clinicians may have strong opinions or small case series, but there are high standards for registration trials for good reasons). If the manufacturer believes that the data for relapsed disease is robust enough, one assumes that they will apply for a licence for Avstin to be used in relapsed disease.

    SO - where do we stand at the moment?

    In the UK, cancer drugs which are not available via NICE can be funded by the Cancer Drugs Fund (CDF) The CDF is managed on a geographical basis by the Strategic Health Authorities (SHA's) Of the 4 SHAs which have so far published their final determinations on Avastin in ovarian cancer, all have approved access for Avastin in the first line setting (Although there are some variations on some specific issues such as the accompanying chemotherapy regime). If a clinician wants to prescribe Avastin and the SHA has not yet made a determination, or if they wish to use Avastin outside of the licence (For example in a woman whose cancer has returned after first line treatment) then they are able to apply to the manufacturer for exceptional use. This is something which each clinician can advise interested women on, as the specifics in each SHA differ slightly.

    Avastin shows great promise, but it is early days. What we know from the studies so far is that if a woman has it during her first line chemotherapy, and continues on a 12 month maintenance programme, her remission was on average 5 months longer than a woman who did not, however there are some more detailed considerations such as pre-exisitng health conditions, stage of the disease etc etc. Avastin is not right for everyone.

    It is impossible for any one individual to know what the course of her disease would have been if her treatment programme had been different.

    It is early days, and we are keen to ensure that every woman who, with the support of her oncologist, wishes to add Avastin to her treatment plan is able to do so. Ovacome continues to work closely with all the relevant stakeholders to ensure that Avastin is appropriately available to women in the UK.

    If you have further questions/concerns, please do contact the helpline nurses on 0207 299 6650, and they will do their best to help.

  • Hi Louise

    Thank you very much stating the situation so clearly. I admit I had had only a rough idea how the system works and now feel much better informed. I do wonder, though, given the limitations still in existence for multiple line patients, why my Onc seemed so certain I would get Avastin. I queried him on that at the time, as my understanding even then was that it was hard to get, but he still said he was confident. So I feel he rather gave me false hope and I cant help wondering if he had been keeping up with the facts - which is an awful thing to think and I'm sure I must be wrong. Even so...

    I take comfort from knowing there are other drugs I have yet to try - and for all I know they may be just as effective for me as Avastin might have been. As you say, if one is taking more than one drug there can be no way of quantifying which one is working best in one's continued survival. So best to not dwell on the 'miracle' drug you haven't got and be grateful for the ones which ARE doing their job!

    So onwards and upwards, and maybe one day Avastin will be available to come my rescue.

    Again, many thanks.

    Best wishes Patsy

  • Hi Patsy,

    As with many things NHS, its complicated! I would guess that your onc had good reason for optimism (maybe a previous patient or something akin to that)

    I'm really hopeful that you will get it, and that we get some clarity around the issue soon.

    I would recommend asking your Gynae C.N.S. or Oncologist for some more specific details and ask them if there are any workarounds. There is nothing to stop them making an application for compassionate use directly to Roche!

    Good luck & Best wishes

    Louise

  • Thanks for that Louise. I think I must make more of a pest of myself (I always feel guilty in case I'm being a nuisance!). So I WILL press for more details. Would it be OK to print off your comments to back up my arguments?

    Love Patsy x

  • Thank you too from me Louise on the explanation above.

    Early days maybe in the UK for Avastin trials, but my Oncologist has been using it for about 8 years, so he has some idea what the outcome of the drug is. Here it was used with Cyclophosmide, a very old chemo pill which was an o/c drug. The trials were not paid for by the drug company but by the Spanish Health Authority. The Prof knows that my survival and incredible tumour shrinkage and remission of lung and lymph node cancer was due to the Avastin. We also do know that not all women respond to the drug. I knew two ladies, Danish and English, at Malaga hospital who didn't respond to the drug.

    True it stopped working for me in Nov 2011, but he has had many patients who he has taken off it for the same reason and then reinstated them again months later and it started to work again - I hope this happens with me.

    Forgive me if I rave about this drug but it has been my life extender and I call it my liquid gold, because of the expense of the drug. We had to pay for the first two sessions until my Onc. could get me registered as a State patient, so I know how it affects the bank balance !!

    Patsy I wish you all the luck in the World with trying to get this drug.

    .

    Love Anna x

  • Hi Patsy,

    By all means, do print my comments out. The forum is a public one, so attributable. Anything that helps.

    We have been working closely with various agencies, including the researchers and manufacturer to ensure that we have the latest information. If there is anything of uncertainty, you or your clinician are welcome to call and we can get the specific information from the horses mouth so to speak!

    The important thing is to ensure that you get the right treatment, without barriers. We are lucky in England that we are able to access drugs even before they have been to NICE, however please remember that the jury is out over whether Avastin is beneficial for relapse, so it might be something of an uphill struggle!

    Good luck!

    Louise

  • Hello ladies,

    I just saw this and thought that for those with a deeper interest, it might be interesting. Full of statistics and trials language, but ......

    onclive.com/publications/On...

    L x

  • Dear Louise

    I have just read the above, plus the other related articles on the site, and found it all very interesting. The thing which most strikes me is that it appears Avastin may very well NOT be the miracle drug we long-term OC sufferers have been led to suppose.

    If I have understood correctly it seems that, particularly with multiple recurrence, Avastin has been shown to have very little advantage in terms of overall survival time and may cause even more problems to patients because of side effects which need separate medication. Furthermore it seems that, if Avastin is used, tumours may be inclined to return in a more aggressive form once the drug is stopped.

    Or have I subconsciously just picked up on all the negatives so that I dont feel quite so peeved at having been refused it! I'll be interested to know what anyone else who has read it thinks.

    Love Patsy x

  • Dear Patsy

    It's quite some time since your original blog. I've come across it quite by chance as I'm trying to document all the drugs listed on the site and organise them into some sort of reference spreadsheet. I started the process in a recent blog 'Which NHS What Treatment' and this has given me a good running start and helpful links to other blogs.

    I was interested to read you responded well to treatment but that the tumours recurred. My GP gives me a lot more information than my oncologist and looking at the histology report explained I have 'undifferentiated' tumours. These tend to respond well to Carbo-Platin but then also have a trend in the wider picture of returning more quickly than other types of tumour. Having said this he said I might be lucky and they may stay dormant for a good long time. Do you know if you have the same type? It would be so interesting to compare notes with people who have similar strains of this very complex disease.

    It does annoy me that decisions to approve drugs/chemotherapy are based on stats when we all know this disease is highly idiosyncratic. I think the more information we have to hand when we talk to our oncologists the better. My lovely GP also said to me last time I saw him that it's come to the sad situation that those who shout the loudest get the treatment so I've drawn the conclusion I'd better become the expert of my own disease.

    I'm not sure if you're currently having treatment. I loved your attitude of getting on with the chemotherapy in order that we can live life to the full. A lady after my own heart.

    Hope it's going well. xx Annie

  • Hi PatsyH I am really interested to know if you have managed to get the Avastin? My oncologist has tried for me and has been refused as soon I shall be starting my 3rd line of chemo, like you I am optimisic and I want to know how I can possibly get my hands on Avastin... can you help?

    Regards LindaB

  • Hi Linda

    I have just read your profile and take my hat off to you for getting through so much.

    As regards getting Avastin all I can tell you is that, having first been refused it and told it was unlikely an appeal would be successful, my Onc was happy to try again anyway. I was totally stunned when he told me it had been successful as I had convinced myself it would be another No. I asked him what he'd said to make the Cancer Fund change their mind and he said he had presented them with every bit of recorded evidence of Avastin's successes he could find, but other than that he doesn't know what changed their minds.

    I really hope your Onc will lodge an appeal for you and do tell him about my experience if it helps to persuade him it's worth a try. Do let me know if he's successful

    All the very best to you

    Patsy x

  • Hi Patsy

    Thanks for your reply and for giving me hope. I shall get back to my onc with your information. So happy for your success in your fight for the "wonder drug".

    Best regards

    LindaB xxx

  • Hi Patsy

    Saw my onc last week and he said he will make an appeal on my behalf - thought I would be starting my 3rd line but he said as I am so well at the moment he will look at me again in 8 weeks...I'm really happy with that decision...my CA125 has gone up to 394 but we were expecting it to be higher. I think a lot of my well-being at present is down to the Penny Brohn Cancer Centre.

    Hope you are well.

    A really big THANK YOU to you for all your help.

    I will let you know if the appeal is successful.

    Best wishes to you

    Linda xxx

  • Hi Patsy

    Not heard anything from you for a while and hope that you are well. I have just posted that I have finally got Avastin after 6 months of my fighting for it. I want to say a big THANK YOU for all the help and info you gave me, without it I would not have got Avastin.

    Best wishes

    Linda xxxx

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