I'm confused - I have mets to the brain from OC and have been very ill. I have had two treatments of Avastin (paid for privately) whilst my consultant at Christies in Manchester has tried to get this funded as it is off the NHS.
Its been refused twice even though it is clearly making me so much better now I rang NICE and they told me to go local as I live in Chester and they have their own commissioning team here and it would be so much easier to go nearby now that my little boy is due to start primary school in September. I am 42 and a mother and feel to young to take other drugs that clearly are not as good as this at getting into though the blood/brain barrier and treating the tumours that are causing problems even though they are small.
Has anyone got any advise or a similar experience of this??
Thank you x
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RayRay
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Hi I am so very sorry that you are going through this terrible time, I am sorry that I haven't any advise or experience for this, you could give the helpline a ring and speak to Ruth Payne tel 0845 371 0554
Love x G x
Hi Ray Ray
I am really sorry that you have found yourself in such a dreadful situation.All I can add to the other posts is that it is absolutely scandalous and it is time things changed and a more individual approach was taken .
I hope it works out for you and the stress is relieved a bit.
I'm so sorry that you find yourself in this situation; being denied a drug that is obviously helping you and all this additional stress. Excellent advice from Annie as usual. Do let us know how you get on.
Like everyone else I am very sorry to hear of your situation and it makes me sad that when at your most vulnerable, you appear to be being denied a drug that you know works in treating your mets. It could be worth asking your specialist to apply directly to Roche on compassionate grounds for them to find further treatment of Avatsin.
It's right Roche did grant drugs on compassionate grounds some while ago. This was the only way patients in Wales were getting hold of the drug. I rather think it no longer takes place. Well, that's what my oncologist told me when we met up last week. xxx
I feel like taking a delegation of you ladies to meet whoever is making the decisions in Manchester about Avastin. It is truly scandalous. I for one am up for action if Ray thinks it will help.
Thank you all for your feedback - Annie thank you for your advise - I have forwarded an email to Frances Reid (even though she is off until next week) but at least I live in hope that Chester will have more luck with their application. I am even successful on half a dose which means half the payment and twice as long if it continues to work. My previous brain tumour which was successfully removed is a reason I don't fulfil the criteria too. xxx
I hope you get some help from all the charities. I think it was my post that has been deleted because I mentioned Frances Reid. I don't understand why it was removed as it didn't contravene the terms of engagement of the HU site. Hopefully Ovacome won't mind if I also mention Cancer Research UK and the National Cancer Research Network UK which are both looking into problems of hospitals not referring patients to clinical trials in their immediate area. I'm aware one of the trials currently recruiting is one that includes Avastin in the treatment plan. I mentioned Target because they have a research officer and he will be able to tell you which one it is and where it operates.
If you are on a third relapse I could put you in touch with a woman I met who had Avastin twice and is challenging NICE about the guidelines that prevent women having it a third time. She would be a good ally and may well know where you could seek advice. She's not a member of this site but I'd be happy to put you in touch with one another.
The most important thing to do is to help you asap and it doesn't matter who or what charity that is - you just need all the support you can get.
Louise from Ovacome here. I was really sorry to hear about your situation. I am also very sorry that you came here to have a question answered and the thread has been hijacked somewhat. (Which happens far too often these days ) Hopefully I can redress this a bit!
Ovacome have been working on drug access problems for over a decade, and with Avastin in particular for five plus years now so there are lots of ways we can try to help, and people we know to ask questions etc.
I at the British Gynaecological Cancer Society meeting today and spoke to some of the Roche team here to ask if there are particular access issues in Manchester. It would seem not. I do wonder if you are having 3rd line or subsequent treatment, as it is unlicensed after second line thus does not fall under the CDF. Some of the Roche team know of Clinicians who have managed to get treatment outside of licence approved so if you can call us on Monday we can discuss this further. 0207 299 6650.
I hope you manage to have some fun with your family over the weekend.
Not sure what you refer to in terms of hijacking and I sincerely hope that there was nothing in my response to cause an issue. I also thought that in all responses we were supportive.
I am not sure if it would be appropriate but at some stage would it be possible to see how and who has been successful in getting Avatsin outside of licence. This is not for me but for others past second line chemo who want to know more about access to this drug and any guidance that they could be given in how to approach with specialists.
No not your post at all. (I have deleted the offending one).
A good idea to look at successful individual funding requests too. We will have to do this via the office as here are some confidentiality issues. I will talk to a few oncologists here and see if they would be prepared to share their IFR submissions either with us or their patients.
Thank you for getting back to me and I understand now, and if what you suggest does come of, it could have the potential to help OC patients have an informed voice in consultations,
Sorry no advice for you. But I wonder if you could help me I am 43 and currently undergoing second line chemo. I live in Wales just over the border about seven miles from Chester but being treated in Wrexham. I did consider moving to england before second line. I asked about avistan before starting second line treatment and was told not available. I asked if was suitable for me as I would consider funding it myself and was told that it can help remission but sometimes cancer then grows back faster. Not sure I pressed hard enough and really got proper answer. I would like to ask how you went about funding it privately and if its not too cheeky what the cost is.
If you would prefer to send a private message I can send email or could do on site.
Thanks
Sharon
I'm sorry this is happening to you. But firstly, I know of a lady who had brain mets that were treated and she is still well two years later. My second thought is - has you team considered referring you for possible treatment by the cyberknife at the RM? I realise London is a lot further away, but it might be worth asking the question. (Treatment is relatively quick and relatively painless.) I have heard various success stories. Thirdly, there is a gamma knife at Leeds, which is much closer. That might be another option. Again I have heard success stories. Ovacome can doubtlessly give you better advice.
All I can give you are ideas. I hope Chester looks kindly upon your application. As drdu says, there is always hope.
My history has been first line of hysterectomy and carboplatin in 2011; then last year I had Taxol; radio surgery on two small brain tumours and a successful operation on another brain tumour. On Feb 1st (this year) all was clear but it all came rearing back in April. I was offered nothing initially, then Caelyx but told it may or may not go into my brain. So, I was thinking about everything, reading etc but I had a seizure and was really ill. Even then steroids weren't staying down, I was booked into the local hospice and expected the worst suddenly.
However, I had Avastin and within days I started to feel human again. It costs £1600 each treatment as I only need half a dose due to my weight - so I am hoping that I can take it for twice as long and I get the help I need with the funding.
I have had 2 doses now and feel so much better. I will never feel my old self - I know that - but I am here for my son and that is the most important thing to me.
I am now getting help from Ovacome; Target Ovarian Cancer; Yes to Life; Macmillan's etc and I remain in hope the scan will come back better and I will get some assistance with the funding.
If the scan comes back with the tumours smaller then I can have cyberknife again - this is not available twice on the nhs either but if the tumours are shrinking with the avastin then I can have it again but have to pay for it privately.
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) Hopefully I can redress this a bit! 
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