Is Avistan being approved by the NHS?

[BusyLizzie]

In one of the other questions, my twin Sarah is trialling a drug to attack the blood supply to her tumour. I understand that Avistan works in the same way. On the macmillan site one of my friends has been told that the NHS may well approve it next year. Has anybody else heard this?

[Meryl]

Hi BusyLizzie

I can't answer the question but thanks for asking it. On an American site, similar to this, it's obvious that a lot of OC patients over there are having Avastin most of them as a maintenance to keep the disease stable after chemo. It's difficult to tell from the comments how effective it is long term but most of the comments seem to be positive.

I hope you get an answer to your question. Meryl XXX

[BusyLizzie in reply to Meryl]

My friend is being treated privately in the UK, and they have been trying to get hold of Avastin for her as she has an inoperable tumour on the liver. They have 4 doses for her so far, and believe they can get the rest in the New Year once it has been approved. I hope you have seen Ruth's reply below.

Love Lizzie

X

[RuthPOvacome]

Hi I am one of the support line nurses. Avastin is due to be licensed soon for ovarian cancer but will not yet have been approved by NICE for use in ovarian cancer. If you would like to discuss this further please give our support line a call on 0207299 6650/08453710554 Mon - Fri 10-5. Please leave a message if necessary and we will get back to you

best Wishes

Ruth

[BusyLizzie in reply to RuthPOvacome]

Apologoes for the mis-spelling but thanks for the info. I WILL call next week as I am trying to get my ducks in a row regarding treatments.

Lizzie

X

[Hidden]

Thanks for that Ruth.

At last something for us "Ovarian" ladies, we know there are no promises but at least there is something to hope for on the horizon.

The Breast Cancers ladies fought hard to get their "Drug" and look at what its done for them.

So come on NICE, think of us please and roll on Good News for the New Year for all of us. YEH.

[Meryl]

Hi all - I've been doing some research into trials of Avastin and OC since Busylizzi asked her question - it seems that the jury's out on the benefits in the USA. The following is a representative extract from

businessweek.com/news/2011-...

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In one trial, Avastin combined with chemotherapy delayed by four months the growth of cancer in women whose ovarian tumors had returned. A subgroup of the second study showed 79 women taking Avastin died, compared with 109 among those treated only with chemotherapy. The data was released today at the meeting of the American Society of Clinical Oncology in Chicago.

The results have renewed debate over whether Avastin, the world’s best-selling cancer drug, offers enough benefits to merit U.S. marketing approval for use in the disease given its side effects and costs. Use in ovarian cancer could help stem a decline in sales. U.S. regulators on Dec. 16 said they intended to revoke the drug’s conditional approval for use in breast cancer, citing lack of survival benefit. Roche appealed and a hearing will be held June 28-29.

______________________________________________________________________

There's loads of info out there on trials and from what I can see it's all v. similar. The cost factor seems to be a considerable talking point - in the US it's given as $59,000 a year. Given the state of the NHS budget right now I'm not holding my breath that NICE will give it the go ahead. I'm sure the debate will continue.

[spanishanna]

I wish some of you ladies could see my trial results of Avastin every two weeks taken with a daily tablet, Cyclophosmide. My Oncologist has been running these trials in three places here in Spain, one Malaga University hospital which I attend. You do have to have the right criteria to go on this drug, but for me it has been a life saver.

I was given months to live in Jan 2009 by Prof Kaye at The RM in London. My Oncologist sent me to see him so that I could converse with someone in my mother tongue. The two hospitals both work closely together, my Oncologist sending research students to The RM. I came back to Spain with bad news, but my Prof had Avastin up his sleeve. It has put my lung and lymph node secondary cancers into remission and shrunk 3 other tumours considerably. Unfortunately despite tumour shrinkage still happening, the CA 125 was starting to rise so I was put on Carboplatin with Avastin. Until we see the results on 30th of this month,if it has risen again, I am not certain what the next stage of treatment will be, but there is certainly an option of going back on Avastin again after another possible course of conventional chemo.

In my opinion the amount of money NICE are spending on alternative drugs it would better be spent on some of the newer drugs that are proven, in many cases to work.

I wish all you ovarian ladies the best of luck in trying to get this wonderful drug, I know The RM are doing trials at the moment with it. This treatment is very long overdue in the UK and only pressure from the 'powers that be' and ovarian patients hopefully may change this.

Mine costs something in the region of €2,000 for a 30min shot, all on the Spanish health service.

Anna x

[BusyLizzie in reply to spanishanna]

Hi Anna,

I was hoping you would share your thoughts as I know they were positive. It is interesting that 2 different trials can give a very different impression of how useful the drug is.

Love Lizzie

X

[spanishanna]

Forgot to mention Lizzie that Avastin does stop the blood supply to the tumour, not 100%, but about 90%. Technically the tumours should only shrink during the first 6 months or so of treatment, but mine have continued to shrink or remain stable. For me it has been my life saver, but why the CA 125 is going up we have no idea as there is no sign of further growths, in fact stability was there when I was on Avastin/Cyclophosmide and shrinkage with the Avastin/Carboplatin.

I know people in the UK have asked for Avastin and been told it causes perforation of the bowel, so an unsafe drug. On the trials I am on there have been no perforations of the bowels and 2 patients are in complete remission whist 60% ,myself included, have responded well.

I know in the States there was controversy over Avastin for the treatment of Breast Cancer and I had heard it was withdrawn. But of course the States is in a recession just like everywhere else and I guess they are now looking more closely how they spend their money.

Has it been successful with me because of the Cyclophosmide daily tablet, I don't know. That is a very old drug initially prescribed for o/c. Obviously my next CA 125 will shed a bit more light on what is happening.

To me Avastin is a very easy alternative to conventional chemotherapy as it doesn't kill the good and bad cells as chemo does. It still however makes me very tired, I also have a husky voice with taking it and it can cause perforation of the mucus membrane. I have nasal problems anyway after about 18 nose ops, so I do have what is like a continual sinus infection without the pain. But these side effects are minor to the benefit I have been receiving so far from this drug.

In Spain, as a working person, a Spaniard will put far more money into the coffers of the health service, that is why at the end of the day there is more money available for good drugs. At the moment there is no drug that will not be prescribed to a patient that needs it, how long this will go on for I have no idea. In the words of my eminent Oncologist, the British prefer to spend more on their military than on their sick people !!

Ann xx

[ladygooner-uk]

Hi Lizzie

I was on the ICON7 trial for avastin in the UK, in 2010. I understand that NICE are looking at appoving it at the moment. I had no problems with my bowels using it, but had to discontinue it after having really bad dizziness and neurological problems ( needed to go for MRI to see if I had a stroke). I still have some effects, but its livable with- all in all, I reccomended that it be offered, as the psychological boost it gave me totally outweighed any side effects. hopefully it will be available to all oc ladies soon.

sue x