Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Feb 2012 update: see this post for details - http://www.cureasps.org/forum/viewtopic ... t=30#p3918 - Cediranib will live on for now.

Hello Everyone!

I am looking for all information stating that this trial will be shut to ASPS paitents because of financial reasons.. I am also looking for all information that has been given to anyone stating this information please. Does anyone have the states on how ASPS paitents have reacted to this drug?
Either here in this thread or please fax the info to me... MSG me i will give my fax number to you in PVT.. I will do what ever i can to make it so they hear how we feel about this .. This is not just for the paitents posting here it is for the paitents not yet diagnosed.. Please contact or post information when you can!

Can somone please post names and phone numbers or people to contact to protest this...

wow...

Hi Amanda, I'm trying to figure out something too. I have visited astrazenecas international website, and there is not even any info on cediranib and asps patients available to read.
I commented on my post how I am signed with a media agency, so I'm thinking that I could give a few interveiws, update my story, explain what astrazeneca are planning to do, and havebit printedbinternationally again, as I did before. Somehow maybe set up a webpage, where people can sign a petition, and leave a comment. Hopefully it will cause an outrage, and they will be forced to reconsider. I have an uncle who works in pharmeceuticals, and he's pretty high in his game, so, I have emailed him, to ask the best way to appeal against this decision. He may not be able to answer that question, but I'm hoping he will, with discresion.
I will update as dion as I get a response from him.
Do u think the papers idea is good?

Hi
Thats a great idea lets see what he says! I am concerned aboyt making the drug company mad an them being evil and just pulling this med away from you and the others! So we cant let that happen... i am mixed on wether to hit them hard so wave a finger at them :/

I posted my reply in the wrong subject, iv posted my uncles response and plans in my 'katrina on cediranib' page. I don't know how to transfer, or copy it over.

I will go there and look

Ok.....so action I have taken.......
I have emailed David grabbing- cheif executive officer of astrazeneca global. I have my uncle asking questions from where he's based in London about ootioning continuation of supply, and if an appeal could be successful.
I have just emailed Professor Ian Judson at the Royal Marsdon Hospital in London who is actively involved with all trials, asking for advice on avenues to take, and his support in the matter. Tomorrow I will be contacting my media team, and see if they are interested in doing a print up, as they were wanting to print an international update on my situation anyhow.
I will inform as soon as I hear back from anybody.

ok...so just to let you know, that Prof Judson is away until 20th, so he shouyld respond to my email over the coming week depending on his work load. I have also emailed my media management, so should be able to arrange something with them tomorrow.

has anybody else actually taken action and done anything in any way yet?

Dear Katrina,
Thank you for all of your very energetic, positive, and pro-active efforts thus far in trying to generate interest and support for this critically important issue which has such extremely serious implications and long term repercussions for EVERYONE in the ASPS Community, not only those who are currently participating in Cediranib Clinical Trials and benefiting from the drug. I have been reaching out to as many people as possible to share the information regarding AstraZeneca's devastating decision to discontinue development of Cediranib, and once I have received some feedback from Yosef Landesman and the oncologists who I have been in contact with, I would like to go forward with contacting the American media to raise an awareness of the situation. However, we CANNOT do this alone with just a couple of us trying to launch an appeal and achieve a reversal of the decision! There is strength in numbers, and we need EVERYONE in the ASPS Community to come together to help! Hopefully, many more people will get involved and have some other ideas,resources, and/or personal connections to share. In the meantime, I will be anxiously awaiting your update on the outcome of your current inquiries to David Branning, Professor Judson, your uncle, and your Media Team.
With deepest gratitude for all that you are doing, special caring thoughts, and continued Hope,
Bonni

I completely agree Bonnie, EVERYBODY need to get proactive, and just do something. Even if they send an E-mail to david branning. Im thinking that if we just make clear that we are people, not numbers, and if everybody was to write their own personal atory, and how cediranib has/is worked/working for them. Then patients who are looking to cediranib as a line of treatment in the future to explain how this was their hoope oo. Thats what my letter to david branning outlined, if everybody was to do the samem they may just realise that theyu are dealing with people, not just data and numbers.
I am hoping that my media company will work with me on thsi and print worldwide as before, then I will open an online petition, with info in the story printup of how to sign, and hopefully people worldwide will sign, and well have such cast numbers of outraged people, they will be forced to reconsider.

HI GUYS,
SO AS I HAVE SAID, I EMAILED THE CHEIF EXECUTIVE OFFICER AT ASTRAZENECA, AND I REVIEVED A RESPONSE TODAY CLARIFYING THEIR PLANS.
I HAVE COPIED AND PASTED THE EMAIL DIRECTLY WHICH IS AS FOLLOWS:


On Jan 20, 2012 9:02 AM, "Fisher, Graham V" <Graham.Fisher@astrazeneca.com> wrote:

Dear Ms Palmer,

We are writing to in response to your email received via AstraZeneca.com Contact Us that you sent on 18th January 2012.

We fully understand your deep concerns around the continuing supply of cediranib after the end of 2012 and hope to be able to clarify the situation for you.

The development of the drug has indeed been ceased. This is because data emerging from our clinical programme indicated the development of the drug in our primary indications could not be supported, this decision was driven purely by the emerging clinical data versus our ability to overcome the regulatory requirements needed to register cediranib. Of course we recognise there are some patients who derive benefit from the drug and with this in mind our protocols and informed consent were written to allow some flexibility.

Hence we have indicated that in patients who continue to derive benefit from the drug after the completion of the trial, they may continue to receive cediranib. The decision to do this will depend on the Investigator's assessment of benefit in consultation with our Medical Science Director.

Therefore, in your case, should the Doctor running the cediranib trial at Bristol Haematology and Oncology Centre recommend you continue to receive cediranib after the closure of the trial – which will be based upon their assessment of your response and benefit from the drug - and our Medical Science Director agrees with their assessment and recommendation, there is a mechanism in place and a willingness to enable this to happen and continue to supply cediranib to you beyond the end of 2012 should the trial close at this point.

What we have to be transparent about is, of course, we cannot guarantee supply of the drug for an indefinite duration since this will depend upon our residual stocks of cediranib and the expiry date.

I sincerely hope this clarifies the position and helps to alleviate at least your immediate concerns.

We are delighted you are benefiting from the drug and genuinely hope you continue to do so. We wish you and your family well.

Yours sincerely

Marcello Marotii. Medical Science Director

Graham Fisher. Clinical Programme Director

Graham Fisher Section Director/ CPD for Cediranib ____________________________________________________________

I have very mixed feelings about this reply...
it is not just up to your Dr it is also up to theres even after your Dr says you need it! I would be interested to know how many are on this drug and stable and how large a suply they have of this med.. If anyone reading this happens to know this information it would be nice if you posed it here..

Though I am not holding my breath an to be honest I am very very upset that i started this thread an only two people have posted or stated they are even going to try and help!
What happened to our ASPS family???

Ok guys......I have some further information of what plans are set in place for the intellectual property of the cediranib trial, which sounds very promising. It very much makes sense with what my inc told me when I started the cediranib trial. He had mentioned how the cediranib would not be available to me, because it seems America is buying the trial from astrazeneca. So fingers crossed, you guys in America and anybody who can afford to travel to us will be in reach of cediranib still after it is discontinued by astrazeneca.
So I will as before copy and paste a response I had from Prof. judson over here based at at the royal marsdon hospital in London.

This is the email I had in response from Prof.Judson. I asked him if he had any additional information, or any ideas on avenues to take, but it seems I have already contacted the correct people whom have involvment of the trial at this stage. Prof.Judsons promising response is as follows:



Dear Katrina

Of course we are all concerned about this. There are a number of things to say. Firstly, if the trial is successful we will have further reason to hope that the drug will be approved for the treatment of ASPS and that someone will take over responsibility for manufacture, formulation and distribution. Secondly it is possible that the National Cancer Institute in the USA will assume this responsibility in the interim. I have been talking to colleagues there who are very keen to do this, although I haven’t heard anything concrete recently.

I assure you that we will do everything we can to keep this treatment option open.

Yours

Ian