Registered: May 2007
Location:
Posts: 96

The great news today is that Sutent is working for David. The tumour has reduced 10cms either side (from what Kerry has put on facebook).

So come on NICE pull you finger out!!!!

For those who have facebook accounts there's a Cause to sign up to

http://apps.new.facebook.com/causes...iter_id=3923100

Andy

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DX:Complex Renal cycst in right kidney Jan 07
CT Scan Feb 07 Showing Bosniak IIf/III cycst
Rad Neph 23-Mar-07
Cycstic RCC Fuhr Grade 1.
http://www.kidneycancerresource.com

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Registered: Aug 2008
Location: Bristol
Posts: 17

Hi Andy
we tried the Facebook link you gave us but it came up with 'page not found',
Ange

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Ange

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Registered: Sep 2007
Location: hampshire
Posts: 294

All I got from the link you gave is:-


"You may have clicked an expired link or mistyped the address. Some web addresses are case sensitive."

though I did join a protest before on facebook so hope that it was the same one! as I passsed it around everyone I knew on there.

Jackie.

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Registered: May 2007
Location:
Posts: 96

Thanks for the heads-up folks. Hope this one works, if not I'll ave to think of some other way

http://apps.new.facebook.com/causes...iter_id=3923100

The Cause is called

"MAKE SUTENT, NEXAVAR, TORISEL AND AVASTIN FREELY AVAILABLE ON THE NHS"

Andy

__________________
DX:Complex Renal cycst in right kidney Jan 07
CT Scan Feb 07 Showing Bosniak IIf/III cycst
Rad Neph 23-Mar-07
Cycstic RCC Fuhr Grade 1.
http://www.kidneycancerresource.com

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Registered: Jul 2008
Location: Norwich
Posts: 32

Hi Andy i am pretty new to this site,but i am aware that i live down the road from David Blackett,East Careleton.My dad has kidney cancer spread to liver and rib,and getting bigger!!!!He has been denied Sutent as not available,but would be on it if it were!!!! he is getting very little treatment,recently been put on Provera,i would very much like to be in contact with David,if he would be willing but my e-mail is not working at mo.Any info would be gratefully recieved,im very scared and dont want to lose my dad,all said and done he dont look too bad at mo,surely this should b good for treatment? i hope he hasnt been written off ,being 70yrs old much love to everyone sheree xx

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Registered: May 2007
Location:
Posts: 96

Hi Sheree

Sorry to hear about your situation. What I'll do is send one of Davi'd family members an e-mail and see if I can get them to point to this thread. That way he maybe able to give you his contact details

Hope that's ok

Andy

__________________
DX:Complex Renal cycst in right kidney Jan 07
CT Scan Feb 07 Showing Bosniak IIf/III cycst
Rad Neph 23-Mar-07
Cycstic RCC Fuhr Grade 1.
http://www.kidneycancerresource.com

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Registered: Jul 2008
Location: Norwich
Posts: 32

Thanx Andy,be good to have a contact that lives soo near xx sheree

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Registered: May 2007
Location:
Posts: 96

Hi Sheree

I've sent you a private e-mail with the contact details for Sue Blacket

Hope that helps.

Andy

__________________
DX:Complex Renal cycst in right kidney Jan 07
CT Scan Feb 07 Showing Bosniak IIf/III cycst
Rad Neph 23-Mar-07
Cycstic RCC Fuhr Grade 1.
http://www.kidneycancerresource.com

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Registered: Mar 2004
Location: Cornwall
Posts: 280

Hi Sheree,

I am wondering whether you know about the private messaging system on this forum which we normaly use to give out private contact details which it doesn't pay to put on the board - there has been lots of spam problems in the past where silly little people use the emails to put up porn etc. anyway I know several of us have responded with private emails via the private messaging system and it maybe that you don't realize the emails are there waiting for you.....

if you havn't had any _ I think julia, I and David have tried to get in touch with telephone numbers etc.

reply on here if you havn't got those emails and and I'll explain how it works.....


Ange's suggestion of the C N S ( clinical Nurse Specialist) is a great one - they are so knowledgeable and kind and are there for just this sort of thinf ie contact between patient,. fanily and consultant... and ,aking sure that everyone knows what is going on ... especiallt difficult when there is such going on.


Hang in there... we will help all we can. You are doing so well trying to get through this and get your soldiers lined up but there are plenty of ways you can get help from others...

Rose W

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Rose Woodward - Cornwall
contact email - rosewoodward@msn.com

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Registered: Jul 2008
Location: Norwich
Posts: 32

Thanx Rose, i really am a thicko wen it comes to computors,for some reason my e-mail doesnt work.I have just found a p/m you sent me on here!!!!!
xx

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