gbm treatment in the UK

My partner has gbmIV inoperable at age 40.

Does anybody know where in the UK can I get an Avastin+CPT11 treatment for my boy and how much does it cost?

 We have no other option as it has grown so big after relapse during Temozolomide treatment

Thanks all  of you

It would seem the drug company has not approved it for much in the UK. Will write you a private reply.

On 10/17/2009 maja76 wrote:

My partner has gbmIV inoperable at age 40.

Does anybody know where in the UK can I get an Avastin+CPT11 treatment for my boy and how much does it cost?

 We have no other option as it has grown so big after relapse during Temozolomide treatment

Thanks all  of you

I am sorry.  There is the nova cure, it is a device that is attached to the skull and a power pack is carried.  Please google it.  Go onto Yahoo groups.com and go to brain-research group.  There is a lot of chatter on this site and this treatment has an incredible 5 year survivial of something like 50%.  Al Musella is the moderator of this site and is very involved in trying to get the clinical trial that is going on to accept relapses, but not so far only newly diagnosed.  Al Musella started and maintains the clinicaltrials.com site .  The device will be available only in Europe.  UK, Ireland.  Please go onto that site and search for it.  It seems like it would be annoying yet very much worth the extra time and not toxic.  You can also google it. Don't give up.  God Bless you and your son.

Donna, Rob's wife, dx 12/08, recurrance 7/09 and 10/09

Sorry I said your son, meant your partner and it is Novocure.

Donna

Hi maja,

Look at Duke Cancer website (link below).  Their longest living survivor is from (and lives in) the UK (15 years out)  It might be a good place to make contacts.  They do Avastin trials all the time...perhaps you can get your guy into one of those.

http://www.dukehealth.org/Services/BrainTumor/About

In the meantime, you are in our hearts and prayers,

janni (wife of Steve age 57, gbm iv dx 11/07) 

Dear all, Thank you for all your replies,

This is so horrible and NHS has sent us home saying that they can not do anything!!!!, how can they say that!!!! Since my partner has been diagnosed we are experiencing extremely difficulties to get organized anything through NHS in this country!!!!

God bless all of you

On 10/18/2009 maja76 wrote:

Dear all, Thank you for all your replies,

This is so horrible and NHS has sent us home saying that they can not do anything!!!!, how can they say that!!!! Since my partner has been diagnosed we are experiencing extremely difficulties to get organized anything through NHS in this country!!!!

God bless all of you

Hi

Have you had any luck with any clinical trials in the UK

My mother has an inoperable gbm and the NHS has also told us there is no more that they can do!

Any info would be greatly received, Im also here if you'd just like to chat

Wendy