Brain Tumour Survivor

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PostPosted: Thu Jan 12, 2006 7:56 am 
Registered User

Joined: Sat Oct 01, 2005 10:20 am
Posts: 11
Location: Sunderland, England
Hi, I’m Chris, am 25, am from England and am seeking some advice. Here is a brief case history:
• May 2001: dx with brain tumour
• June 2001: c. 80% resected; histology revealed II/III oligoastrocytoma
• August-September 2001: 2 rounds of PVC; the first MRI showed less contrast, the second showed no change
• September-October 2001: radiotherapy
• April 2002: 8mm ring of enhancement within the tumour. The oncologist decided to treat it with temozolomide on a 21 day on/7 days off schedule. After 3 months, a scan revealed this enhancement to be gone. The oncologist decided to continue this treatment until April 2003
• All scans clear until March 2005
• Diagnosed with a GBM in July of which 90-95% resected (2nd resection)
• September 2005: 3 rounds of temozolomide; a scan revealed the tumour had completely re-grown
• 1 December 2005: 3rd resection and insertion of glidel wafers
• Waiting until MRI in mid-January

CPT-11+avastin looks to be a promising regimen and I am keen to pursue this course of treatment. However, it is unavailable (on the NHS or privately) in the UK and my NO would not be able to administer it treatment because his insurance would not cover him. So, one option would go to the US for treatment. At least I would get the best possible treatment in the world…in the UK, NOs tend to be very conservative and I have found this to be very frustrating in the past. Which centres are currently running trials with CPT-11+avastin? Also, my wife is an American citizen…will this be of any benefit to me financially (bearing in mind I will have to pay the for this treatment privately)?

Another option could be using a different dose temozolomide e.g. 7/7, 14/14 or 21 days on/7 days off. This successfully worked from 2002/2003 (days on/7 days off)…why not this time, even though the nature of the tumour has changed. Maybe I could take it with procabazine? I could perhaps augment this with non-chemo drugs e.g. tarveca, gleevec, accutane etc?

I would really appreciate some input,

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PostPosted: Thu Jan 12, 2006 8:22 pm 
Registered User

Joined: Mon Sep 05, 2005 12:58 pm
Posts: 18
Location: Queensland Australia
Hi Chris,

There was some talk a while ago about a drug that could resensitise you to TMZ. I think it was chloroquine - an old drug for malaria treament. I've just started on the 14/14 schedule at 100mg. Due for my first scan on this schedule at the end of the month. I've also been taking cimetidine and celebrex to augment the chemo. One is an anti-adhesive preventing cell migration and the other is an anti-angiogenesis, preventing the formation of new blood cells into the tumour. Ive been taking these meds since the start of the year. It seems to be working, but who knows. It could just be luck. Mike Gabriel might be able to set you straight with all this stuff as he is a GBM buddy of mine and is right into researching every minute detail. Maybe you could contact the American embassy and question them about the cost associated with your treatment. They should be able to point you in the right direction at any rate. My fingers are crossed for you.

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PostPosted: Thu Jan 12, 2006 10:53 pm 
Site Admin

Joined: Tue Jul 19, 2005 10:12 pm
Posts: 260
Location: Melbourne
Hi Chris,

sorry to hear that you are still having issues in the UK.

The price of administration of the drugs in the US would be extremely prohibitive, I have heard of patients being out of pocket US$8000 per infusion, and there are six infusions in a "course".

I believe Duke are running trials in the US.

The drug comes from Switzerland, perhaps there somewhere in Europe that would be better placed to help you than the UK?

I do know where you could get it in Melbourne, at about 1000 pounds per infusion for the Avastin plus whatever the CPT-11 is (it's a lot cheaper than the Avastin).

I wish you the best of luck with this Chris, don't hesitate to contact us if there is anything we can help with.



 Post subject:
PostPosted: Mon Jan 23, 2006 11:20 am 
Registered User

Joined: Fri Jul 22, 2005 1:58 pm
Posts: 50
Location: Woodford, Queensland
Chris contact Dr Henry Friedman at Duke University Hospital and seek his advice about options. If you email me direct I will send you his email address.

Mike Gabriel

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