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TOPIC: NovocureTTF
#1447
AnoifPete (User)
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NovocureTTF 9 Years, 5 Months ago  
Has anybody out there in the UK or elsewhere got firsthand experience of using the Novocure TTF device ?

www.novocuretrial.com/

My husband Peter has applied to the Paris centre to take part in the trial and we are trying to find out more from patients or their carers who are using it currently.
 
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Fiona w/o GBM warrior Peter
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#1451
Natalya (Admin)
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Re:NovocureTTF 9 Years, 5 Months ago  
Hi Fiona,

Not sure if this will be of any use to you or if you have read it already but this is a short paragraph a friend wrote on NovocureTTF:

# Novocure-TTF or Novocure-TTF + TMZ - In a small single-arm study (Kirson et al 2008) of 10 patients with newly diagnosed GBM, 4 of which had gross total resection, standard radiotherapy + TMZ was followed by Novocure-TTF + TMZ for up to 18 months. At the end of the study, median survival had reached more than 40 months, with 8 of the 10 patients still alive, and no serious side effects were reported. Although this is a small study, it is striking that this median survival far exceeds the historical value of about 15 months associated with standard radiotherapy + TMZ, followed by TMZ alone. In another small study (Kirson et al 2007) of 10 patients with recurrent GBM, using Novocure-TTF without concurrent chemotherapy, a median survival of 62 weeks (after start of treatment) was reported at the end of the study, with 3 of the 10 patients still alive, and no serious side effects were reported. This median survival is more than double the historical value.
 
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#1454
AnoifPete (User)
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Re:NovocureTTF 9 Years, 5 Months ago  
Thanks Natalya,

I should have been more specific in my request.

We have read all the published research papers by Kirson et al on Tumour Treating Fields. We have also read NovoTTF articles on Virtualtrials etc. We think it is a treatment worth trying if we can.

Paris have given us a provisional date for screening Peter subject to confirmation from his Onclogist that he meets the criteria. The Oncologist has agreed he does, and promised to write a letter. We know that when we go to Paris Peter can still be rejected if their tests find fault with him. We also know that he can be randomised into the control group. However in case he is lucky enough to get to trial the device we had other questions.

We are trying to find out more about the day to day experience of using it from people who have been or are using the device.

Does it make them tired ? Soreness of skin ? Difficulty putting on or taking off electrodes ? Any other side effects or things to be careful of ? any tips on what to ask the trial people ?

Thanks for any replies,

Fiona
 
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#1455
Natalya (Admin)
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Re:NovocureTTF 9 Years, 5 Months ago  
Hi Fiona, I have sent a few messages around and hopefully someone will get back to you about it here soon.
 
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#1456
AnoifPete (User)
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Re:NovocureTTF 9 Years, 5 Months ago  
Thanks Natalya
 
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#1509
AnoifPete (User)
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Re:NovocureTTF 9 Years, 4 Months ago  
Update on NovoTTF trial.

We came back from Paris earlier in the week. Peter passed all the standard screening tests for the NovoTTF trial, but they had a concern about his Ommaya reservoir. They wanted to have discussions with people at the Novocure labs before taking it further.

They have not had any other GBM patients with an Ommaya and they are concerned that there is a risk that if he gets broken skin from dermatitis (a common side effect of NovoTTF) he might get an infection in his brain via the Ommaya. There was also some uncertainty about what materials had been used in and around the Ommaya, (any metal might interfere with the device)which we needed to get clarification from his surgeon in Oxford on. Therefore after a lot of debate and discussion behind the scenes they called us this afternoon from Chicago (the Paris doctor was at ASCO) to say that Peter cannot do the trial.

We are fairly disapointed particularly as yesterday at ASCO they published the results of the recurrent GBM phase III trial of NovoTTF and its looking pretty good.

abstract.asco.org/AbstView_74_47572.html

Otherwise everyone was very nice, and helpful. We can thoroughly recommend Paris to anyone wanting to try for the NovoTTF trial for newly diagnosed GBM.

Still gonna keep fighting...

Fiona
 
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#1510
Natalya (Admin)
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Re:NovocureTTF 9 Years, 4 Months ago  
Hi Fiona,

So sorry to hear Pete couldn't be part of the trial. Have you guys had time to think about your next options?

Thank you for the very comprehensive information on this trial, I really appreciate it. I am away at the Teenage Cancer Trust conference Till Thursday but when I get back would it be ok if I dropped you an email with a few questions about the whole process you guys went through?

If there is anything I can do to help please don't hesitate to contact me.

Your BT Buddy

Natalya
 
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#1521
AnoifPete (User)
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Re:NovocureTTF 9 Years, 4 Months ago  
For Anyone out there who is interested in this trial here are some links and information:

The trial is open to anyone with newly diagnosed GBM. You have to join the trial within 4-7 weeks of completing Radiotherapy. Therefore you need to apply during Radiotherapy. The nearest centre is Paris, but there are other centres in France, Germany, Austria and Italy

The trial uses the NovoTTF device alongside Adjuvant Temodal. The device is worn externally on your head and has no known side effecs except skin rash (dermatitis) of the scalp.

The Novocure trial details are available here: www.novocuretrial.com/
And here: clinicaltrials.gov/ct2/show/NCT00916409

The relevant paper for NovoTTF alongside adjuvant Temodal is here : www.biomedcentral.com/1756-6649/9/1

Paper explaining how it works and detailing phase I trial of recurrent GBM is here : www.pnas.org/content/104/24/10152.full

Abstract published at ASCO this weekend outlining results from previous NovoTTF mono-therapy V chemotherapy of choice phase III trial (237 patients) for recurrent GBM : abstract.asco.org/AbstView_74_47572.html

Daily News digest from ASCO had this highlight: www.asco.org/ASCOv2/Meetings/2010+ASCO+A...current+Glioblastoma

There is a video (from ITV news) of a man being fitted with and wearing the device here:

Or if you prefer a photo on a dummy here: www.prnewswire.com/news-releases/success...astoma-95682179.html

The trial of the device is free, however there are extra costs of participating in the trial:

1) Travel to Paris 1 day per month
2) MRI every 2 months (this is part of standard treatment in Europe, so is not covered by the trial, but is not standard in the UK - however it is cheap in France approx 250 Euros)

Hope someone can benefit from this - it came top of our list when we researched what was out there.

Also if it gets approved in USA soon for recurrent GBM we need to lobby for it to be approved here in the NHS.
 
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#2063
HopeMichelle (User)
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Re:NovocureTTF 8 Years, 6 Months ago  
Does anybody have any up-dates on this trial ? i am new to forum and am not finding it easy to navigate, how do you contact an individual user?
 
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#2064
Natalya (Admin)
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Re:NovocureTTF 8 Years, 6 Months ago  
Hi,

You can find out more about the trial here www.novocuretrial.com/

I know that Pete's tumour recurred again recently so I am not sure whether Fiona will be checking in here. If you would like to contact her I'd be happy to pass on your email. You can send it to me at natalya@btbuddies.org.uk

Your BT Buddy

Natalya
 
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