Although most said they'd let their physician know if asked, survey finds
by jackiemordaunt on Fri Jun 08, 2012 05:14 PM
I am desparately seeking RELIABLE information on vaccines...
In 2006 my then 21 year old daughter was dx astrocytoma 2 and had 95% resected. Now after 2 more resections, a 2nd Str. Radiation and a limited amount of chemo (temodar and CCNU), it morphed this Jan. to a GBM 4. (She has some Avastin which worked well but had to stop due to her head wound not healing properly - however it looks better now and could maybe resume Avastin).
I started researching vaccines when this site posted the first compassionate use for DCVac-Brain. I really want to look at which ones are the best by trial or commpasionate use, not has the most media exposure. Is DCVac the best???
There is at least one for recurrent GBM 4 (TVI-Brain-1), I believe she would qualify. Also I think a phase 2 or 3 trial is always better.
Can anyone give me information or tell me where I might be able to find the clinically most successful vaccines???
Thanks in advance for your help!
by huxley2006 on Fri Jun 08, 2012 06:18 PM
There are no viable studies out there comparing the effectiveness of each vaccine to one another. Really it’s more or less a trial and error process. This sort of personalized medicine is really in its infancy.
My understanding (like all other BT treatments) is that there isn't any way to predict what will work for whom specifically. This is not to dissuade you from trying
the initial studies on the ICT-107, CDX-110 and DCVax are encouraging.
Its more or less about hedging your bets and being lucky when it comes to these treatments. As the vaccine has very little side effects and some people do very well with it that is more or less a bet I would be willing to take. I am sorry if this sounds like I am making light of it but as far as my experience has been it more or less the reality.
I think the same rules apply as with any treatment decision. Find yourself the best facility with the best surgeons and get second opinions.
by johnlane45 on Fri Jun 08, 2012 11:01 PM
The only compassionate use available that I am aware of is with Northwest Biotherapeutics and DCVax in England through Kings Hospital and Germany through Fraunhofer Institute. Both are very prestigous medical research orgainzations that have partnered with Northwest on the DCVax vaccine. I would go to Northwest web site atwww.nwbio.comand you can call their main number or email them from the contact us section of their web site to inquire about compassionate use. Good luck and god bless!
by hmugm9 on Fri Jun 08, 2012 11:34 PM
The DCVax is the only vaccine available through compassionate use. I don't know all the details, but I think the cost is around $100K. Your daughter would need to undergo another surgery to get a sample big enough to make up the vaccine. The median survival for newly diagnosed patients was 3 years in there phase I (I don't remember the sample size but it was probably around 20)
The TVax also requires a surgery but she would qualify through the trial and it would be free. The median survival out of 19 patients was 12 months for the phase I trial. They are in phase II now. Keep in mind this is a recurrent trial so there are a lot more variables that go into the median survival.
ICT-107 median survival of 16 patients 38 months for newly diagnosed in phase I. Your daughter would only be eligible if she were newly diagnosed. It is not available for compassionate use.
CDX-110 median survival was 24 months in 65 newly diagnosed patients. There is currently a phase II recurrent trial that your daughter could qualify for. Surgery is NOT required. Since your daugther has already taken avastin she would autmatically get the vaccine and it would not be blinded. Here's the catch...She has to have EGFRIII mutation and 30% of GBM patients have it. The good news is she can be consented over the phone and they request slides without you having to do anything besides sign a form. I can give you the contact information for the consent person if you are interested. I think this trial would be the best option for your daugther at least see if she qualifies unless you can afford the DCVax.
Another non-vaccine option is Novocure. It is a device that she would wear, but it is commercially available and she can get it without being part of a trial. You could obviously get this at any time.
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