Though guidelines suggest screening starts at 50, researcher says it's premature to change them
by Gstaton on Thu Jan 17, 2013 12:24 PM
by GeeBeeEm on Thu Jan 17, 2013 03:49 PM
It's being run in both the UK, and the USA. In the UK it is for newly diagnosed patients and is given concurrent with TMZ. In the US it is being run for patients that have already completed adjuvant TMZ treatment.
I'm on it - what do you want to know?
Here are the initial results from the UK:
by Gstaton on Thu Jan 17, 2013 06:18 PM
by GeeBeeEm on Thu Jan 17, 2013 07:31 PM
On Jan 17, 2013 6:18 PM Gstaton wrote: Hi,
Thanks for your message.
I don't know anything about it so trying to get info to see if my dad should join the trial.
What do you think? I looked at the results so far and they seem positive.
Are you in the US trial?
I guess questions are
Is it working?
Anything you know that may be relevant to make our decision?!
On Jan 17, 2013 6:18 PM Gstaton wrote:
Has your father already started treatment?
Yes - I am on the US trial.
Side effects? - slight redness at the injection site, and the injection itself hurts a fair bit. No other effects although I was warned there could be 'flu-like symptoms' - I've not experienced them yet.
Is it working? - Well, I'm still alive! Too soon to make conclusions
Other considerations? - I'm a fan of clinical trials (others are not). The prognosis of this disease is pretty poor, so I figured "what is there to lose"
by Gstaton on Thu Jan 17, 2013 08:46 PM
by GeeBeeEm on Thu Jan 17, 2013 08:54 PM
On Jan 17, 2013 8:46 PM Gstaton wrote: Thanks for getting back to me.
How long along since your diagnosis??
Am I right in thinking the drug boosts your immune system to right the cancerous cells?
We are due to start treatment in 3 weeks so need to make a decision this weekend.
But same feeling as you, nothing to lose.
Is yours a recurring tumour?
On Jan 17, 2013 8:46 PM Gstaton wrote:
I'm coming up to 22 months since I originally presented with symptoms (brain haemorrhage because of the GBM). Thanks to God, I'm doing great - still work full time, etc.
I've not suffered recurrance (yet).
The drug 'trains' your T-lymphocytes (part of your immune system) to recognise the peptide "signature" of a GBM tumour.
The same company, has had pretty good results with IMA901, which is a vaccine for renal cell cancer and has received FDA approval (as an orphan drug).
Has he been tested for HLA-A*02 status yet?
by Gstaton on Thu Jan 17, 2013 09:29 PM
by GeeBeeEm on Thu Jan 17, 2013 10:26 PM
Yes, 51% of those tested for the study have the right HLA marker.
I have the standard 60 Gy of radiation with low-dose TMZ over 33 days (my NO did add Celebrex and a few other things), then did twelve months of adjuvant TMZ, along with Accutane.
by Gstaton on Sat Jan 19, 2013 09:41 AM
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