Found the trial today on clinicaltrials.gov
A Proof of Concept Clinical Trial Assessing the Safety of the Coordinated Undermining of Survival Paths by 9 Repurposed Drugs Combined With Metronomic Temozolomide (CUSP9v3 Treatment Protocol) for Recurrent Glioblastoma
I notice the trial is going with the CUSP V3 instead of CUSP V4, ie: Ritonavir not Quetiapine.
ReplyDeleteWe have shifted my brother to the V4 at this time and wonder if we should continue along that track.
FYI:My Brother has been on CUSP9v3 and now V4 since oct/nov 2015,
Even though the dosing has been a little erratic because of him moving from hospital to hospital to rehab the scans have
shown consisting shrinkage (he is GBM unmethylated). Seizures and the AEDs and DEX have been the cause of most of the issues he has had. The only issues caused by CUSP 9 have been elevated liver enzymes which required a break from Itraconazole once and a while.I blame everything else on DEX and AEDs,which we have been trying to reduce whenever we can.
Diagnosed with GBM/4 Aug 14 2015 biopsy only,standard radiation/tmz then metronomic tmz then CUSP9 v3.
Surgery march 2016 to remove necrotic tissue & make room etc. No live tumor seen in removed tissue.
Other issues have plagued him through this time starting with seizures that kept him in hospital since Jan 2016
because of the seizures and treatment he lost use of arms and legs then became no responsive for the most part.
The surgeon decided to operate to remove as much necrotic tissue as possible and drain the cysts,He did a greatjob (the surgeon that only did the biopsy had said surgery was not possible)After several my brother had not gotten worse but had not improved much,ICU said they would not take him again and said this was the end.The surgeon said he hadn't given up because the tumor was shrinking so we started dropping the AEDs and other drugs,started feeding him better food through his nose.Three days later he suddenly started to improve and continued to improve for several months
b the end of june he was at a rehab center walking talking writing etc, then in early July he had a seizure, treatment once again (AEDs and DEX)have once again knocked him down
again and he is to weak to walk,he also has trouble making sense. The most recent MRI(mid July)shows the tumor area even smaller. We have been working to get him back to where he was and have seen some improvement but feel the incompetence at the rehab center is making it difficult.
He will be going to be moving back to the hospital near our
oncologist so we can get back to proper treatment.our plan B is PD-1 checkpoint inhibitors.
Note: Both our surgeon and oncologist supported us using CUSP, they and another Oncologist were so impressed
with the response to the CUSP9 that they have put several patients on it.Unfortunately one died from diabetic shock that was caused by, you guessed it DEX.
Hi Terry, my husband is considering this trial..how is your brother doing? May I ask you where you live ?
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