Possible recurrent GBM - Delta 24 clinical trial

Hi Hux,

Actually the BSI 210 was found(last month )  NOT to be a Parp Inhibitor, actually they do not know how it really acts but they are sure of its good activity as an anti-tumoral drug. It has to be taken along with the Temodar, before Avastin. Those who have taken Avastin are not accepted in the Trial.

As all vaccines , so far, have not proved their efficacy ( but I pray everyday for THE drug ) is a very good choice this one. It is extremely well tolerated. 

If I can be of any help please just let me know.

Cris

Cristiana, why is the BSI 210 not given if you have had Avastin?

Thanks, Vicki

Vicky I am not sure but that's the protocol.

I think Avastin is used after some other medications.

I am seeing with my own eyes that is a GOOD medication , who knows it is not something we've been waiting for ??

I want for you what I wish for me !!

Always here

Cris

Everyone, thank you for the input.  We have thought about the vaccines, but without being sure that it's tumor rather than necrosis, it's difficult to know if we can go that route.  We have not had any genetic testing done on the tumor.  Dave is doing well and could travel, but since we live in Texas, the additional travel costs could really add up if we go somewhere else, since there are many follow-up visits with different trials and vaccines.  

We have been and continue to be very impressed with MD Anderson, and are happy to stay there - I was just wondering about information on this specific trial compared to others.  

Dr. Lang, who is running it, said that so far they have had 24 people on it, and overall, they have done very well.  One woman is 16 months out from her initial recurrence with no sign of a new recurrence.  

I'm sure that somewhere between the vaccines, immuno and virotherapy, there will be an answer, but since nobody knows which one it is, it seems like we have to gather as much information as possible and then pray about it and go forward in faith.  

This is a roller coaster, and we're all trying to figure out how to come to the end of the ride safely.  It's great that we can all help one another along the journey.

GBMhubby, I just wanted to say thanks for all of the detailed information you contribute - I've learned a lot from reading your posts (and others as well) but I appreciate that yours are referenced and it gives me a good starting point for more research.  

I read a lot of information on the Delta 24 trial and it appeared to be very promising.  A couple things I would check on:  1) did you read how often you must commit to subsequent testing at their hospital, and would such continued testing be affordable to do?  We live in Colorado, so the travel to MDA would be costly; 2) Are they sharing any of the current clinical data from those who started this trial many months ago?  The primary importance is that there are other scientific articles that suggest the successful tests done on mice are not translating to humans in a significant way with GBM.  Apparently there are several studies that offered glowing results for mice, but failed to deliver similar results with humans.  This trial has been open for a long enough period of time that they ought to have some indication of the performance; and 3) If they offered the Delta 24 Trial to you, then apparently you have the correct methylation status, but if you were just reading about it, I recall (perhaps incorrectly) that they preferred methylated patients, not unmethylated ones, so that might require double-checking; and 4) will the radiation damage his cognitive/physical ability to the point long-term survival will not be what you imagine?

At any rate, kudo's to you for searching it out. I got really excited about that trial, but we have not had recurrence yet, so we are encouraged to wait until that happens.  In the meantime, I continue to research  everything that could be helpful.

Good luck! 

Just wanted to update everyone here on the results of the trial. Dave received the injection in February, and we believe that it was working fairly well, although slowly. He ended up having explosive growth in his original frontal lobe resection cavity which then overwhelmed the injection site in the parietal lobe, and he passed away on June 18th. The original survivor I mentioned previously is now at 21 months and is still doing well, as are some others on the trial. We don't regret participating in the triall, and I'm satisfied that we did the very best we could given the incredible difficulty of the journey. Thank you to everyone for your support and generous information sharing - it made a hard time more bearable.

I'm sorry cdolive.

I agree with Huxley, that a vaccine would be the best choice. Unfortunately ICT-107 and DCVax are for newly diagnosed only. There are two other recurrent vaccines that you could look into TVAX and CDX-110. These are both in phase II. The CDX-110 testing can be done by filling out a form and faxing it to a hospital in Florida. If interested I can send you the contact info for the phone consent.

Heather

Sorry to for you loss. I posted the last message not having read all the replies. So sorry.