Phil, Are you on this trial because other treatments didn't work? Did you do the Temodar and radiation, then what? This all sounds very interesting and if it works, then GREAT!

I'm so glad that you are making it through this without too much trouble, keep up the good work.

God Bless You!

Barbara

Awesome Phil, I am so glad everything went so well with very little difficulty. I was really anxious to hear how you were doing. Thanks for all the information regarding this treatment, I found it to be very interesting. I pray that this works well for you. You are such a trooper!!

Oh, sorry. I'd introduced myself before, but I don't post so much, so it has been a long while since I posted my history.

I was diagnosed Feb 2006 with a GBM in my frontal pariatal lobe and a grade 3 ogliodendroma in my frontal lobe, both on my right side of my head. I had surgial resection at UPenn in Philly that was very sucessful on both,

did 7 weeks rad with Temodar, plus 2 cycles of Temodar after that. While on that regular protocal, I was also on a Phase II Poly-ICLC clinical trial at UPenn, since the trial was radiation+temodar+intramuscular injections of Poly-ICLC 3 days a week - basically the regular treatment plus a boost already shown not to make the regular treatment less effective. Poly-ICLC is a drug (and the trial might still be open) for newly diagosed GBM patients that havent had chemo or rad, I think.

I was stable for 2 cycles of chemo after radiation, and my original GBM site was stable, but then, an MRI in late October showed some more activity in my Grade 3, and although it seems like my GBM went into remission, I grew another nearby (but not in the same bed).

The grade 3 is very slow growing, so the phase 1 trial is directly adressing the new (but thankfully smaller than the original) GBM tumor. There is also som scientific interest and medical hope that if this Cotara drug works very well, and if the grade 3 and 4 are connected by tendrils that don't show up well on the MRIs, that the drug might diffuse along them and treat that tumor, too. It is unlikely, but not impossible, and at the least, intersting.

First post in the thread brings us to present. The Cotara is for recurrent GBMers, I think.

Hey Phil I have a question for you. I met with my neuro surgeon a few weeks agao and he had mentioned that sometimes they are showing if on chemo for to long it can cause a new tumor...Didi the 3 come after all this? Or together? Fill me in when you get a chance.
Thanks
C

My first 2 tumors (a grade 3 and a grade 4) came from out of nowehere, and were found at the same time on my first diagnosis. I was healthy before that. Both were surgically removed at the same time from diffrent sites on the same side of my head with pretty good success in terms of percentage taken out.

Then came Temodar, radiation, and the Phase 2 poly trial to treat both of the two tumors/tumor reminants concurrently.

The radiation+low dose temodar (initiation cycle) was 7 weeks, then I had 1 9 week cycles of 5-days-on-28 days off high dose temodar (maintenence cycle), with clear scans after both the maintenence cycle and after the first initiation cycle.

Following my 2nd 9 week cycle, my scan showed some regrowth on the grade 3, remission of the old grade 4, and the growth of the new grade 4.

So prior to regrowth, I was only on the temodar for standard 7 weeks, plus another 2 cycles (additional 4 months). Most doctors don't take you off of it if you are stable until you have been on it at least months, sometimes even a year, so I don't think the duration I was on temodar had much to do with it.

Hey Phil.....I am so happy things are going well for you.....I did read what you posted a bit ago about cotara and found you to be a brave one ....there are not too many out there that would enter a phase one trial....you are an inspiration to us all.....keep on fighting.....take care and keep us posted.....hugs to ya.....Angel
dx 4/06

Refering to Cotara (chTNT 131I)a Phase I trial is somewhat misleading. It has already been through Phases I and II using both intratumural and intravenus injection. The intratumal was chosen as the delivery means for a Phase I REGISTRATION trial. A registration trial allows data to be sent to the FDA as soon as it becomes available instead of waiting for the trial phase to end. If the data is good, a company can market it while the trials continue. A version of Cotara is already approved in China for lung cancer and they are conducting trials on other cancer forms also.

Cotara becomes more effective with each use:
Another potential advantage is that each successive treatment with TNT potentially kills more cancer cells, expanding the necrotic area of the tumor, thus becoming more effective upon subsequent doses, contrary to conventional chemotherapy, which may lose its therapeutic effect due to increased drug resistance. The TNT targeting mechanism could be the basis for an entire class of new products effective across a wide-range of solid tumor types, including brain, lung, colon, breast, liver, prostate and pancreatic cancers.
http://www.peregrineinc.com/content.php?mi=NTY=

Phil, after reading about you in the 2-22-07 UPENN article:
http://www.uphs.upenn.edu/news/News_Releases/feb07/brain-tumor-trial.html
. . . and all your completely unselfish postings here on YASG, I must tell you how impressed I am with your spirit, your determination, and the human warmth of sharing & giving that clearly empowers you.

As you continue on with your NABTT/Cotara treatment followup, I wanted to share WITH YOU the uplifting Jerod Swan & Freddie Sanford Cotara success stories that began during the prev. Cotara brain cancer trial that you mentioned in your 10-26-06 post (patients of Dr. Jensen/UnivUTAH & Patel/MUSC).

I. The Jerod Swan Cotara/Brain Success Story (8 years survival):
=> http://web.ksl.com/dump/news/cc/uthealth/tumor.htm
4-19-02: JEROD SWAN, PATIENT: “EVERYTHING I AM AND ALL I DO NOW IS BECAUSE OF IT YOU KNOW - AND I'M JUST VERY THANKFUL TO BE ALIVE.”
*6-16-06*: The good news is that as of today, Jerod is doing very well… living in xxxxx. From all appearances, the TNT drug approach to his cancer worked.”

II. The Freddie Sanford Cotara/Brain Success Story (6 years survival):
=> http://archives.postandcourier.com/archive/arch05/0605/arc06172381169.shtml
6-5-05: “He was one of 51 patients to be treated over the past 7 years at MUSC in a study with a "convection-enhanced delivery" of a drug called Cotara… 3.5 years later, at 46, Sanford's still alive, making him a member of a very small group.”
6-5-2005: “I think you've beat the cancer,” Dr. Sunil Patel of MUSC told him. Freddie Sanford already has passed the 5-yr threshold, and scans of his brain show there's no tumor left, following treatment by a drug called Cotara.”
*6-16-06*: “Sanford still alive and doing very very well indeed!!”

Phil, may you be the next Jerod Swan / Freddie Sanford! Advances are being made in these new treatments all the time. This NABTT version of Cotara has improved the delivery method and probably the dosing regimens over those that led to Jerod’s & Freddie’s successes.

Read and enjoy these stories. They are real. Hope improves with each passing day. THE BEST TO YOU.

The Jerod Swan & Freddie Sanford Cotara Success stories, with (hopefully) clickable links.

I. The Jerod Swan Cotara/Brain Success Story (8 years survival):

4-19-02: JEROD SWAN, PATIENT: “EVERYTHING I AM AND ALL I DO NOW IS BECAUSE OF IT YOU KNOW - AND I'M JUST VERY THANKFUL TO BE ALIVE.”
*6-16-06*: The good news is that as of today, Jerod is doing very well… living in xxxxx. From all appearances, the TNT drug approach to his cancer worked.”
http://web.ksl.com/JerodSwan

II. The Freddie Sanford Cotara/Brain Success Story (6 years survival):
6-5-05: “He was one of 51 patients to be treated over the past 7 years at MUSC in a study with a "convection-enhanced delivery" of a drug called Cotara… 3.5 years later, at 46, Sanford's still alive, making him a member of a very small group.”
6-5-2005: “I think you've beat the cancer,” Dr. Sunil Patel of MUSC told him. Freddie Sanford already has passed the 5-yr threshold, and scans of his brain show there's no tumor left, following treatment by a drug called Cotara.”
*6-16-06*: “Sanford still alive and doing very very well indeed!!”
http://web.ksl.com/FreddieSanford

PS: I won’t know if the links will be “clickable” until after I post (from what I can tell, Preview doesn't really work), but if they happen to work, here’s how I learned how to do it:
http://www.ncsu.edu/it/edu/html_trng/html_links.html

Hi Phil,
Even my wife who is 37 years old has taken the Cotara treatment. She was treated in February. Post the treatment she sleeps a lot and is not able to maintain her balance and posture. She is not able to walk without support. Her memory goes blank at times but at times she remembers events which had occurred 10 years ago.

If you could please tell me how you were after the treatment. After how long did your normal life began.

The current state of hers disturbs me a lot to see a lively woman six months ago has turned into a life which I cannot see at all.

Your reply would be very heartening to my wife and may infuse new energy into her.

Thanking and hoping the best for you

Sandeep