The Beast is Back

After 16 months of Avastin, and basically symptom free living, the Beast is back, thus Avastin no longer working. Round three begins (round one surgery/Temodar/radiation, round two Avastin). We find out more on Tuesday, July 17th, but husband has been offered inclusion in NIH clinical trial     http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2011-C-

This is a highly experimental gene transfer study that takes the patient’s own white blood cells, adds a retrovirus to them, grows the new cells in a lab for a month, then infuses them (the genetically altered cells) back into the patient. One doctor called it a ‘smart bomb’ against GBM tumors that targets and kills the GBM cells – if it works. 

I'm so sorry to hear that it's back.  We just got news of the same fate last Wednesday.  I hope the new plan works for you.

Hi Future, sorry to hear you're at second recurrence. So are we. My first thought on looking at that study is "Well, we wouldn't do that because my sister's tumor doesn't express EGFR." So... does your husband's tumor? If you don't know then a FISH analysis would tell you, I think... Good luck.

Hi Siblingof, yes his tumor does express the EGFR; I guess they knew because of the initial tumor removal and ran tests on it? I had never heard of this marker (or whatever it is) until NIH told us about it. It sounds solid, and what if it works? than other tumors that express other markers would be eligible for target and destroy from a patient’s own white blood cells. The science sounds solid to me. but the risks that are involved... My husband wants to so this, and I will stand by his decision.

On Jul 15, 2012 2:28 AM future2020 wrote:

Hi Siblingof, yes his tumor does express the EGFR; I guess they knew because of the initial tumor removal and ran tests on it? I had never heard of this marker (or whatever it is) until NIH told us about it. It sounds solid, and what if it works? than other tumors that express other markers would be eligible for target and destroy from a patient’s own white blood cells. The science sounds solid to me. but the risks that are involved... My husband wants to so this, and I will stand by his decision.

I read the Clinical Trial details and it sounds solid. Some Clinical Trials do what's called a Double Blind Study, meaning only 1/3 of the patients get the real drug treatment, the others get a Placebo (Water or something fake). You might ask about that here.

This sounds like every patient involved gets all the new treatment. That's really good news.

My Best

John

http://liveforeverwithcancer.com/

Future, yes, the science seems solid to me as well. EGFR stands for epidermal growth factor receptor... and yeah, they would've found that out from an analysis of the original tumor. So yeah, I think this seems like a good route to be pursuing.

Please keep us posted.  Best wishes the trial adds much time and he can continue to enjoy "symptom free living".

Pam

Hi

 Husband is scheduled for Apheresis (to have the white blood cells separated out) at NIH in Bethesda, on July 26, 2012. Supposed to take up to five hours to get these cells. Spoke in-depth with the researchers yesterday; apparently this method has worked wonderfully with melanoma. Husband is gung-ho and so am I!

Future2020

My husband has been on Tarceva for several years. It is an EGFR inhibitor  that is used to treat Pancreatic and Non small cell lung cancer.   When he had his surgery in 2004, there was not a test done to see if his tumor expressed the EGFR.  But his neuro oncologist believes that the Tarceva is likely the reason hubby has done so well.   The first couple of years insurance did not cover it and the Tarceva was provided at no cost by the pharma company.  Now his insurance coveres it, but still very pricey copay.

Good luck

http://www.tarceva.com/patient/considering/about.jsp

Laurie V

On Jul 18, 2012 5:56 PM future2020 wrote:

Hi

 Husband is scheduled for Apheresis (to have the white blood cells separated out) at NIH in Bethesda, on July 26, 2012. Supposed to take up to five hours to get these cells. Spoke in-depth with the researchers yesterday; apparently this method has worked wonderfully with melanoma. Husband is gung-ho and so am I!

I had this done for the ICT trail, the blood taking part is not bad. Just bring a book :)