How to get into the Duke Polio Virus immunotherapy trial for GBM

Hey Friends,

I received an email this morning from Life Extension (the supplement company) with details about Duke's re-engenineered polio virus immunotherapy that is having amazing results. There are whispers of cures, and miracles. It's not something that's applicable for me in my stage of cancer, but I'm here to help you get the information to see if perhaps it can help you survive. There is even a phone number for a direct call to be evaluated for inclusion in the trial. I hope this works for people. Good luck! Fight on my friends. Look outside the box, ask questions, know your needs, and keep your eyes open. 

Enjoy!

Jess

Duke Polio Trial for Glioblastoma

In 2013, Life Extension® announced a discovery that added precious years to people stricken with a lethal brain cancer called glioblastoma. The drug shown effective was valganciclovir, which is typically prescribed to treat cytomegalovirus. 

In 2015, CBS News 60 Minutes featured a story about research emanating from Duke University Medical Center showing complete responses in terminal glioblastoma patients who were administered a re-engineered polio virus directly into their brain tumor. The re-engineered virus prompted a powerful immune response against the viral-infected cancer cells that in some patients appear to eradicate their glioblastoma. 

The Magnitude of Human Carnage 

Each month, 1,000 Americans die from glioblastoma. Up until now there was no cure. Survival from time of glioblastoma diagnosis averages only 15 months. 

Valganciclovir extended survival to over four years in some studies. Doctors are cautiously optimistic that this re-engineered polio virus may be curative. 

How to Enroll in Duke University Study

If you or someone you know suffers from glioblastoma, here is the patient criteria needed to participate in this Phase I clinical study: 

1. You must have a recurrent glioblastoma (meaning you must already have failed at least one conventional treatment). 

1. You can only have 1 area of tumor. 

1. You must be fully functional, that means totally coherent and be able to walk and do things on your own. 

If you said yes to all 3, call and speak to Brittany at 919-684-5301and press option 1. Brittany will set you up to speak with the nurse who will continue with the medical screening process to see if you qualify to enter the trial. 

Questions Life Extension Asked Duke University

Question: How many glioblastoma patients is Duke accepting? 

Answer: There are no limits at this point. People have to qualify after they provide us with their medical histories and complete all the paperwork. If accepted, they then meet the nurses and doctors for their appointments. 

Question: How long is the wait to begin treatment? 

Answer: Treatment starts after the patient meets all the appointments and completes the screening. Patients start treatment as soon as everything is in order. 

Question: Are younger people given preferential treatment? 

Answer: No. 

Question: How many people are not getting treatment because of the favorable 60 Minutes report? 

Answer: No one is rejected. We have had a lot of calls, but have been able to handle them. The pre-screening questions help to eliminate wasting time so we can continue the screening process and see if people qualify for the study after all the preliminary work is done. That is based on them meeting their appointment times, sending in the paperwork and meeting all the other necessary criteria, etc. 

We Applaud Duke University…
But More Lives May Have Been Saved 

It appears this re-engineered polio virus therapy could have been introduced sooner had it not been for bureaucratic hurdles regarding human clinical research that Congress has to fix. Glioblastoma is considered virtually 100% terminal and no human should be denied access to an experimental therapy that has a credible chance of working. 

View the 60 Minutes segment about this new treatment for glioblastoma.

To inquire about qualifying for this Duke University study, call Brittany at 919-684-5301 and press option 1. If you meet eligibility criteria, Brittany will set you up to speak with the nurse who will continue with the medical screening process to see if you qualify to enter the trial.

Cocktail of Treatments

I am happily full. A change from the past few days. It's hard to avoid eating until 11:00 am and stop eating at 4:30 pm. But, I'm okay, I survived again, and happily, I just crammed an apple and a handful of mixed nuts into my mouth. I'm sipping on my broccoli tea, listening to Pearl Jam (it was on the radio). It is so nice to eat an apple, they're so crispy and delicious! YUM. Ambrosias are my favorite, but I also love a good pink lady or honeycrisp.

I have a few minutes before I need to jog around the lake, the long way, and swing by PCC to pick up my  whole milk and a healthy style Gatorade (the real stuff is full of synthetic sugar and food dyes). Today I take my 20 curcumin pills & 5 piperine, then twenty minutes later I blend special sprouts along with 30 pills of xymogen (broken open into the blender) and a little bit of water. I take that drink with whole milk or heavy cream, then I chase it with an electrolyte drink that helps smooth the tummy.

Last week when I was taking the drink, my parents came by and I had them try it (along with Danny). It was hilarious! It's the most horrid drink I've ever encountered. About an hour from ingesting it causes a crazy laxative effect (GROSS), and my dad and I were passing each other back and forth up the stairs to the bathroom. It's completely gross, but it's effective and that's all that matters. This is the special drink that our friends used to eradicate their brain tumor.

It is imperative that brain cancer fighters get together and share knowledge. We can save lives. People are surviving. There aren't very many because most follow their doctor's advice with standard of care even when it's proven to have little to no effect on survival. There are various treatments that have much more success than standard of care, and the information is out there on tumor blogs. Never give up. Don't be afraid to make your own path. You have to fight for yourself, fight for your life. If you come into opposition, which is very likely, stand your ground. I believe that my radiation oncologist, if he was diagnosed with the same cancer, would start researching everything he could to optimize his chance of survival. He is outspoken, extremely intelligent, and believes he is an expert in his field (which is true). Something tells me that he dives into things head on, and he would quickly become an expert on how to save his own life. But guess what, he doesn't have brain cancer and therefore does not have the energy or time or desire to devote his time. On a related note, here's another quote from my current book:

"The current medical system does not provide the best possible treatment for cancer patients, and especially not for those with brain tumors. In my own case, I would likely be dead if I had followed the advice of my neuro-oncologist. My prognosis was dismal. Rather than simply accept this small chance of success, a patient is better advised to look beyond the standard protocol for additional treatments. Different treatments have different mechanisms of action and the laws of probability imply that the more treatments a patient uses, the greater the chances that at least one of them will succeed." - Ben Williams (Surviving "Terminal" Cancer)

I am just shocked by our cancer care in the United States. Everything is dictated by our government, specifically the FDA who favor pharmaceutical companies and their multi-million dollar trials. It's important for cancer patients to remember that just because there hasn't been a trial proving efficacy, that doesn't mean a treatment is ineffective. Cancer patients are taking their lives into their own hands, choosing to save themselves. If all of us cancer fighters band together and share knowledge, which they are doing, we can save ourselves. Screw these doctors that aren't trying to save our lives. We will just do it ourselves. I will not give up, no matter how many headaches, stomach aches, pain, frustration, exhaustion, or sacrifice. I will not give up, even though sometimes I want to climb under the covers, crying, with a 10 lb bag of peanut M&M's and a pint of Karmel Sutra from Ben & Jerry's.

Life makes me want to cry when I think of everyone dying because they can't stand up to their doctors. I am not saying that the doctors are bad people, they're just ignorant. They don't have the time to research the various options out there for cancer patients, and trust me there are many, many options. I'm continuously reminded that it's important to do a cocktail of treatments that work synergistically. It's just like health. If you just cut calories, you'll lose weight but you will lose muscle mass and you won't alleviate the initial problem of why you gained the weight in the first place. It is widely known that you need to change your diet, your life style, your exercise routine, and your mental state to successfully keep the weight off. There's no easy answer in life, success comes from a whole body approach and I believe that's true with everything.

Here's a photo from yesterday. Although my suet has not attracted any birds, my sweetheart neighbor Beth Ann moved her bird feeder out so that we can both enjoy the feathery cuties. Maybe it's time for me to take Elliot's advice and put something I like underneath my feeder. If only there was a way to hang it above our car, that would be perfect :) I bet I would quickly have a Hitchcock moment.

On another note, today is the anniversary of our vow sharing beneath the Eiffel Tower. (Our actual marriage became legal in July, when our friend Clay signed our certificate as a justice of the peace.) What a miracle of a man. Dan is a main reason why I work so hard, fight with such effort, and yearn to live. He treats me with such kindness, showering me with compliments each day, telling me how much he loves me constantly, loves me when I'm bald and bloody, and is always attracted to me despite obvious ailments (like staples on my head or stitches on my breast). He is my perfect man, and I am so grateful that I get to spend my life with him! I don't know how I am so lucky, but I will not take it for granted. He is my version of perfect. I'm so glad that I didn't settle for anything less than Danny. Now, I just need to find a way to enjoy his company for years and years and years. Danny literally knocks my socks of in every way. What a gift!