Unmethylated

wheat grass juice

Today, Dr. Mikell (my Emory radiation oncologist) informed me that the results of the MGMT gene methylation analysis of my tumor came in. I intended to provide some explanation of the MGMT gene and methylation but it’s way too complicated to bother. The important thing to know is that the medical community has accepted that the MGMT promoter methylation status in tumor tissues can be used as a predictor of “survival advantage” when using temozolomide (chemo) with radiation, which is exactly our treatment plan.

My results are unmethylated.

Glioblastoma Multiforme (GBM) patients with an unmethylated MGMT gene promoter are generally considered to have a poorer prognosis when undergoing standard treatment.1

Despite this disappointing news, Dr. Mikell stressed that this is just one factor and we should not let it discourage us. We still have the advantage of vigor.

Still it begs the question, if we expect temozolomide to be minimally effective for me, isn’t there something more promising we can do? That’s why I am participating in the clinical trial at Rush but that’s a big gamble as well.

Extra efforts

Eastern medicine

I spoke with a practitioner of traditional Chinese medicine today too. She recommends acupuncture and meditation during my treatment to keep my system balanced and harmonized. I’m going to try to evict all traces of this cancer from my body through sheer intention.

Living foods

wheat grassI intend on using nutrition to stay healthy — eating lots of living foods (e.g., sprouts) and enzymes. I’ll be juicing and fermenting. I sprouted a bunch of winter wheat berries a couple days ago. They are now planted and wheat grass is beginning to grow. In about a week I’ll have about $40 worth of wheat grass that only cost me about 50 cents.

Prayer

I have a lot of friends and family who tell me they pray for me. While I still consider myself agnostic, possibly even atheist, I am very grateful to have people in my corner that are willing to devote the time and energy to my healing. I hope my lack of faith doesn’t discourage any one. I believe positive intention and good vibes are legitimate forces of healing.

Research

There is a sea of information out there to sort through. Turmeric, hemp oil, vitamin K —  doctors won’t acknowledge that these things have any value in fighting cancer but there are some strong testimonials and evidence online that say they do. It’s a daunting task trying to figure all this out.

References

http://www.theibta.org/MethylatedA.pdf

http://www.nejm.org/doi/full/10.1056/NEJMoa043331#t=articleDiscussion

Approved

I’ve officially met the criteria for a clinical trial being conducted at Rush University Medical Center in Chicago. This is good news. It is a Phase II trial which was named as one of the 100 Great Investigational Drugs for 2011 by R&D Directions Magazine.

“We are excited with the early promise ICT-107 has demonstrated in extending both progression-free and overall survival in patients with GBM, with no serious adverse events reported to date,” said Manish Singh, Ph.D. President and CEO.

Tina and I will go to Chicago next week for lab work and apharesis (extracting cells from my blood). Then we can return to Atlanta and start radiation and chemo. In the meantime, a vaccine will be made from my cells and some experimental stuff. That will get injected into me. Actually, there’s a 33% chance that I’ll be injected with placebo. Then they monitor how much time passes before the cancer returns.

It’s still a gamble, but better than betting on nothing.

References

Choices

In past years, if you told me I was as likely as anyone else to develop cancer, I wouldn’t have believed it. Certainly if you told me that I could improve my chances of NOT getting cancer by: cutting back on the amount of alcohol I drank; increasing my physical activity; eating less meat and foods that raised my blood sugar; consuming specific vegetables, fruit, herbs, spices, and teas; and buying organic — I simply would not have cared. I was enjoying the amazing variety of craft beers and small batch bourbons available now. I was devoting lots of time to cooking extravagant, rich foods. And I was having a good time

Although I never gave it much thought, I suspect I felt that I just wasn’t going to get cancer, no matter what I did. I have avoided soft drinks and fast food for the most part for years and gave up smoking years ago because these seemed like healthy enough choices.

And now I have cancer (a pretty darn mean one, too). I’m not saying it’s attributable to drinking, meat-eating, partying, cell phone usage, paint fumes, pesticides on my non-organic vegetables, working at a computer every day, or breathing exhaust fumes riding my motorcycle.

BUT…

I’ve just watched a documentary that was very compelling to me. It is called Anti Cancer with Dr. David Servan-Schreiber. It’s filmed more like an infomercial, but don’t let that put you off. I am recommending that my friends and family, everyone really, watch it. We found it at the library.

While there is a lot of information that is immediately relevant to cancer patients such as the impact of nutrition, activity and social support on recovery, it shows how cancer rates have increased since the 1940s and provides reasons why. The studies presented in the film are very interesting. We’re all susceptible to cancer and these days even more so. But there are behaviors that everyone can change to proactively improve the odds of avoiding cancer.

I get the impression that western medical doctors aren’t really onboard with giving much credence to food having a profound affect on cancer. They are focused more on drugs and procedures. Corporations and the government don’t seem to put much stock in it either.

All I know is that it sucks to think that you could have a lot shorter time to live than you once thought. Right now, I feel great. I’m having a hard time believing that anything is really wrong with me because I feel so good. In fact, I’m ready for a nice 18-year single malt and a long ride on my Electra Glide (maybe not in that order). But they tell me that this cancer is so malignant that it’s coming back to kill me — soonish — so we will be starting radiation and chemo soon. I expect the effects of that treatment to make it sink in that I’m not 100%. And since I look forward to many, many, many years of good times ahead of me, I’m really embracing everything I can do regarding nutrition, exercise, attitude, friends, peer support, acupuncture, yoga, meditation and anything else that can help me beat cancer.

I think watching this film is the first time I got kind of emotional during this whole ordeal because it occurred to me that lots of the people who are showing me love right now are people that I love in return. I hate to think that cancer can (and likely will) affect someone else I love. Cancer killed my father. It has affected several other people close to me. But it wasn’t until it WAS me that it really hit home. So I guess I’m suggesting to my friends (in fact, everyone), consider that maybe some life changes are worth considering. Why not postpone dealing with your own mortality till you’re… old.

Preparations

Radiology mask

Here I am getting fitted with a radiology mask. It will hold my head securely in place and ensure that radiation beams are delivered precisely. I was also instructed on taking the oral chemo treatment, Temodar.

Decisions, decisions

We are moving forward with the Standard of Care treatment (radiation and chemo). Emory currently has one Phase II clinical trial available to me — RTOG 0837. It uses a drug called Cediranib which has a pretty nasty list of possible side effects. We are not willing to travel that path right now.

Tina, in her tireless efforts, found another Phase II clinical trial being offered by Rush University in Chicago called ICT-107. This study has some encouraging write-ups and basically no side effects. Rather than testing an experimental drug, it is testing immunotherapy — creating a vaccine from my own white blood cells. I had blood work taken today to see if I qualify for the study.

Restrictions

1997 Electra Glide

No riding/driving until I’m seizure-free for six months. My seizure occurred on August 11, 2011 so that puts me at February 11, 2012. That’s just in time for cold, bad riding weather here in Atlanta.

Other restrictions I’m faced with include:

  • Alcohol — I guess this makes sense. Hopefully it won’t be forever.
  • Meat — I’m not convinced on this one entirely but I am making a change to eating more living and raw foods.
  • Sugar/chocolate — I haven’t heard it conclusively, but “sugar feeds cancer” is a saying that we must have heard along the way so I’m being good about cutting out sweets (in excess).
  • Caffeine — I miss coffee and British tea, but have been enjoying a diverse selection of teas and maté.

Not so bad a list. We meet with doctors today to discuss the treatment plan.