Category Archives: #thriver

What To Do About Pinktober

This morning, I’m flying to Houston for the 4th annual Metastatic Breast Cancer Conference.  It’s a medical conference but also has a program for advocates like me.

My goal is to share key takeaways, musings and questions from each session that I attend via social media. I’ve never been to a medical conference of this type, so this goal could morph into: write down and google ALL THE WORDS!

Who knows how jargon-heavy these doctor types are at conferences.  Whatever the case, I’ll share the experience in a later blog post.   

But before I dash, I wanted to spotlight social media activism aimed at #pinkwashing

This October is Breast Cancer Awareness Month, and many companies use pink ribbons or sexy images to increase their profits. There’s lots of problems with #PINKtober – men with breast cancer and metastatic breast cancer #lifers feeling ignored, just for starters.

I urge everyone to #ThinkBeforeYouPink

METAvivor was eloquent in their October 1st facebook post addressing PINKtober:

And here’s my contribution (so far) to the #WhyIsThisPink movement:

I’ll try to stay away from facebook arguments of this sort for the rest of October.  Probably a bad use of my time, but I couldn’t not call Bar Louie out on it when I saw their “party for the cure” tagline.

For better ways to avoid #PINKtober while supporting those affected by breast cancer, follow @metavivor on the social media platform of your choice or visit their website.

How to Deal?

How to deal? Maybe this dramedy from the aughts has the answer?

Or maybe not, given its Tomatometer of

While certainly not a metastatic cancer-specific question – I’m sure it has been pondered daily by most humans since we came into existence – I’ve found that “how do you deal?” comes up somewhat more often when you’re dealing with terminal (as it currently stands) illness on top of regular life.

So when a fellow metster tweeted:

I wanted to respond with something encouraging. I could say that my support group #lifer sisters help me cope. I’m #blessed to live in Austin where the Breast Cancer Resource Center provides a strong network of support services. Plus I’ve got facebook groups and all the other online #breastcancer communities to turn to. And as long as I’m counting my blessings, my family and fiance are paramount.

But that’s not the answer for me, not the whole answer. All the support systems in the world aren’t enough when I wake up at 4am with side effect and/or symptom du jour wondering how much worse it could get.

Anyway,  what do I know? I’m a newbie at coping with all this cancer stuff.  And I think I’m doing it wrong.

Rather than getting in touch with my emotions, I avoid feeling all the feels by getting lost the many distractions our modern age affords us. 

Why dwell on the thorniness of this mortal coil when I can beam up into brave new worlds?

Except it doesn’t feel so brave after a while.

Am I not Superhero Nutritionist? Do I not have a duty to use all the arsenal at my disposal to keep my body in tip-top fighting shape?

 

Liberal dashes of distraction,  great dollops of

There, that’s my recipe for coping.

I re-affirm my resolve to defy the cancer villain every morning that I tape up my

Xeloda-blistered feet.

I defy the bone pain, anxiety and fatigue the cancer villain throws at me with every single step. With every

 

 

 

 

 

 

 

If I need more moleskin or band aids or balm for my feet, I’ll put em on and keep dancing.

If I need a cane I’ll dance with the cane, if I need a walker I’ll dance with the walker, if I need a wheelchair I’ll have my dance party with wheels.

Thank you to @madmetster for inspiring my much-needed reflection. I’ll keep following the conversation notdeadyet started to see how others like me cope.

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Fantastic Delays and Where to Find Them

When my fiance asked whether I’d posted anything on my blog lately, I knew it was time for an update. Way past time.

I keep finding excuses to not write – many are good ones: travel, fatigue, hospital stays, doctor’s appointments, advocacy work, absorbing books, Facebook (maybe that’s not one of the better excuses)… The more time passes, the more daunting the task seems to become. The excuses morph together into a mucky excuse swamp that pulls me down. But, as the Superhero Nutritionist, I choose to crawl out of the excuse swamp to write a new post!

Many of the activities that I’ve been the most proud to engage in over the last few months are directly inspired by LBBC. If you recall my last post, that’s the organization for which I became a Young Advocate after attending their conference and training in Philadelphia in late September.

My LBBC experience empowered me to find out which legislators represented me at the state and federal levels and to set up appointments to speak with members of their staff.

I couldn’t go to Washington DC for the Die-In & Stage IV Stampede on October 13th (Metastatic Breast Cancer Awareness Day).

Melanie Childres, Melissa McAllister & Susan Rahn – Dying for a Cure – Photo By Kipp Burgoyne

Instead, I contacted METAvivor. This nonprofit sent me materials used by the Stage IV Stampede participants to urge Senators and House Representatives to support the metastatic breast cancer community through additional research and improved access to treatments. I used the materials from METAvivor when I spoke with staffers from the offices of Senators Cruz and Cornyn, Congressman Smith and Representative Naishtat.

I’m not sure what effect my advocacy had, if any. Still, all four of the staff that I spoke with seemed to listen attentively to my story and my “asks.” Each conversation left me feeling hopeful. Maybe I impacted at least a few people within the whole political system.

The Texas Legislature will meet in regular session this January, so I’ll be back to scheduling meetings  in 2017.

LBBC also connected me with an amazing opportunity – I got to fly into Atlanta to serve on an advisory board for Lilly Oncology titled “Creating Communications that Share the Metastatic Breast Cancer Story.”

The idea of marketing and metastatic breast cancer mixing felt icky at first. But successful marketing campaigns lead to more money for the pharmaceutical company which in turn, one hopes, leads to more research and development of new treatments.

Philosophical musings aside, I had a great time getting to know the other #thriver ladies participating in the advisory board. The whole experience felt like a cross between playtime and a support group, but paid more per hour than any job I’ve had before. Wouldn’t mind having a gig like that again.

I’m loving the work I’m doing now, too, and again I owe it to LBBC. As an LBBC Young Advocate, I was nominated to become a consumer reviewer for the Breast Cancer Research Program (BCRP) of the Department of Defense (DOD). I interviewed and was accepted!

I’ll avoid writing too much about the program and my role in it lest I inadvertently violate some DOD confidentiality rule. Suffice it to say, I’ve been spending lots of time browsing pubmed.gov over the past few weeks, fascinated by all the cancer research possibilities and feeling more optimistic than I have in nearly a year since my diagnosis.

That puts me in the mood to make turmeric eggs with parsley, cumin seed, garlic and goat cheese.

In my next post, I’ll write about what I learned at the LBBC conference about hormone therapy and exercise. One of my New Year’s resolutions is to write a post every two weeks or so rather than getting distracted and dragging things out for months! You can help me keep my resolution by sending me requests or questions that you’d like me to address on the blog.

And, as always, please share!

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

How You Can Help Save 8 Million+ Lives per Year

I’m now officially a Living Beyond Breast Cancer (LBBC) Young Advocate!

LBBC Young Advocates Class of 2016

Shortly after getting back from Philly, I sat down to write a post about my experiences at the LBBC conference and plans going forward. But I began to feel that I was merely procrastinating – before anything else, I needed write the long-promised conclusion to my series on methionine.

Why do I keep stalling?

frustration

I’ve learned so much while reading about methionine research, but I don’t know how to act on that information except to report it.

Even after my advocacy training, I’m not sure what I can do besides lobbying for increased research funding. That’s important, but the whole legislative process is so so

Image by jesseakc

slow

 

 

 

 

In my last post on methionine, I found out about methioninase, an enzyme that causes methionine to degrade rapidly. Getting methioninase injections or taking methioninase pills would be far easier than trying to follow a methionine restricted diet.

For now, though, these pills & injections are the stuff of fantasy.methioninease-fairy-for-blog

I’d written to Charlene Cooper, COO of AntiCancer, Inc., the company that holds a patent for METase (a type of methioninase). I wanted to know when to expect human trials for this promising treatment.

Here’s Charlene’s reply:

Dear Marina,

Thank you for your email below.  We are very sorry about your diagnosis of metastatic breast cancer.

AntiCancer has developed recombinant methioninase through numerous pre-clinical studies, including primates and pilot clinical trials.  AntiCancer has had extensive discussions with the FDA and is ready to go forward with final toxicity studies and Phase I clinical trials.  The only hurdle is funding.

It is possible the “moonshot” initiative may be useful, but probabilities of funding from them are small.  I am attaching for you a paper (Development of recombinant methioninase to target the general cancer-specific metabolic defect of methionine dependence: a 40-year odyssey.  Expert Opin. Biol. Ther. 15, 21-31, 2015) from our President, Dr. Robert Hoffman, and another two other very important new papers on the use of methioninase in combination therapy.

We manufacture recombinant methioninase on site at AntiCancer Inc.  It is highly pure, but out facility does not have a good manufacturing practice (GMP) license as yet.

We would like to help you and also would appreciate your views for funding methioninase, one of the most promising developing cancer therapeutics.

Best regards,
Charlene

Charlene M. Cooper
Vice President & COO
Grants and Contracts Administrator
Executive Assistant to Dr. Robert M. Hoffman
AntiCancer Inc.

I appreciated the articles, and the time Charlene took to reply to me. But (sigh) how can funding still be a hurdle when we have the Cancer Moonshot Initiative and Mark Zuckerberg & Priscilla Chan pledging 3 billion to end/manage all disease? I have no views or particularly good ideas for funding methioninase trials. dunno-bitmojiThere’s MetAvivor.org,  but 40k per year is the max for their grants – I suspect that’s pocket change to businesses like AntiCancer Inc. Even if their human trials could get fully funded, it would probably take years and years to see results, not to mention FDA approval.

Before frustration could take over, I researched another company in the enzymes for oncology therapies business: Aeglea BioTherapeutics.

Founded less than three years ago, Aeglea develops engineered human enzymes invented in a lab a few miles away from me, at The University of Texas at Austin. One of the enzymes it’s working on is cystathionine-γ-lyase. It can degrade methionine like AntiCancer, Inc.’s methionine-γ-lyase enzyme, but the patent for cystathionine-γ-lyase claims that it would require less frequent injections for the same effect. More importantly, as a re-engineered version of an enzyme already found in humans, cystathionine-γ-lyase should not elicit an immune system response.

The lead author of the 2012 article on the development of cystathionine-γ-lyase, Everett Stone, still works at UT Austin, so I reached out to him. Professor Stone kindly agreed to meet with me to speak about the status of human methioninase research. It was Professor Stone who pointed me toward Aeglea – the cystathionine-γ-lyase ball is now in their court.ball-in-court-for-blog-rotated

Aeglea does list cystathionine-γ-lyase (product candidate AEB2109) on their product pipeline page, but it’s only one of seven and not even at the phase of Pre-Investigational New Drug (Pre-IND) Application with the FDA. This application is required before any Phase 1 human trials can take place.

Again, I have no good ideas about what I can do to speed this process along. Any suggestions, dear readers?

This whole investigation into methionine & methioninase has left me feeling like:

sharksurfingIt’s been ever so much fun, dodging this toothy shark – wonderful exercise, really! But once this boat towing me along runs out of gas, it would be great to have another one on standby to take me back to the beach.

Wooohooo, I see some boats in the distance, close enough to wave at. Hey boats, can one of you come give me a lift? Boats? Why are you crawling along so slowly? This is an especially toothy shark that I’m dealing with here, hellooooo…

Still, I refuse to give up hope for a cure, or at least more & better treatment options. Here then is my message in a bottle:

sea-bottle
Image by Comfreak

We all need to raise our voices to demand that  research on metastatic cancer be prioritized and well-funded. One easy way to do this is follow and support MET UP, whose legislative advocacy goals include:

  • Additional research funding for all cancer types. The National Institute of Health (NIH) currently funds ~ 8% of the grant applications it receives. That number needs to increase to 25% at the very least.
  • Allocating 30% or more of federal breast cancer research dollars to metastatic research – an appropriate goal considering that ~ 30% of those who survive earlier stages of breast cancer go on to develop metastatic disease.

Together, we could help build a boat big and fast enough, as it were, to save over half a million Americans who die from toothy shark – er, cancer each year.

On a global scale, cancer cures/effective treatments would prevent the death of > 8 million people per year! Since nearly 40% of people in the US will be diagnosed with cancer at some point in their lifetime, you might be helping yourself or your family just as much as you’d be helping me.

Quick Travel Update

Before flying out of town, I wanted to give a quick update and explain why the post I’d promised to write about methioninase is delayed.

The primary reason is a happy one: my fiance and I were able to get away to New Orleans for a few days. We enjoyed delicious seafood at all of the restaurants we visited, took in some funky artwork and music in the French Quarter, and had a swamp tour.

nola-transparent

Alligators jumping out of the water (lured by marshmallows on a stick) freaked me out a bit, and I passed on holding the baby alligator that our tour guide brought with him on the boat. Quite thrilling, but I do prefer less toothy animals.

And it turns out that New Orleans is home to the largest trampoline park in the world,

floral-jumping-girl-silhouette
Image by GDJ

so I declared that we must jump there. My fiance was skeptical at first, but once we got on the trampolines, our inner 10-year-olds were ecstatic.

All in all, an amazing mini-vacation! I felt incredibly lucky to be able to do all the normal touristy things; just a few months ago, I was using a walker to get around and rolling a canister of oxygen behind me. I’ve gotta give modern medicine credit for that turnaround. While I like to think that the turmeric supplements are playing a role in my (knock-on-wood) improving health, I suspect that without chemo and radiation, I’d be coughing away in a wheelchair right now – assuming that I’d even still be alive.

This week I’m traveling again, this time solo to Philadelphia to participate in Living Beyond Breast Cancer’s Young Advocate Program.

ready-for-takeoff-emoji

I’m super excited to participate in the workshop and conference. I intend to blog about what I learn in Philly once I get back to Austin. Further methionine adventures are in the post pipeline too, so stay tuned!

Save

Save

Save

Save