Boing Boing 

Cancer stem cells tracked

In the journal Nature, interesting stem cell news that could lead to more effectively-targeted chemotherapy for cancer patients. Part of why chemo is so brutal is that it targets all fast-growing cells within the body—the ones that want to kill you, and ones that keep you alive, all are attacked. I've been through it, and it's pretty awful. Snip:

Cancer researchers can sequence tumour cells’ genomes, scan them for strange gene activity, profile their contents for telltale proteins and study their growth in laboratory dishes. What they have not been able to do is track errant cells doing what is more relevant to patients: forming tumours. Now three groups studying tumours in mice have done exactly that. Their results support the ideas that a small subset of cells drives tumour growth and that curing cancer may require those cells to be eliminated.

It is too soon to know whether these results — obtained for tumours of the brain, the gut and the skin — will apply to other cancers, says Luis Parada at the University of Texas Southwestern Medical Center in Dallas, who led the brain study. But if they do, he says, “there is going to be a paradigm shift in the way that chemotherapy efficacy is evaluated and how therapeutics are developed”. Instead of testing whether a therapy shrinks a tumour, for instance, researchers would assess whether it kills the right sorts of cell.

More: Cancer stem cells tracked : Nature News & Comment.

Photo: (Nature.com/G. DRIESSENS). Researchers can now trace the cell lineage within a growing tumor. In this skin tumor, the red cells all originated from one stem cell.

Cancer and music "that makes me want to live"—Brian Mansfield

USA Today's Nashville music critic Brian Mansfield was diagnosed with colon cancer at age 48. In a beautiful piece at USA Today, he describes a kind of "cancer honeymoon" just after his diagnosis in which he felt hopeful and eager to make changes in his life. That ended abruptly when further information about his disease showed that things would be harder. Read the whole piece, I don't want to spoil the story for you here, but this part really resonated with me:

Cancer has changed the way I hear music, more than any other life event except my marriage. Songs I once appreciated only on a surface level now strike deep at the core of my soul. Some inspire me; some terrify me. Others that I might have liked before, I've got no use for now. I've also got more time to listen, whether it's during my morning exercise time or while lying in a hospital bed.

These songs form part of the soundtrack to my cancer story...

Man. Same here, Brian. Before my mastectomy, someone on Twitter told me that some study showed that patients who were able to bring a CD of music to the operating room, to be played during their surgery, had better recovery outcomes. I made just such a CD and brought it to the hospital. Didn't end up playing it, and I recovered well, but I share this anecdote because there have also been certain songs that I play to and from important medical appointments, certain songs I've cried to or just listened over and over to, to jolt me out of the awful darkness that comes with cancer. And I'm going to play that "surgery" CD when I drive to radiation treatment this morning.

Anyway, Brian's Spotify playlist is here.

And read the rest of this story: My Semicolon Life: Cancer honeymoon's over. (USATODAY.com)

The track at the top of his list is embedded above: "Dance in the Graveyard," by Delta Rae. Download it here, and the lyrics are here, and pasted below:

Read the rest

Poop Strong: Cancer patient whose costs exceeded insurance cap wins victory, via Twitter

Arijit, 31, is graduate student in Arizona who was diagnosed about a year and a half ago with stage IV colon cancer. He endured multiple surgeries, and grueling rounds of chemotherapy. Then, in February, 2012, the cost of his treatment exceeded the lifetime limit on his graduate student health plan, which is managed by Aetna.

His coverage was terminated. His cancer was not.

He launched what we cancer patients sometimes refer to as an internet lemonade stand: a site called Poop Strong (a light-hearted parody of "Livestrong"). At poopstrong.org, he invited well-wishers to make a donation or buy schwag, with all proceeds going to his healthcare.

But, big news today, as his pal Kirk Caron tells Boing Boing,

In the six months between when he was dropped and when he'll be picked up by another student health plan, he's been looking at well over $100K in medical bills for his treatments. In addition to updates about his own condition and the state of Poop Strong, Arijit's been tweeting (naturally) about the state of health insurance, and recently, Aetna got involved. The conversation (as Twitter convos tend to do) sort of spirals out from the main thread between Arijit and Aetna.

That's an understatement! Arijit ended up debating directly with the CEO of Aetna, Mark T. Bertolini. The tl;dr: Aetna, and Mr. Bertolini, agreed in the end to cover the full extent of bills that accrued since Arijit was dropped from insurance (about $118,000).

"The system is broken," said Bertolini. "I really am trying to fix it."

Arijit is redirecting all of the donations he received the University of Arizona Cancer Center Patient Assistance Fund and The Wellness Community (Arizona), to directly assist other people with cancer who cannot pay for the life-saving medical treatments they need.

I spoke with Arijit today, and will be publishing a transcript/audio of our conversation soon. He's a really cool guy, and he has some insights from this experience that I think everyone should hear. It looks like Arijit is covered, for now, but the system is still broken. The debate over health care costs has become a political football—but for people like me and Arijit and everyone else in America who isn't in the 1%, health care costs are literally a matter of life and death. No one should suffer or die because they can't afford medical treatment. It really is that simple.

Arijit's friend Jen Wang created a Storify of the twitter exchange between Arijit, Aetna's PR reps, and Aetna's CEO. You can read this below.

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A rant on marijuana dispensaries, and the quest for a living wage in LA

Over at Dangerous Minds, Richard Metzger has an epic rant in response to a recent Los Angeles City Council vote to close medical cannabis dispensaries in the city (there are many). I use pot to help with the side effects of cancer treatment. I didn't use pot before I was diagnosed with cancer. The City Council's suggestion that "seriously ill" people like me should just "grow their own" is very let-them-eat-cake-y. Cancer patients weak and nauseous from chemo can barely make a ham sandwich, let alone cultivate medicinal herb in the quantity and quality required to be useful. They might as well ask us to synthesize our own chemotherapy drugs. Metzger isn't a cancer patient, but he has great arguments here. Snip:

I live in an area of the city near the so dubbed “Green Mile,” a stretch known for its numerous, highly visible cannabis dispensaries. Within walking distance, there are approximately twelve dispensaries. Take a slightly longer walk and that number rises at least threefold.

By contrast, there are but two Starbucks, one McDonald’s, One Burger King, one KFC, one Jack in a Box, two Subways, two 7-Eleven stores and no Carl Jrs. It goes without saying that these are minimum wage jobs, whereas the average wage at a pot dispensary is $20 per hour.

In five years of living in this part of Los Angeles, I’ve seen every single one of these places pop up and what changes the neighborhood has gone through in that same period of time. Not only that, I have PERSONALLY visited almost all of them.

Here’s what I’ve noticed:

Since the recession, there have been very, very few new retail businesses that have opened along the “Green Mile” other than pot dispensaries. A few things, but not many. In every case, they are inhabiting real estate that was not being used, and that had not been used in some time. A lot of these previously empty buildings got much needed paint jobs, let’s just say, and many long empty buildings were rehabilitated by the dispensary owners.

I have seen no appreciable rise or fall in the neighborhood crime rate and I am sure the local police would probably agree. There is no discernible difference. No change. None.

More: Dangerous Minds | The Green Mile: A perspective from deep in LA’s busiest pot district on the weed ban vote

Woody Roseland, on life with cancer: "You Are Here" (video)

[Video Link] You may remember a previous Boing Boing post about Woody Roseland—specifically, about his spectacular "Shit Cancer Patients Say" video.

Man. I loved that video, and I love Woody. I've followed him on Twitter throughout my own cancer treatment. He inspires me and makes me laugh.

Here's a video of Woody speaking at TEDxMileHigh about his life with cancer.

So much of what he says rings true for me, too:

"When cancer stares you in the face, you learn who you are."

Breast cancer conversations on Twitter, visualized in real time

Here's a cool data viz project from GE that displays real-time conversational spreads about breast cancer on Twitter. (thanks, Laura Hollister)

"Queen of Clown Porn" Hollie Stevens, 30, dies of breast cancer

Image: Hollie Stevens, via Flickr.

The alt-adult performer known as Hollie Stevens (Twitter, Tumblr, Flickr, Wikipedia, MySpace) has died of breast cancer.

In addition to her work in indie pornography (including "clown porn", NSFW link), she was also a model for, and contributor to, the weirdo horror-rotica zine Girls and Corpses.

From an early account of Hollie's story by Vanessa Pinto at SF Weekly, it sounds like the lack of access to affordable health care (and health insurance) was a significant factor in the case of Hollie, a freelance creative based in San Francisco:

She was no different than a lot of us when we were young who believe we're invincible. So when this very young healthy woman noticed a lump on her breast, she let it go at first.

"I noticed it and paid attention to it, but going to the doctor is hard when you don't have insurance," says Stevens.

The lump didn't go away.

More from Vanessa Pinto, this time writing Hollie's obituary one year later:

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NYT series on genetically-targeted cancer treatments

When you have been diagnosed with cancer, as I have, you quickly grow accustomed to "friendly cancer spam." Friends, relatives, and well-meaning acquaintances routinely forward you a gazillion identical links to whatever this week's hot cancer news headline may be.

So it was for me with this New York Times story on Lukas Wartman, a leukemia doctor and researcher at Washington University who developed leukemia. As he faced death last Fall, his cancer genome was sequenced by his colleagues.

What was revealed then led to a treatment plan that targeted the specifics of his genetic makeup. And so far, according to Gina Kolata's report, that experimental treatment plan has been an amazing success. Snip:

Dr. Ley’s team tried a type of analysis that they had never done before. They fully sequenced the genes of both his cancer cells and healthy cells for comparison, and at the same time analyzed his RNA, a close chemical cousin to DNA, for clues to what his genes were doing.

The researchers on the project put other work aside for weeks, running one of the university’s 26 sequencing machines and supercomputer around the clock. And they found a culprit — a normal gene that was in overdrive, churning out huge amounts of a protein that appeared to be spurring the cancer’s growth.

Even better, there was a promising new drug that might shut down the malfunctioning gene — a drug that had been tested and approved only for advanced kidney cancer. Dr. Wartman became the first person ever to take it for leukemia.

And now, against all odds, his cancer is in remission and has been since last fall. While no one can say that Dr. Wartman is cured, after facing certain death last fall, he is alive and doing well.

Suffice it to say that this stuff is relevant to my interests. It is routine for breast cancer patients like me to receive genetic screening for the BRCA mutation, and sometimes a few additional known genetic factors. But there is so much that we do not know, and a growing sense that this infinite array of genetic unknowns could lead to more saved lives, and better quality of life for those of us who have been diagnosed with the disease.

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iPhone app makes a game of monitoring pain for young cancer patients

[Video Link] Canada's Hospital for Sick Children (aka SickKids) and the Cundari creative agency are developing a iPhone app called "Pain Squad" to help monitor and report physical pain and emotional wellness in young cancer patients. Snip from a post on Springwise:

Using the narrative of a police force hunting down pain, users are inducted as a rookie officer working on the case. Patients fill out a daily survey – which asks questions relating to whether they felt pain that day, how intense it was and its location – and can progress through the ranks of the force when they keep their records updated. The concept was created by Toronto-based media agency Cundari, who got stars from Rookie Blue and Flashpoint – two primetime cop shows in Canada – to appear in videos that are unlocked when patients do well and progress the narrative. By gamifying the process, the app gives patients an incentive to keep a daily journal of their pain. The app is still in the testing phase but SickKids hopes to release it later this year.

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The Bald Princess (a 4-year-old's drawing of Xeni, for women with cancer in chemo)

I've been blogging and tweeting about my experience in treatment for breast cancer, including what it's like to go through chemotherapy. The chemo drugs I received made all my hair fall out (not all kinds do, but mine did). I've been going around "commando," as people with cancer say—bald, no wigs. Scarves or hats only when it's too cold or sunny to go bare.

You do whatever works for you to get through this. Going around bare-headed is what works for me.

Julie Zwillich just tweeted me this fantastic drawing made for me by her four-year-old daughter. It's me. She calls it "The Bald Princess."

If you know a woman or girl receiving chemotherapy, maybe you'd like to share this with them, too. Good days always follow the bad.

State Dept. snubs blog of Foreign Service spouse in breast cancer treatment for using n-word: "nipple."

My pal Anthony Citrano points to this outrageous story, and says: "The State Department says their staff should blog about 'individual stories', but this bullshit about your new nipple is just too much."

The tl;dr: Jennifer Dinoia, who is married to a foreign service agent, maintained a family blog that was promoted on the State Department website. She wote about her experience in treatment for breast cancer. All was fine with the blog, and its inclusion in the State Dept.'s official blogroll, until she wrote a post detailing nipple construction after mastectomy.

From Ms. DiNoia's blog post, after she realized her story was no longer welcome:

Read the rest

On Twitter, shared stories of moms, cancer, and loss

Yesterday was Mother's Day in the US. I spent the day at home in Los Angeles, still recuperating from chemo, gearing up for the next phase of my cancer treatment. After I called my mom on the East Coast to wish her a happy Mother's Day and thank her for all she has done, I shared a few thoughts on Twitter about moms and cancer. I invited my followers to do the same.

One by one, 140-character-length tributes came in about moms who survived cancer, moms who helped their kids through cancer, and kids who lost their moms to cancer. I retweeted a few, then a few more, but—they did not stop. A flood of personal testimonies to the power of motherhood in relation to cancer followed. I read every single one, and tried to share every single one with my followers.

Josh Stearns kindly collected many of them into a Storify: Mother's Day Memories of Love, Loss and Living With Cancer. It's embedded below.

Above, a photograph of me and my mom, the day before one of my chemo infusions. I draw a lot of strength from my mom. And you need all the strength you can get to get through this thing.

She adds a tribute of her own today:

My Mom died of melanoma (skin cancer) at 54. Her doctor never knew it was cancer until the autopsy. All of us (3 girls, 3 boys) still carry her spirit in our hearts.

Read the rest

Henna "crowns" for chemotherapy patients

Samaritan Magazine has a fun article here about Henna Heals, a charity based in Toronto, Canada that offers a free service to cancer patients undergoing chemotherapy: beautiful henna designs applied to their chemo-bald heads. The organization was created by photographer Frances Darwin, who also captures the resulting designs in photos. Snip:

The swirling, intricate drawings, which are safe, temporary and applied by skilled artists, command the eye to the head of the henna wearer, inspiring awe rather than pity while offering an alternative to wigs or hats. Perhaps more importantly, these henna "crowns" offer women suffering hair loss -- and the accompanying lost sense of femininity that brings -- a chance to feel uniquely lovely while inviting gentle dialog about a tricky subject.

When I began chemo as treatment for breast cancer, a number of friends suggested henna designs to me, too. I haven't done it yet, but I'm still chemo-bald... so it's not too late! Might be worth a trip up to Toronto to visit these guys. A beautiful project, and really pretty designs.

Cancer Patients Transformed By Gorgeous Henna Dome Designs | Samaritan Mag.

(Photo: Frances Darwin; model: Tara Schubert; henna: Darcy Vasudev. Link via Chris Woodfield)

"What Cancer Has Taught Me About Writing And Living"

Two weeks after historical fiction writer Anne Clinard Barnhill's debut novel was released, she was diagnosed with stage 3 endometrial cancer. She writes about how the diagnosis changed her, and about what the experience has taught her about writing and living:

Since then, I've done a six-week book tour across North Carolina, had a radical hysterectomy, gone on a blog tour and started chemo. Not exactly what I'd expected in what was supposed to be 'my' year.

At first, I didn't want to tell anyone about the disease, but that quickly became unfeasible; people were contacting me to do readings and I had to explain why I couldn't; my editor had been patiently awaiting my revisions to the second novel and I didn't want him to think I was dawdling; and, I figured it was something my agent should know. So, I went public. As I deal with the gritty life of coping with cancer, I've noticed some similarities between the writing life and living with cancer.

Read the rest here: BOOK PREGNANT: What Cancer Has Taught Me About Writing And Living.

(thanks, Lydia Netzer)

To do in California May 19-22: fight for medical marijuana

Now that you know my thoughts on medical cannabis for cancer patients, you'll understand why I think this is a noble cause. Patients gathering in Sacramento, May 19-22. On Monday May 21, public demonstration at the state capitol.

An inspirational needlepoint for those with cancer

A wonderful thing, made by Heather Beschizza (web, Twitter, happens to be married to this guy). I've been keeping this on my desk for some time, but wanted to share it with the rest of the world, too.

“My breast has fallen off. Can you reattach it?”

Atlanta Magazine has an interview with Otis Webb Brawley, M.D., and an excerpt from his new book "How We Do Harm: A Doctor Breaks Ranks About Being Sick in America."

The excerpt tells the story of 53-year-old Edna Riggs, of Atlanta, Georgia. Fear of cancer, medical debt, and losing her job caused her to not seek treatment for her breast cancer until it reached a very advanced state.

(Graphic content, may be upsetting; via @rogersmatthew)