susantorresfund.org

There is a website up now for Susan Torres with the latest news and updates on the family and her condition as well as a PayPal link to donate money. If you want to find out more about her tragic story I can't think of a better place to start.

If I had found the site earlier I would have learned that Jason and Justin Torres were on Larry King Live tonight. I think they repeat it a couple times a day so you can most likely catch it later tonight if you missed the initial airing.

Update: you can read a transcript of the interview here.

Melanoma vs. Prostate Cancer

New research suggests that sunlight can help prevent prostate cancer but that the benefits of sun exposure (Vitamin D) are outweighed by the risks of skin cancer. Or at least that is what the headline ("Sunlight threat cancels benefits") in Newsday suggests. The article itself doesn't go into much detail about that though other than saying researchers are not suggesting men expose themselves more to the sun than they already are and that the safest way to get Vitamin D is to take it orally.

What I liked best about the article though were the suggested reasons for why men are more at risk of getting melanoma than women (e.g. we don't protect ourselves, we don't go to the doctor, we spend more time outdoors, etc.).

Excerpts from Newsday:

The prostate-cancer researchers also stressed that sunlight is not the only source of vitamin D and that they are not encouraging men to increase sun exposure.


"While clearly melanoma is a concern for everyone, it is at a crisis level for men," said foundation president, Dr. Perry Robins, and particularly for men in middle age and beyond. Between 1969 and 1999, melanoma death rates rose 66 percent in men ages 45 to 64, compared to 19 percent among women of the same age group.

Men are falling short in all three key steps for preventing melanoma, according to Alan Geller, an associate professor of dermatology at Boston University and co-chair of the National Council on Skin Cancer Prevention.

He noted that one recent study found that men over 40 spend the most time outdoors of any age group, even children. Another recent national survey of 1,000 Americans found that only 12 percent of men always apply sunscreen when they head outside and often don't take other sun-safety steps.

At the same time, men tend not to have a regular primary-care doctor and are two to three times less likely than women to have regular screenings for cancer, or even do self-exams of their skin and have someone else check their back.

Susan Torres' Melanoma

There is a new story in the Washington Post about the Torres family and their fight to keep Susan Torres alive long enough to give birth in a couple weeks from now. This is probably the most in depth article yet and it goes into detail about how melanoma has played a tragic part in this. I have some excerpts below but please go read the entire story for yourself.

Excerpts:

Then there is the cancer: melanoma, which is particularly insidious in that it is one of the most aggressive forms and one of the few that can penetrate the placenta.

Susan Torres' melanoma had been diagnosed when she was 17, when she had a malformed freckle on her arm, but after it was removed, doctors thought she had no reason to worry.

Apparently, however, the cancer cells remained dormant in her body all these years, and, for reasons scientists spend their entire lives trying to figure out, they became active, eventually, with only the faintest of symptoms, headaches and nausea, forming a tumor at the back of her neck. Now the melanoma has metastasized, the cancerous cells traveling through Susan Torres' bloodstream, searching for a place to grow. So far, they have found the lymph nodes under her arms and, last week, her lungs.

Chris Griffin

You probably haven't heard of jazz trumpeter Chris Griffin but you no doubt have heard of a few of the musicians he's worked with: Benny Goodman, Ella Fitzgerald, Billie Holiday, Tony Bennett, Lionel Hampton, Glenn Miller, Gene Krupa, Rudy Vallee, Mel Torme and Charlie Parker.

Chris Griffin, one of the best trumpeters of the Big Band era, died on June 18 from melanoma.

Excerpts from South Carolina's The State newspaper:

“He had a swinging sound with just a touch of sweetness,” William Sam Meier, an expert on classic jazz, told the Los Angeles Times.

Gordon Claude “Chris” Griffin was born in Binghamton, N.Y., on Oct. 31, 1915. He was 12 when he picked up the horn. Six years later he was living in New York City and playing professionally in saxophonist Charlie Barnet’s band.

6/29/05 update - Associated Press obituary for Chris Griffin.

Team Melanoma

I discovered a great way for people to help fight cancer thanks to Amber Wadey of Southern California. The American Cancer Society holds a team event it calls "Relay for Life" around the country (and soon the world) where each team tries to keep at least one member on the track for as long as 24 hours in order to raise money and raise cancer awareness. There are about 14 of these events in my area this summer, so if you're interested in participating, there is likely to be at least one in yours. You can look them up here. You can help out by donating your money or your time. And there's still time to help out Amber's "Team Melanoma". Their relay is on July 23rd and 24th. Amber's husband, Chuck, was diagnosed with melanoma a couple years ago and after numerous surgeries and chemotheraphy, he has since recovered but still deals with the effects of it every day. Both Amber and Chuck are in "Team Melanoma" along with Chuck's 24-year-old co-worker, John Hall, who was diagnosed with Stage 4 Melanoma shortly after Chuck. He recently had brain surgery and is fighting every day for remission. I encourage you to read John's story and to donate if you are willing.

>>UPDATE 9/24/05: John Hall died on September 17th, 2005

Excerpt from their team page:

2 years ago, at the age of 26, Chuck Wadey was diagnosed with Stage III Malignant Melanoma. He endured multiple surgeries and 3 months of intense bio-chemotherapy. He has since made a "full recovery," but still deals with issues related to his cancer battle every day.

Only a few months later, another young Treyarch employee, John Hall, was diagnosed with Stage IV Malignant Melanoma. His had spread to his liver, lungs, and even his brain. John is still undergoing treatments today, and is hoping for full remission.

Team Melanoma is dedicated to raising awareness so that this does not happen again. Our goal is to raise money which will go directly to research for Malignant Melanoma treatments and the search for a CURE.

Excerpt from John Hall's blog:

A couple of years ago an unusual mole started to form on my left shoulder. I was mildly concerned, but didn't think enough of it to go see a doctor. It continued to grow, eventually stabilizing about a centimeter in diameter, occasionally bleeding slightly. I knew I probably should do something about it, but I didn't think it could possibly be anything bad (who, me, get skin cancer? never!), and feared getting bad news from the doctor, so I never went in.

Bad idea.

Brian C. Pohanka

Brian Pohanka died on June 15 of melanoma at the age of 50. He was an accomplished military historian who worked as a consultant on movies like "Glory" and "Cold Mountain."

Excerpts from the obituary:

Pohanka was keenly interested in the Civil War and the battle of Little Bighorn and served as a consultant for books, television and movies. His own work included photo and written essays on Civil War battlefields and the Little Bighorn battlefield.

Pohanka served on the boards of several preservation organizations, some of which he founded.

In 2004, he was honored by The Civil War Preservation Trust with its Battlefield Preservationist of the Year award.

Other Blogs

I was googling for melanoma blogs recently and came up with this. It's not a cancer blog but the author just happened to mention that May was "melanoma month" so it came up in my search. A few of his readers posted some poignant comments about how melanoma has affected them. I encourage you to check them out here, but I'll excerpt a few below.

Excerpts from comments posted on Laurence Simon's "This Blog is Full of Crap":

I lost my father to Melanoma 11 years ago. It still hurts. Everyone should have themselves checked on a regular basis, and if a mole is removed, make sure the lab tests it correctly. It saves a lot of pain and suffering later.
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I just had a malignant-melanomic mole removed...
...The surgery gash is five inches long, just to yank out a 4mm-wide mole. I hate the pain, the inability to move, and the sleepless nights 'til I give up and hit the Vicodin. I'll never be able to sun myself on my stomach again because of the scar it left behind (not to mention all the other moles)...
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I ignored all of those rules during my teens and early 20's. Six years ago I was very lucky that my doctor noticed a small black mark on my back during a routine physical. Thankfully it had clean margins, but since then I have to go back to the dermatologist every 3 months for full screens, and usually once or twice a year I have something new cut off.

Deadliest melanoma is more difficult to detect

Cancer researchers are saying now that the most dangerous form of melanoma is generally the most difficult to detect. Health Central reports that often these "thick" melanomas don't meet the standard "ABCD" criteria for a suspect mole (A for asymmetry; B for border irregularity; C for color change; and D for diameter change). So if you have moles you're worried about, seek professional medical advice. And if you're still not 100% confident about a negative diagnosis, get a second opinion. Doctor's have misdiagnosed melanoma cases before. Just because your doctor tells you you're healthy, doesn't mean you are.

Excerpts from Health Central:

Demierre believes the reason many of the thick, nodular melanomas are missed is that they don't fit the criteria that many people and their doctors have learned to recognize as skin cancer. People have been taught to identify skin cancer by using the ABCD criteria: A for asymmetry; B for border irregularity; C for color change; and D for diameter change.

"Really, a lot of melanomas present without any of the ABCD," Demierre said. "The moles become itchy, the changes are small, and those turn out to be the thicker melanoma, often the nodular melanoma," she added (study author Dr. Marie-France Demierre, director of the Skin Oncology Program at Boston University School of Medicine).

To deal with this problem, Demierre said that people need to be more aware of the changes in any mole.

"If you have a lesion that you are concerned about, you should have it checked," she advised.

"The bottom line is, if you have a lesion on your skin, and it's changing -- that is, it's getting larger, changing color, appears to be raising -- go see your doctor and get it checked. And you need to get there quickly, because this lesion grows fast," he stressed (Dr. Len Lichtenfeld, deputy chief medical officer of the American Cancer Society).

More on Torres Family

Here's another article on Jason Torres and his family from the Washington Post.

Excerpt:

For all anyone knew, Susan Torres was in perfect health when she found out in February that she was pregnant, and the couple greeted the news of a second child with the usual mixture of terror and joy. Susan was found to have melanoma when she was 17 but doctors then had given her the all-clear.

But soon her health took a turn for the worse, and Susan Torres stopped breathing on May 7. Torres called 911 and performed CPR until the ambulance came. At the hospital, doctors did a CAT scan and told him that his wife had no brain function, that she had a cancerous growth at the back of her head and that it had metastasized and bled, causing pressure on her brain

"She's becoming more noticeably pregnant," he said with quiet awe, sitting near the marbled cafeteria at Virginia Hospital Center in Arlington.

It is the place where he has spent the better part of his days lately in some emotional purgatory: grieving the loss of his 26-year-old wife, Susan Torres, who he believes is dead, "barring divine intervention," and yet hoping still to save the 5-month-old fetus she is carrying by keeping her body alive, at least for five more weeks.

"It's a race against time whether the child will reach viability ... before the cancer spreads," said Torres, 26, of Arlington. "We have a small hope that maybe. Maybe."

The Polka Titan

Polka master and member of the International Polka Hall of Fame, Verne Meisner, died from complications due to melanoma on June 10.

Excerpts from his NY Times obituary:

Considered one of the titans of polka, Meisner was a bridge between the classics of the Lawrence Welk era and the pop-infused polkas of contemporary artists. To thousands of fans, he was second only to Frank Yankovic, the acknowledged king of polka, who died in 1998.

Yes, Frank Yankovic is Weird Al's Dad.

LaVerne Donald Meisner was born in Milwaukee on Dec. 4, 1938, and grew up in Whitewater, Wis. He picked up his first accordion at 8, and by 11, was playing in local bars. As a teenager, he toured with Yankovic's band and also formed his own, Verne Meisner and the Polka Boys. It made its recording debut in 1958 with "Memories of Vienna," one of his best-known original tunes; his others include "El Rio Drive."

The Torres Family

I think one of the biggest misconceptions about skin cancer is that it's well, just "skin" cancer. As in, "it's only on my skin so it can just be scrapped off" skin cancer. If this story in USA Today doesn't drive home the fact that melanoma is more than just a "skin" cancer then I don't know what will.

I read a lot of stories related to melanoma and I know you can't quantify someone's pain and suffering but I'm not afraid to say this has got to be one of the saddest stories I've ever read about melanoma and how it's emotionally and financially devastating a young family.

I encourage you to read about Susan Torres and how she tragically may be the first brain-dead melanoma patient to deliver a baby.

Excerpts:

"How many rocks are they going to throw in your cart before you can't pull it anymore" he says he asks himself. "The answer, apparently, is a lot." (Jason Torres, Susan's husband).

Right now, the target is mid-July, when Susan will be about 25 weeks pregnant - 15 weeks short of a full pregnancy. That's the gestation age, doctors tell Torres, where a baby can survive though with a heightened risk of brain damage and vision and developmental problems.

Torres' goal is for Susan and the baby to reach the 30-week mark, when such risks are greatly diminished.

Torres knows that the baby's delivery date, when and if it comes, will be bittersweet. After the baby is born, Susan's body will be anointed in the Catholic tradition, and she'll be allowed to die.

"That could be a little rough," he says.

"But I'm not focused there yet. The question I keep asking myself is: When this is over, do I get to take a baby home?"

Christine Leroueil

Another popular teacher died way too early thanks to melanoma cancer. Christine Leroueil beat melanoma 20 years ago only to be diagnosed again earlier this year. This time however, she was only given a few months to live. She was 52 when she died on June 3. Her story.

Excerpt:

“Mrs. L was the best teacher a student could ever ask for. She was caring and understanding. To me, she was an inspiration, and I will never forget her,” a former student wrote in an on-line guest book.

"Base burn"

Checkout this column in today's Westerly Sun (Rhode Island) by Kathleen Currie. Currie admits to the stupid things most of us have done in the past like getting a "base burn" at the beginning of every summer and how that now leaves her uneasy about her risk factor. She also touches on the Vitamin D hype from a couple weeks ago. I recommend reading it if you're looking for an article that covers most of the bases on melanoma.

Excerpts from the Westerly Sun:

...this year a friend of mine, who just turned 30, had a melanoma removed from her chest. The surgery left a large scar. At 33 years old, I am beginning to notice wrinkles and spots on my own skin. I know that is damage caused by the sun. I wish I could go back in time and take protection seriously. The statistics I once read and believed irrelevant to me are hitting closer to home and, yes, I am scared.

Then this from dermatologist Mary Ann Bentz, M.D about the Vitamin D hype:

Bentz warns people about the recent news report that suggests unprotected exposure to the sun provides the body with sufficient vitamin D and may in turn prevent or even treat many cancers. "You can get all the vitamin D you need from fortified milk and multivitamins; it is not worth putting yourself at risk," says Bentz.