Thursday, September 29, 2005

in sickness and in health

We received this email recently from a gentleman in the United Kingdom who's 29-year-old wife is dying of melanoma. With his permission, we are posting his email below. This is yet another tragic example that although early treatment is very effective in treating melanoma, it can come back stronger than before. So if you have been treated in the past, please go back for annual checkups. Based on examples I've read like this, I don't know that you are ever really "in the clear" after having a mole removed. This is such an insidious and aggressive disease that there is always a chance it can sneak back. The Susan Torres story is a recent reminder of this.

Please read the story below about how his wife is bravely going through this. She has already arranged for her own funeral.

Subj: Hi from the UK

Hi, my wife had a mole taken off 5 years ago from behind her right ear, it was malignant melonoma but a wide cut was taken and we were told it was a clean cut and she would need to go to clinic as a precaution!

Nothing has ever shown itself until may of this year when a small blue lump came up on her back we also noticed 3 more on her skin, after a biopsy again we were told it was malignant melonoma but because it had moved around she was to have a scan! our worst nightmares were confirmed after the scan as she has 3 tumors on the liver and 2 next to her brain 1 of which is 3cm's in size!

She has had radiotherapy and at present going through chemotherapy is on steroids and in only 3 months she has changed in looks and personality to a point that some times i cant see the girl i married, Malignant melonoma although caught early and cut out is pretty much curable but when it has spread it is incurable and treatment rarely works and is only given to prolong life!

My wife (Denise) is only 29 years old we have a 4 year old boy and a 2 year old girl, Denise has only been given 12 months to live! the scary thing is that she never knew until this lump appeared and then it was too late, Malignant melonoma is on the rise and here in the UK it is going up 7% a year and up to 2000 people die from this cancer each year, it effects all ages but now is showing up more and more in younger people and we need to raise awareness.

My wife has been so far an inspiration to me and to others, she has accepted she is going to die and is now determined to send out the message about melonoma and is raising money for cancer research, making and selling bandannas for charity and is holding a fund raising event in October for Malignant melonoma research in which we have already received a cheque for one thousand pounds, she is suffering but refuses to lay down and is carrying on as normal as possible for the sake of our children and people around her as she is aware this effects all around and not just herself.

She is so on top of this that she has even arranged her funeral ! at first i was not sure i could handle this myself and watch her die but seeing how she has coped and got on wtih life has made me realise that i have to be strong for her and for my kids and i am determined to carry on fund raising in her name after she has gone and also determined not to let this bring us down and give my kids the best i can. For now even though it's the toughest time of our lives i will do what i can for her no matter how hard it gets! i vowed "in sickness and in health" and i intend to live out that vow with no question, final word must go to my wife who i love dearly and i am so proud of, you fight with all your might and i will be there all the way!

I have looked around your website and it is something i myself am looking to do for Denise as a UK based site with chatrooms and forum with links to relevant sites for information and look to aim it at the younger sufferers of melonoma, somewhere to find all the info you need in one place even down to what government benefits you are entitled to.

Denise has made frontpage news this week in our local paper telling her story and put a plea out for fabric to make her bandannas !

We have been inundated with offers and also some donations, on tuesday we have a national magazine coming round to do a simular article and we are going to ask for help in starting a website, after seeing your site and how good it is has made my mind up to do this, both Denise and i are sorry to hear of the loss of your daughter, we are determined to do what we can to help others and raise awareness of this cruel disease and i intend to carry it on after Denise has gone all i her name (even if i have to learn to sew and carry on making bandannas) i wish you luck in all that you do to help others, and thankyou for a website that has given me the inspiration to do my own!

Saturday, September 24, 2005

Schlip Bowl-A-Thon Fundraiser

If you're going to be anywhere near Nashua, New Hampshire on October 16th and you like to bowl, you should checkout the Schlip Bowl-A-Thon Fundraiser benefiting melanoma cancer research. The fundraiser is held as a tribute to James A. Schlipmann who died from melanoma in 2002.

New FDA Comissioner

I don't know if this will have an impact on cancer-fighting drug approvals but the newly-appointed FDA commissioner, Dr. Andrew C. von Eschenbach, is the director of the National Cancer Institute as well as a melanoma survivor.

Excerpt from the Associated Press:

Crawford's replacement, von Eschenbach, is a urologic surgeon. A Philadelphia native, he took over the National Cancer Institute, the government's lead agency in researching cancer treatments, in 2002. Prior to that, he served as chief academic officer of the University of Texas M.D. Anderson Cancer Center in Houston.

Von Eschenbach wrote in 2004 that he has survived three cancer diagnoses: melanoma in 1989, and more recently, prostate cancer and basal cell carcinoma.

In published articles, von Eschenbach has laid out an ambitious — some would say unrealistic — goal of eliminating suffering and death due to cancer by 2015, turning it into a manageable disease.

Thursday, September 22, 2005

John Reeves Hall

John was a self-described 24-year-old "hacker/geek/pilot" who lived in Southern California and was diagnosed with stage-IV melanoma. He had a blog that I have linked from this site called "John Hall's War on Melanoma." Unfortunately, John's war ended Saturday night. If you haven't already, I encourage you to check out his blog to get a glimpse of what it's like to suffer through something horrible like late-stage melanoma.

Excerpt from John'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.

Leanne Schmall

About a year ago Leanne Schmall had a mole removed from her back. Doctor's gave her a clean bill of health. Then in July she was diagnosed with late stage melanoma. Leanne died last Wednesday. She was 16.

Excerpts from the Milford Daily News:

Like the candles neighbors lit in support of 16-year-old Leanne Schmall's fight against cancer, wristbands bearing words the teen took to heart are spreading across town.
"Hope, courage, faith," read the purple bands, which are being sold by Franklin Youth Hockey parents to benefit the Leanne Schmall Foundation.
Schmall and her three brothers all have played in the league, which sold more than 500 wristbands in about a week, said Christine Cannon, one parent running the effort.
Wristbands for Leanne coincides with several other fund-raisers planned before Schmall died last Wednesday and continuing in her memory. These include a country and western fund-raiser at the Franklin Elk's Lodge Saturday, and raffle tickets on sale for a $10,000 kitchen from Custom Kitchens on Grove Street.
All proceeds donated to the foundation benefit the teen's family.
Briana Schmall, Leanne's mother, said the family appreciates these gestures during a difficult time. "It absolutely helps in many, many ways," she said Tuesday. "Hopefully, we can get a scholarship started for when Leanne's class graduates."


The wristbands also help kids express feelings about the loss, said Cannon. "It was a way for us to give the kids a way to show their support for the family," she said. "They were feeling very lost."
Judy DiRosario, another parent helping with the fund-raiser, said she felt strongly for the Schmall family. "I wish there was more we could do for them," she said.
Anyone interested in buying wristbands for $3 can contact Christine Cannon at 508-541-8824, Wayne Green at 508-528-7132, or Judy DiRosario at 508-528-5668.
Payments can also be made out and sent to Christine Cannon with "Wristbands for Leanne" written in the memo, to 9 Kingswood Drive, Franklin, MA 02038. Include your address.

Saturday, September 17, 2005

BBC NEWS: Courage of cancer mom is honored

A magazine awarded a melanoma victim with the "Mother of the Year" award posthumously.

Excerpts from BBC News:

Amie had first developed a problem with her eye when she was pregnant with Lee in 2002.

Lee was born that August and by December a skin cancer had spread to the back of Amie's eye and to her liver.

She had terminal cancer and was initially given just 12 months to live, but she battled on for two and a half years.

Deborah and Lee Deborah Hughes now looks after her grandson Lee.

Her mother, also from Rhayader, has said it was because she did not want to leave her son.

"The hardest part of the treatment for her was not having the energy to play with Lee," said her mother.

"Lee was the reason she survived so long," she added. "Her sheer guts and determination - she just didn't want to leave him.

Jo Checkley, editor of magazine That's Life, which awarded the Single Mum of the Year prizes, said: "Amie's death moved us to tears.

"It was a deep, deep tragedy and we feel humbled and honoured to award this prize in Amie's memory to her mother Deborah.

"As Lee grows up he will realise what an incredibly brave mum he had."

Tuesday, September 13, 2005

Devastating Loss

Story in USA Today.

Susan Anne Catherine Torres died after emergency surgery for a ruptured intestine, her uncle, Justin Torres, said in an e-mail. The baby was born three months prematurely, on Aug. 2, to Susan Torres, who was kept alive on a ventilator for nearly three months so she could deliver the baby.

The baby's death brings a tragic end to a story that had touched a responsive chord around the nation and the world. Well-wishers from as far as Pakistan, Chile and
Iraq sent the family books, cards, pictures and prayers. As of last month, about $600,000, ranging from a $15,000 anonymous contribution to the nickels, dimes and quarters from a child's piggy bank, had been collected to help pay bills.

Doctors told the family theirs was the first case they found of a child born to a brain-dead woman with melanoma.

The baby had been gaining weight, the family said on its Web site last month. But over the weekend, an infection developed and the baby's condition deteriorated rapidly. She died at Children's National Medical Center in Washington.

"After the efforts of this summer to bring her into the world, this is obviously a devastating loss," Justin Torres said in his e-mail. "We wish to thank all the people who sustained us in prayer over the past 17 weeks. It was our fondest wish that we could have been able to share Susan's homecoming with the world."

Monday, September 12, 2005

Some really bad news.


Late last night, five-week-old Susan Anne Catherine Torres passed away from heart failure at Children's National Medical Center in Washington, D.C., following emergency surgery to repair a perforated intestine. The surgery was attempted after a sudden deterioriation in her condition over the weekend.

After the efforts of this summer to bring her into the world, this is obviously a devastating loss for the Torres and Rollin families. We wish to thank all of you who have sustained us in prayer over the past 17 weeks. It was our fondest wish that we could have been able to share Susan's homecoming with all of you.

The family will be making no further statements at this time. All media inquiries can be directed to Children's National Medical Center.

Monday, September 05, 2005

What makes melanoma so malignant...

Melanoma cells apparently don't have to learn how to spread and that makes them so much deadlier than other cancer cells. At least that is what recent research is suggesting. These findings by the Whitehead Institute for Biomedical Research were published recently in Nature Genetics and they are all over the medical news today. Unless you have a medical degree, you'll most likely get more out of the articles below than the published research in Nature Genetics:

BBC News

Excerpts from BBC News:

Lead researcher Professor Robert Weinberg said: "Other cancers need to learn how to spread, but not melanoma.

"Now, for the first time, we understand the genetic mechanism responsible for this."

The spread of disease to an unconnected body part - known as metastasis - is a highly inefficient, multi-step process that requires cancer cells to jump through many hoops.

The cells first must invade a nearby tissue, then make their way into the blood or lymphatic vessels.

Next they must migrate through the bloodstream to a distant site, exit the bloodstream, and establish new colonies.

Researchers have wondered why melanoma in particular is able to do this not only more efficiently than other cancers, but at a far earlier stage.

The latest study shows that as melanocytes - cells that protect the skin from sun damage by producing pigmentation - morph into cancer cells, they immediately reawaken a dormant cellular process that lets them travel swiftly throughout the body.

Central to this reawakened process is a gene called Slug which plays a key role in allowing cells to travel around the developing embryo in the womb.

Normally the gene is shut off in adult tissues, but the researchers found that when skin cells become malignant they reactivate Slug, and thus immediately acquire the ability to spread.

Dr Julie Sharp, senior cancer information officer at Cancer Research UK, said: "If scientists can target treatments to block the Slug gene, they might be able to prevent cancer spread and improve survival from this disease in the future," she said.

"It is also important to remember that the vast majority of melanomas are caused by UV damage from excess sun exposure."