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Melanoma in Children is a Growing Trend

Some disturbing figures in this video.  Melanoma is on the rise in children and over all the incidence has gone up 44%!  That is so scary.  What is it?  The ozone?  Something we are eating?  Something we are putting on our skin?  See this article on sunscreen.  Or is it some kind of deficiency?  I think the best thing to do is to be very aware of any changes on your skin and your childrens’ skin.


Meeting the Faces of Melanoma

 Last night we attended “Champions for a Cure” – a charity melanoma event in San Francisco benefiting the Melanoma Research Foundation.  The best part was meeting others with melanoma.   We didn’t know what to expect.  So we were stuck by how young (and great looking) everyone was!   It was nice to meet Erin, who helped organize the event – so funny to compare scars!  We laughed that the people with melanoma should wear some kind of badge so we could find each other. I wanted to go around the room and ask – do you have melanoma?  You would never have known by looking.   Everyone looked so great.

It was a bittersweet evening.  Watching a 26-year-old with Stage 3 melanoma cry during most of her speech was heartbreaking.  And another young lady (stage 4) also in her 20s – found out she has a new tumor 2 days ago after being on an experimental gene inhibitor trial that seemed to be working for her.   It is so frustrating and sad.

They spoke of the new drugs that are just on the horizon for melanoma and everyone agreed that we are finally at a turning point.  There have been no new drugs for melanoma approved for over a decade.  We will soon hear about some new drugs with the ASCO June conference  approaching.  

The evening raised a ton of money with a great live and silent auction.  They auctioned off a lunch date with Lisa and Brittny Gastineau – from the reality TV show about the New York socialites.   Lisa is a recent melanoma survivor. 

It is a very exciting time for melanoma research.  So I encourage all of you to donate to the Melanoma Research Foundation.  Not only do they help support the patients mentally with online forums, they fund the research to battle melanoma. 

We like the black wristbands that we got.  They say ‘fight the beast’…so fitting for melanoma.


Isn’t it Ironic?

Emily's Leg

Mole removal and Sun Tattoo

When I turned 21, I got a tattoo.  See it in the picture – it’s a sun.  You see, I have always loved the sun and all things associated with it – the warmth, the tan, the beach, the pool, the vacation, etc. I was always tan – been in sunbeds countless times, and never knew anything about melanoma.  So I got a sun tattoo and now I find it ironic that the thing I loved so much is now partly responsible for causing me so much pain.   And it is stamped on my ankle to remind me of how naive and young I was.  Even the week before Mike was diagnosed I sat with my two friends at the pool with no sunscreen – and actually said “I don’t understand how skin cancer can kill you.”

May is melanoma awareness month.  So I preach to everyone to get their skin checked.  I actually switched primary doctors so I could get a referral to a dermatologist.  My previous doctor had made me feel like a hypochondriac when I asked her to check some moles after telling her my husband had just been diagnosed with melanoma.  She looked at the moles and brushed me off.  So I switched doctors and I am now under the care of Mike’s doctor who immediately gave me a referral to the dermatologist for a mole map.  So this week I went to the same doctor that diagnosed Mike.   It was weird sitting in the same place where he got the news – but back then, ignorance was bliss and we were clueless as to what melanoma meant.  Now that I was so hyper aware of my moles and skin and the consequences – I waited nervously for the doctor.  When she came in, I told her my sins and we discussed my situation.  She asked me to make the decision about two moles that she wasn’t that worried about, but knew leaving them there would just stress me out.  One on my chest, one on my thigh. One tiny little black mole and one small brown/tan mole. They only exhibited two of things to watch for in the ABCDEs of melanoma.  But I told her to take them off.   Good bye, good riddance.  Biopsy results in a week.  As she whipped out her knife, she told me how she had diagnosed some very young people with melanoma.  In their 20s.  At the same age I was when I got my sun tattoo, these young people were being diagnosed with cancer.   It really makes me wonder what is causing this disease to strike young people and older people more often than before – is it the sun/ozone, sunbeds, or something else we just aren’t aware of yet?

Anyway, I hope you all will get your skin checked.  The biopsy doesnt hurt, I promise.  Get the melanoma off early and its highly curable.  Let it sit and you are playing Russian Roulette.

My sister in law works for Stanford’s melanoma dermatology department and they are offering free skin checks on May 22 from 9am to noon.  Mike and I will be there to help – hope you can join us:

http://outpatient.stanfordhospital.org/clinics/dermatology.html?WT.mc_ID=dermatology


Vita Mix’n

Vita Mix Green Smoothie and Mustache

Vita Mix Green Smoothie and Mustache

We were so thrilled when Mike’s Uncle Jim surprised us with the coolest (and hottest) blender in the world. A bad-ass Vita Mix.   Vita Mix and BlendTec make these “super blenders” that are so powerful you can grind an Iphone into dust (see the BlendTec video).  But we aren’t going to use them for our cell phones.  We are going to throw in some raw, whole fruits and veggies and drink them up with all of the fiber and nutritional glory they were meant to have.   You can even make soup in the Vita Mix – it cooks it right in the container due to all of the friction from the 2 HP motor. We made our first green smoothie and it was so good – cucumber, spinach, parsley, grapes, orange, and ginger.  You just peel and blend.  Super healthy way to drink your fruits and vegetables every day.  Dont get me wrong, we still need to have some fun – so we are going to make “whole fruit” margaritas on occasion.  You literally just toss in the entire peeled lemons/limes with your tequila and ice.  Yum!


From Warriors to Angels

Two Melanoma Warriors became Angels this past week.  Both young fathers, their battles were brave and heartfelt.  As they fought, their wives tried everything they could to help them.  Whether it was prayer, challenging pharmaceutical companies, keeping their husband’s pain at bay, driving long distances to the hospital, blogging to keep everyone up to date, taking care of their devastated children – they did it for love.   These amazing women are also Melanoma Warriors and they will remain so – now with their loving husbands as guardian angels looking after them from above. 

Rest in Peace.

Marcus Stanley, Age 35

Clint Slatton, Age 39


Champions for a Cure – Melanoma Event in San Francisco

Champions for a Cure - May 20

Champions for a Cure Invite - May 20

Mike will be honored as a melanoma warrior at “Champions for a Cure” – a fundraising event in San Francisco on May 20. This event benefits the Melanoma Research Foundation and the festivities include wine tasting, food from local restaurants, and fabulous music! The cost is $150 a person. We know it is expensive, but… if you can join us, we would be so grateful and excited to have our friends and family with us. It is for a good cause – MRF funds research programs and helps patients.

http://www.melanoma.org/get-involved/champions-cure

See the PDF of the invite

Thursday, May 20, 2010 – 7 pm to 10 pm

The Presidio of San Francisco Officers’ Club
50 Moraga Avenue, San Francisco, CA

The evening’s festivities include wine tasting from nearby wineries, samplings from local restaurants, a silent and live auction, and fabulous music!

Honoring Champions:

Dr. Jeffrey Binstock, UCSF Medical School, Clinical Professor of Dermatology

Dr. Hayes Gladstone, Stanford University, Director and Associate Professor, Division of Dermatologic Surgery

Dr. Seth Matarasso, UCSF Medical School, Clinical Professor of Dermatology

Dr. David Minor, California Pacific Medical Center San Francisco

Mistress of Ceremonies Carolyn Johnson, ABC News Anchor

Special Guests: Bay Area Sports Champions

Advance ticket: $150

For more information and sponsorship opportunities, or to purchase tickets, contact Mary Mendoza at 800.673.1290 or mmendoza@melanoma.org.


Our Cute Kombucha Babies

We have a new addition to our family. It is called Kombucha. We will try anything that claims to help fight cancer after a diagnosis of melanoma. It is a drink that originated centuries ago and is made by fermenting sugared black or green tea in a jar for a couple of weeks. But it doesn’t work unless you have a SCOBY which stands for symbiotic culture of bacteria and yeast (also known as a mother). That is the large flesh looking thing. We got our scoby from my mom’s friend but you can order them online or get them on craigslist. We named ours Loogie. Each time we make a new batch, Loogie makes a new “baby”. Then we put the baby in the next batch. We are on our third batch and it gets better each time. It makes a natural carbonation. Kombucha tastes like a vinegar, apple cider and champagne combo. It has billions of probiotics and is high in antioxidants. Yes I know it sounds and looks gross. But it really isn’t. It is really good for you. Try a bottle the next time you are at Whole Foods. At $3 a bottle we are saving money by making our own. Here is a good recipe and we are happy to give you a Loogie baby to start your own batch. http://www.instructables.com/id/Making-Kombucha/

NY Times article on Kombucha (we should have been interviewed for this!) http://www.nytimes.com/2010/03/25/fashion/25Tea.html

Mike and our newest Loogie Baby


A mother’s inspirational skin cancer battle

Katie was a beautiful young mother of the three in the UK who died in late February of Melanoma.  When I saw the story below, I tracked down her blog “Katies Fight” and it was truly devastating, sad, beautiful, and inspiring to read.  She documents the short two years of her battle with unbelievable grace and wit.  It was very scary to read how she went from Stage III in July 2008 to Stage IV in October 2009, and so quickly to her death last month.  For me, her story was somewhat comforting because she accepted death so bravely and I really admire that.

I hesitate when posting these stories.  It is the outcome we fear the most and it is very hard to read something that doesn’t have a happy ending – especially for those battling Melanoma.  I am sorry for that.  But I do it to show people that this cancer can affect anyone.  I do it to make people understand.  And I do it because we can all learn from her journey – it is one we all will face in some way or another.

Article was from the BBC:

Doctors never discovered the mole that led to 37-year-old Katie Pratt’s skin cancer.

The first the mother-of-three knew about it was when she had developed malignant lumps in her neck.

Friends and family were inspired by her courageous fight with the disease, which she chronicled in a regular blog.

But two years later Katie was dead…read the rest

Katie’s Blog – “Katies Fight”


My Melanoma Mindys

Black for Melanoman Ribbon

Black for Melanoma Ribbon

These are the blogs of my two favorite Mindys…

They are in the midst of a battle with Stage IV Melanoma.  One as a patient, one as a wife. If you know me, you know that I am not religious.  They make me pray.  Please send them your prayers.

Mindy Stanley – Melanoma Wife

Mindy Lanoux – Melanoma Warrior

Featured in the NY Times article on MD Anderson Cancer Center.

Keep fighting.  Love to both of you…

Em


NY Times covers the heartbreak that is Melanoma..and a miracle drug

BRAF Drug Scans

riddled with melanoma

The New York Times is publishing a series on cancer research and a miracle drug for melanoma. These pics are before and after scans of a melanoma patient only 15 days after taking PLX4032 – a drug that inhibits a BRAF gene mutation and has very little side effects.  The drug is in Phase III clinical trials and there are so many people who want to get into the studies that they have had to close the door to people who really need it.  Some people on the trial have relapsed and died while others remain free of tumors.  But on average it has extended the life expectency of the Stage IV Melanoma patient by 6 months.  I am hoping that they open the door for compassionate use after these stories are published.   Mike is being tested for the BRAF mutation – present in 50% of melanoma patients – just in case.

New York Times: Part 1 of 3: A Roller Coaster Chase for a Cure

http://www.nytimes.com/2010/02/22/health/research/22trial.html

New York Times: Part 2 of 3: After Long Fight, Drug Gives Sudden Reprieve

http://www.nytimes.com/2010/02/23/health/research/23trial.html?pagewanted=1&hp

VIDEO: http://video.nytimes.com/video/2010/02/22/health/research/1247467133833/last-chances-first-responses.html

New York Times: Part 3 of 3: A Drug Trial Cycle: Recovery, Relapse, Reinvention

http://www.nytimes.com/2010/02/24/health/research/24trial.html

VIDEO: http://video.nytimes.com/video/2010/02/23/health/research/1247467149391/uncharted-waters-fragile-hopes.html


They grow so quickly…

Aidan Age 1

My baby doll - almost age 7 Aidan Age 6.8

A fine Irish 3 year old

Caitlin – Age 8

Elton John Age 3

Elton John Age 1


Phew! What a relief. Now what should I worry about?

Mike got his 6 mos PET scan results last Friday.   He is all clear – NED (no evidence of disease) is what they call it.  So we celebrated and words can’t explain the relief and joy.

My melanoma friends will agree – scan time is very traumatic.   Mike had to practically push me up the stairs of the doctor’s office on Friday. Knowing that this appointment could change our lives so radically is part of what bothered me – I didn’t want to face that again. Would the upcoming months be filled with chemo and illness versus proceeding with life “as usual”?   During the drive over,  I lectured Mike on what we would do if we got bad news….we could fly here for this trial or there for another.   People make fun of me for being so negative in this situation.  I am not being negative – I am trying to feel in control of something that I can’t control.  Being prepared for what happens next – good or bad – makes me feel better. So until July, when Mike has his next scans, we will work on enjoying our  “normal life”,  appreciating things that used to seem mundane, and I will try to stop worrying so much… but I won’t stop trying to be prepared.

Em


UCSF Melanoma Center is fun!

Well it’s kinda fun – for me more than Mike. 

Today Mike got his usual check up – they feel his lymph nodes, check weight, BP, etc.   All good!  His BP is down, but we cant figure out why he has lost only 4 lbs after starting his workout regime that consists of getting up at 5am and going to the gym 4 days a week and running 5 miles the other days.   He eats way too many pistachios.  That is my theory.

So why is it fun for me?  I get to talk to the people who know all the latest and greatest on Melanoma.  I rattle out all my favorite Melanoma terms – Breslow, anti-CTLA, Ipilimumab, Leukine, BRAF and they understand me!   In fact, I so impressed them with my knowledge, that I was invited to be on the UCSF melanoma tumor board (this was a joke of course).    Anyway, during the 1.5 hours a day I spend on the train –  I usually read Melanoma research on my iPhone.   Today’s visit confirmed that it was worth it. 

At UCSF today we reviewed Mike’s options, they gave us the prognosis numbers, and discussed his possible next steps.  We already know there arent many effective drugs or options for anyone with Melanoma.   Interferon is a immunotherapy (it is not chemo) and it is the only drug the FDA has approved for Stage 3.  You take a high dose for one month (5 days a week via  IV)  and then self inject at a lower dose for 11 months – or for however long your body can take it.  It is highly toxic with bad side effects including depression, nausea, fever, fatigue, etc.   Most people cant work during the first month.  Interferon’s track  record is not so good – stats show that it doesnt improve overall survival – it just prevents recurrence for some (5-10%).   But it is all that is out there – unless you can find a trial that accepts you.   The other option is to do nothing – but most people have a tough time doing nothing when they have cancer.  It was nice to hear from UCSF today that  both options are perfectly acceptable.  So we need to make that decision. 

That decision is the part that is not so fun.


Stages of Grief and Stages of Melanoma

These are the stages of grief.  We have been through most of them over the past couple of months:

  • Denial (this isn’t happening to me!)
  • Anger (why is this happening to me?)
  • Bargaining (I promise I’ll be a better person if…)
  • Depression (I don’t care anymore)
  • Acceptance (I’m ready for whatever comes)

We are now in the Acceptance stage and now we are getting ready for the next one:  it is called the Fight The Beast Like Hell Stage.

Acceptance Stage:
Two weeks ago we  got word from UCSF regarding Mike’s lymph node biopsy (second opinion).   They concur with the original diagnosis of isolated tumor cells – but they can’t give us the number of cells other than saying there are “rare single melanocytes” present “but cannot completely classify them”.  What this means is they think there are cells but they arent positive they are cancerous but they will say they are to cover themselves.

This means Mike is stage IIIa.  With Melanoma,  if you have any cancer in your lymph nodes – no matter how small – you move into the Stage III category.   He will always be Stage III (or he could move to Stage IV – but lets not think about that) because you can’t go backwards with the stages of cancer.  When you have cancer, suddenly the rest of your life is measured in 5 year increments (this is known as overall survival – OS).   Some state the overall survival for Stage IIIa Melanoma between 63 to 69% for 5 years. Other calculations (http://www.melanomaprognosis.org/) range between 84.5% – 90.3%.  We like the second one better!

Fight The Beast Like Hell Stage:

They dont call Melanoma “The Beast” for nothing.  So I have taken a deep dive into Melanoma research – drugs, clinical trials, you name it.  I am a walking database of Melanoma info and I apologize to my friends and family for my obsession. Honestly, I really don’t care what you think.  I need to know everything about “the beast” – so we can kick the shit out of it.  Mike says I saved his life by noticing his mole in July.  I say:  you haven’t seen nothing yet.

Em


And we wait for melanoma some more…

We are STILL waiting to hear from UCSF on a second opinion of Mike’s lymph node biopsy.  It has taken over a month.  The typical biopsy takes a week.  We arent really sure why it is taking so long – but we know that the pathologists are having a hard time concluding whether or not the cells found in his one lymph node are cancer.  This week UCSF ordered the path slides from the original mole biopsy that was done in the dermatologists office – this is after they ordered the lymph nodes (stored in wax) from the seninel node biopsy.  They said the final report will be ready end of next week.    

My New Zealand friend Vanessa sent me this link to a public service campaign in Australia.  They are showing the footage of a wide excision (the surgery Mike had in August) to scare the hell out of people….great concept.  http://www.skincancer.gov.au/


Christmas Fun

Even though we had cancer and a car accident as part of our holiday, we always manage to have fun!   


Melanoma Wine Event in San Francisco

We are excited to attend the Melanoma Wine Event December 10 in San Francisco.  It benefits the Melanoma International Foundation which has helped us greatly during the past couple of months.


A Beautiful Family – On the Inside and Out

Pics of our family on Turkey Day at the McAuliffe’s


The Melanoma Waiting Game

One thing we have gotten pretty good at due to Melanoma – waiting. Anyone with cancer will tell you – the waiting is one of the worst parts. Waiting for news on biopsies, scan results, doc appts, etc. It sucks, but you learn to deal with it. We waited a lot this past week. Last Wed, we waited in the surgical oncologist’s waiting room – it was so crowded that we had to wait outside the door for a while because there was no place to sit inside. While we waited, we saw others waiting. We even saw a very young man (maybe early 20s) with Melanoma waiting with his dad to see our doctor (we tried not to stare, but he had a huge wound on his neck from surgery to remove all of his lymph nodes). Today we waited in Mike’s medical oncologists office. The lady before us had brought 4 members of her family to chat with the doctor so we knew we would be waiting a while. And now we are waiting again – for the second opinion on Mike’s lymph node biopsy from UCSF. We should know on Tues.  But if not, its no big deal, we will wait more.  We are pros now.

PS – While we were waiting, we read about the latest news in Melanoma and it gave us hope:

http://health.usnews.com/articles/health/healthday/2009/11/25/implantable-cancer-vaccine-shows-promise.html
http://news.yahoo.com/s/hsn/20091126/hl_hsn/implantablecancervaccineshowspromise
http://www.earthtimes.org/articles/show/incytu-cancer-vaccine-implant-able,1069213.shtml


Toxic Food and T-Day

Even after watching the movie Food Inc, we enjoyed a gluttonous non-organic turkey dinner (cooked two ways – deep fried and BBQ!). But that movie (and a cancer diagnosis) made us think and we are making a big effort to eat locally and organically. I am also reading Master Your Metabolism (Jillain Michaels) which is not about a diet – but covers the importance of eating whole foods and how toxins can affect your endocrine system.

In addition, I have seen so many reports about the fish in our rivers – they are not reproducing because all the males are turning into females!! The males actually have eggs sacs in them – this is due to chemicals that make estrogens.  Mike used to catch salmon off San Francisco Bay but the fishing season has been canceled for a couple of years now because there are no fish.  See the New York Times article below – these estrogen laden fish are like the canary in the coal mine…what’s does this mean for humans?

Study links estrogen exposure to fish kills, disease

http://www.nytimes.com/gwire/2009/06/04/04greenwire-study-links-estrogen-exposure-to-fish-kills-di-29535.html?scp=3&sq=estrogen&st=cse


Dead of Cancer at 30

Sorry for the shocking title – but it is the cold, hard truth for those with Melanoma.  It kills so many people – one person every hour – and doesnt discriminate by age.  I read absolutely heart-breaking stories every day.  Just this past week – a 28 year old young mother who died 3 months after giving birth to her twins,  a 30 year old father with four children …and countless more stories of Melanoma deaths.

But I don’t see these stories in the mainstream media.  I hear lots about breast cancer – especially with the new recommendations for mammograms.  But not about the skin cancer that is killing young students, mothers, fathers, etc and for which there really is no good treatment in later stages.  A cancer that is actually curable if caught early by a skin screening.   In Australia, everyone is aware of the dangers of Melanoma because they have an ongoing public service campaign designed to scare adults and teach children about the importance of protecting yourself from the sun.   But that is not the case in the United States.  I admit – I was one of those naive people who didnt understand this cancer and what it could actually do. Sadly, I am now an expert.  And there is no doubt that a skin screening can save your life.

I found this video from a couple of years ago – of the celebrity chef, Giada de Laurentiis – who was co-hosting the Today Show.  Giada’s brother, Dino, passed away from skin cancer when he was thirty years old.  He waited to go to the doctor after a mole started to itch and bleed.  He died two years later.

http://video.msn.com/?mkt=en-us&brand=msnbc&vid=1f41b7c0-bfb6-4ae8-aa77-665cc91dc28d

For  more heartbreaking stories, just read the comments at the end of this post:

http://allday.msnbc.msn.com/archive/2007/03/29/105144.aspx?p=1


Halloween 2009

Aidan is the murderer from the movie Scream.  No, he hasnt seen the movie.  Caitlin is a “monster bride”.  More pics to come. 

Pumpkin Guts

Pumpkin Guts

Halloween 2009

Halloween 2009


This is our first post

I am no longer a WordPress virgin

mike an emily

Mike and Emily 2009