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Kari’s Story

Welcome and thanks for checking in!

Cruising on 12 years of battling the beast called stage IV metastatic melanoma and, I am still just as determined to win as I have ever been! Thankfully, we (the foursome at Camp Kaywoodie), are blessed with an amazing support crew of family and friends and a skilled medical team that has held on for the long, bumpy ride.  We are so grateful!

I was originally diagnosed with Stage IV metastatic melanoma in April of 2003 just as my daughter Emilia turned one.  At diagnosis, disease had spread to my lungs, femur and multiple sub cue locations and my prognosis was grave.  I completed 2 1/2 years of biochemotherapy and surgery at California Pacific Medical Center in San Francisco and was pronounced NED in 2004.  In recognition of the fifth anniversary of my diagnosis, I spent the first five days of May 2008 walking, with my father, from Napa to San Francisco (77 miles) to personally thank my physician,  Dr. David Minor and celebrate the gift of life.  It was truly the walk of my life! 

In May 2009 (the same month as my original diagnosis in 2003), I discovered somewhat 'by accident' a lump on my side. It was sudden and unexpected by all, doctors included. A biopsy quickly determined the lump was melanoma, surgery was done with no other cancer found, and I launched into an inpatient IL-2 protocol. Unfortunately, three month progress scans (mid Sept. 09) showed a new mass, launching a five month bicoastal diagnostic and potential protocol obstacle course.  Our search ended as of March '10, when after three attempts, I was accepted in the phase II PLX4032 trial at the UCLA.  I was an early and complete responder to the drug however, the side effects were severe and unfortunately, the disease returned by the end of the year.  

With few options available, I had surgery again in Jan. '11 to remove a tumor, muscle and nodes in my shoulder and were confident we finally had the upper hand. Despite our determination, melanoma is a crazy beast and it quickly returned.  After much discussion and debate regarding quality of life, impact on family, and attempts to forecast the future (ha, ha!), we made the decision for me to start on the newly approved drug "Yervoy" (Ipi) in May of '11.  

The response to treatment was positive and we enjoyed a few months "in the clear" only to have the end of the year bring the news that the disease had progressed to my brain.  Brain zapping commenced (gamma knife) and was followed with another course of Yervoy.  Thankfully my brain is showing signs of improvement (that is shrinking tumors!) but the disease in my body has not been stabilized.  2012 began with a storm of research and investigation on "what next" and it was determined that the immediate course of action called for the surgical removal of a mass in my duodenum.  The surgery was a challenging one but I  recovered well.  Radiation of seven additional tumors followed in conjunction with the another round (third) of treatment with Yervoy (Ipi) that will continued through summer.  Unfortunately late summer scans showed that my disease was again progressing and it was back to the hunt for a weapon to battle back.  In Aug. '12 I began a new 2 year trial (anti-PD1; Merck 3475) in southern California.  As of January 2015, another relapse has hit and we are exploring the best way to fight back.

As always, we remain guided by hope, astounded at the community that continues to surround us, very grateful for the incredible scientific advances that  provide us with treatment options and determined to live as full and "normal" of a life as we can. 

Latest Journal Update

2 Minutes on My Soapbox

Good Morning!  I woke up relieved today, relieved to have finished radiation which was a difficult step for me---painful physically and mentally.  I also woke up to this headline today which lit me up and shot me straight out of bed on to my soapbox.  Mothers, fathers, aunts, uncles, adults that care about young people...please share this and dispel the novelty quickly.  The only piece of artwork I can see fitting in this new trend is: Kick me Hard!  I'm a Dumbass!  In really big letters!!

Please feel free to give them my number (I'm serious), share my story, show them pictures of someone who has spent 12 years fighting for their life thanks to sunburn (I'll send you one of me in bed along with a list of everything I have given up and a list of the heartache ensued).  It is real, it is scary, DON"T GET SUNBURNED! I see so many teens and young adults that know better but don't bother to protect themselves.  Please don't stop parenting them--this is something that could impact their life forever.  Doesn't matter what college they get in to, or what amazing job they get, or what they accomplish---it can all be taken away lickety split because they did not take care of their skin in their early life!

Okay, off my soapbox and back to bed.  Thank you for taking my public service announcement to heart.  It is the real deal!!

I care about you and the young adults in your life!  


P.S.  Posting below is a current status update from Annie so please read on.



Cheryl Stratos
By Cheryl Stratos, plx4032 UCLA — last edited
Your are a true warrior. You have been in this race a long time. Stay focused on winning. This is the craziest marathon you will ever run. I know you are feeling beaten and tired but this is when you need to push forward. I know you can do it.
Brooksley Williams
By Brooksley
Thank you Kari for sharing your story (I read about it via Jennan's FB page) and I am thrilled to reconnect after all these years. We were all so silly back then, and I slather my children with sun protection in an attempt to avoid the trials you have endured for more than a decade. Your life, hope and perseverance are so inspiring - please know that I am thinking of you!
Linda and Jeff Hiller
By Linda and Jeff from NV
Kari ... that news item shot me up in the air too! Wow, so hard to think of the future of people who intentionally burn, much less those who don't do it on purpose. I remember looking out of Jeff's room in T-6 at CPMC back in early 2008, listening to his machines quietly beep as he slept while getting biochemo, and there was someone sunbathing on the roof of a nearby building ... I wanted to scream at them! We learn too late, sometimes, but we can sure share our knowledge. Maybe post that on Facebook! Sending you good and healing juju ... Dr. Kim may have actually used the NED term with Jeff's last brain MRI a week ago!!! Always encouraging to know others are having success, just like we CLUNG to your great success when we were in the thick of the worst of it in '08 ... remember ... it's an ongoing chronic disease and you are in it for the long haul. We all love you!!
cat owen
By cat owen
Kari, I am so happy you posted. It was wonderful to hear your voice again. You are all fired up and continue to fight for yourself and others. Never give up that spirit because in the end of this journey you will win and be NED. Praying for you now and always.