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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

Messin’ w/ Texas & Feelin’ a Bit Saddle Sore

Upon Googling, I find the solution to treating saddle sores is first and foremost to reduce the friction.  From there it sounds as if limiting the bobbing and swing motion will also help.  So, we are in full swing attempting to do all three.  Unfortunately, my last trip to Los Angeles, suddenly pitched me (us) back in the saddle in a big way.  A series of scans showed multiple new masses and confirmed that I have relapsed. I swiftly lost my spot on trial and was sent galloping away without any fanny-padded jodhpurs to be had.  With that, we are doing all we can to quickly get right side up after feeling as if we were hanging from the belly of said galloping 16 hand wild horse.

With this change, I am no longer being seen at Angeles Clinic and have returned to the care of CPMC, aka “Dr. Minor’s office”, where Dr. Minor retired and Dr. Kim has taken over his practice.  Thankfully, within 24 hours of our news, our amazing team of medical resources (including Dr. Minor) had weighed in from around the country with a plan of attack.  All acknowledge that we are in new territory, with no cutting edge single agent option sitting on the horizon for us to latch on to. However, they believe that there are creative ways to pair the many of the new therapies that have come to market in recent years in order to gain stability.  We are so grateful to have a plan in works to hopefully still the bobbing and swing motion of our ride.

As it stands right now, David and I are sitting in Houston airport after a two-day dog and pony show at MD Anderson. We are considering the TIL (tumor infiltrating lymphocyte) process, which is a bit like a bone marrow transplant monster truck style, and is only available at a couple of sites worldwide. While pioneered at NCI (National Cancer Institute), the program at MDAis very well established, more flexible, and run by doctors that came from NCI.  This protocol involves tumor removal; a laboratory process that isolates and expands T cells from your tumor (cells that work in immune response), and then reinfusion of your T cells after many rounds of inpatient chemo. This is followed with high dose Interleukin-2 (IL-2) as a growth factor to rev it all up with that goal that these expanded TIL will home into and attack tumors. This all falls in a powerful form of cellular therapy for cancer called “Adoptive T-cell Therapy” (ACT) and translates to shacking up in Texas for a month if we decide to take that trail. 

The process is by no means a simple solution as there are a formidable host of variables that can knock you off course at any point.  We have cleared jump #1: Acceptance for Screening. This hurdle includes one’s ability to function at a high administrative level and deliver reams of historical reports (12 years worth) on very short notice, followed by jumping on a plane and flying to Texas on same said short notice.  Upon landing, a slew of tests and having a tumor that the surgeon deems worthy complete screening.  Thursday was test/screening day, which translated to 9 hours in the MD Anderson Cancer Center where we are pretty sure one could complete an entire marathon worth of mileage, no problem. The place –included multiple eateries, a hotel, hair salons, post office, the most efficient, tech driven valet parking set up I have ever seen and 6 different elevator towers—truly an indoor city that requires a map to navigate. 

On our Texas trek, we also traversed jump #2: Tumor Harvest (sounds so California farm to table! but translates to surgery).  I had surgery yesterday (Friday) morning to remove enough tumor mass from my quad muscle to “pass go”.  The surgery went well, I spent the day in the very spanky efficient MD Anderson surgery center where the moment I began to wake   anesthesia—I mean really, one eye barely fluttering, the view from it a blurry roomscape---they had me out of bed and walking down the hall with a walker and a bare Texas moon—not a pretty sight at all! No messin’ around here in Texas.  We were back in our hotel by eve and had a good night complete take out Texas bbq and a Shiner Bock.  And now, after whirlwind trip where we barely breathed any Texas air in daylight hours, we are sitting at the Houston airport ready to high tail it back to Cali.  Not very excited about the prospect of flying right now but looking forward to being home.

 Next on this crazy trail ride, jump #3: Growing TIL.  This is a 6-week laboratory process with a 50% success rate (if you need somewhere to throw some energy, this is a good spot----chant, pray, sing, wish on a star--- “grow TIL grow”).  If my TIL grows, it will be multiplied to millions of cells and then frozen so that it can be held until I need it. While MD Anderson is working to get my TIL to grow, I am going to start on a combination of treatments at CPMC based on my genetics and immunotherapy agents.  If these treatments work, I will stay on them as long as possible (another place to throw some healing energy).  If they do not work In the next couple of months, and the TIL grows, providing I still meet the criteria to continue on TIL treatment: strong physically and no brain mets (another place you are welcome to invoke any and all powers you have!---clear brain!!),I will go ahead with jump # 4: TIL treatment. While this treatment is grueling, it does hold the potential for durable remission and kicking this cancer’s ass out of town.

Needless to say, this return to the saddle has hit us all hard. Thankfully David has been able to take a bit of time off work (thank you Suzanne & Chambers crew) -- this has allowed us to hatch a plan, get our feet under us and quickly move forward. He has been incredible ---a true rodeo champ, theme given, and I am so grateful to have such an amazing partner in this. As always, Calem and Emilia are the hardest part of this for me---being the cause of the angst and fear they hold and not being able to make it go away is torturous. But, we are taking it one step at a time, building strong support systems for them and laughing as much as we can together as we go (making fun of mom is not off the table and generally leads to serious belly laughs)—good stuff.  I can only imagine what coming home with a walker and compression tights will translate too. Eee gads! So, all said, saddle sores aside, we are doing well. We all have full plates, lots to do right now, and intend to do everything we can to keep it “normal” and keep doing those things.  The rhythm and purpose is important to all of us.  

We continue to be blessed by the most incredible medical team, who are willing to reply immediately, and help open doors to keep the pace. This is a true gift. While the next couple of weeks will surely be bumpy with new treatments to navigate, one day at a time, we will head through it. We will be back in Napa tonight and will begin the process of figuring out what we need to keep it all rolling. My driving is a bit limited so rides home from school/practices will certainly be helpful and I am sure more items will pop up, so stay tuned. My apologies that we have been slow to get the word out but this has been a very sudden, unexpected situation that has taken every moment of our time and energy to get headed quickly in the right direction. Giant thanks to Grandma M. for dropping it all and heading up to Napa to helm Camp Kaywoodie while we hit the road.  And much gratitude to those-of you that have jumped in to hold us up in recent days—we love you and are so grateful to have you in our lives. 

Saddled up, spurs on, here we go---planning to hog tie this beast and ride on!


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Comments

18 Comments

Laura Cavataio
By Gini Reed
Hi Kari

I am a old, old friend of Nancy Johnson's and she passed along this site to me. I am in Houston and work at MD Anderson -- Would be happy to meet up with y'all next time you are in town whether for a coffee between appointments, need a restaurant recommendation, or if you want to get out of the med center for a bit.

Anything at all I can do for you, please let me know, would love to be able to help. glreed@mdanderson.org
samantha, scott, wil, charlie and santos lloyd
By
Sorry I've been slow in reading your update. Scott and I were off in a remote location near Puerta Vallarta for a few days of much needed R&R. I am so glad to hear you are under the best of care with MD Anderson. I had many chats with Dr. Bob Bast last year and he was so knowledgeable and helpful through all of my 'stuff'. You are so amazing, strong and powerful source of inspiration to us all. We love you and think of you often. And I agree - you got this!
Mary Vickers
By Mary Vickers
Hi Kari , Dave, Calem and Emmy,
As always, I am sending you all lots of positive energy! I am hopeful this is the remedy to get you back to 100% well !!! Much love, Mary
Jeni Olsen
By Jeni Olsen
You got this, again! Sending you so much love and healing vibes, Kari and Family. xoxoxoxo
kris seversen-asgian
By Kris Asgian
Kari- you can count on the Asgians to be praying that all of your doctors will be on their best game, that they'll be clear-minded, discerning, and will catch any stone that needs to be turned. We'll be praying for Calem and Emilia, that they will be able to sleep, maintain their everyday activities and friendships that sustain them. And we'll be praying that you and David will continue to be the huge support you are to each other. What a gift you both have in your love and friendship through the good health and "saddle sores". It's amazing to see how God has sustained all of you through the years and how he has blessed you with such a treasure of friends who will do anything for you. Thanks for your update…we love you! Kris
Seana Wagner
By Seana Wagner
The Wagners are sending lots of good juju to the whole Kaywoodie Crew!
Laurie Black
By Laurie Black
Dearest Kari - Wow. Great to hear from you my sweet Kari. Bob did TIL at the NIH...and while his cells did not grow...everyone else I know their cells did grow and they are still kicking and dancing. Sending you strength, love, courage and so much hope. Hugs, Laurie
Sarah Johnston
By Sarah, Tom and Quinn
WOW...Kari - thank you for taking the time to not only fill us all in, but to give us a science and medical lesson at the same time. I know you wish you didn't have to learn all this stuff, that it was just something in a Time Magazine article on the advances in medicine, but if anyone can tackle this and know what the "bleep" is actually going on, it's you! Stay the course and don't let your horse get too road weary. Hugs from FLA!
Maura Sparks
By Maura, Sam and Max
This sentence you wrote is what I will envision: "remission and kicking this cancer’s ass".It sounds more attainable then ever with your team, advancements in medicine and your tenacity. We will keep those prayers coming loud and strong to make sure this happens. Count the Sparks family in for rides afterschool or activities for the kids. Continued love to the awesome Camp Kaywoodie team!
robin lail
By
Dear Kari,
You are beyond amazing! Your news took my breath away, and then came the plan which took my breath away again! It's not your first battle, but this is war! I see you mentally like a fierce gladiator who has won many impossible battles already and is now a seasoned warrior. We are all out here! Chanting,
praying, sending vibes, conjuring winning visions, and cheering for your incredible spirit and determination. Big love to you and David and Kalem and Emilia, Robin Lail
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