Cheryl Stratos

I am winning my fight with PLX4032! A strong spirit and positive attitude will take you a long way. BELIEVE! This can be beat.

On November 23, 2009, I was a 45 year old mother of a 13 year old, and I was diagnosed with Stage 4 Metastatic Melanoma Cancer. The cancer is in my lung, liver and in lymph nodes of both of those organs. My doctors have never determined where the “primary” is located (where the cancer started), though they do know it did not appear as a typical skin irritation or mole.  In fact, my doctors believe the primary was likely in my lung. The diagnosis did not come easily or quickly.

Symptoms that caused me to seek out answers were neurological, and the initial suspicion was that I had Multiple Sclerosis. A CT scan of my brain showed only superficial lesions, and that scan led to a CT scan of my spine.  Though this scan revealed no lesions, it did reveal something suspicious in my lung. My doctor immediately sent me to get a PET scan that confirmed I had cancer not only in my lung, but also in the liver and in lymph nodes of the lung and liver.  After 10 agonizing days the final pathology determined it was metastatic melanoma cancer.

The prognosis not good. 

Melanoma protocols have stalled for nearly 15 years, with no progress towards extending life expectancy for Melanoma Stage 4 patients.  Clearly, the odds were not with standard protocols so my only remaining option was to go into a clinical trial.

Getting into a clinical trial and getting treated was not easy. I started at Georgetown University Hospital, but they did not have a focus on melanoma. I met my first melanoma specialist at Memorial Sloan Kettering in New York, but timing issues left me without an option in the clinical trial I wanted to enter.  My doctor at MSK suggested Vanderbilt, but that didn’t work out, either. I then tried Texas Oncology, The Angeles Clinic and UCLA. It took me from November 23 to until February 28 before I started treatment at UCLA with PLX4032. I’ve been in this clinical trial for 15 months.

PLX4032 has not only stopped my cancer from growing, but it’s now only a fraction of its original (baseline) size. My recent PET/CT, April 7 2011, showed the melanoma was not progressing, nothing lit up on the PET. I’m hoping that PLX4032 is the magic pill that makes my melanoma go away. I have had side effects – hair loss, skin rash, cysts everywhere, night sweats, nausea and diarrhea. But, all in all, not bad relative to what I could have happened.

During this odyssey I learned some interesting facts, but the most interesting is that, at this level of treatment, most doctors are not focused on the patient’s health, but on the study’s results. If you want to survive, you need to be your own advocate. There is no “Cancer for Dummies” users guide available. YOU are the one who needs to do the research, evaluate clinical trails and determine the right path for you and your disease. You need to be vigilant and research every angle. You need to network with friends, family and friends of friends.  You need to be computer savvy. 

I believe that the medical community is close to finding a solution to this disease. It is just a matter of time, and the goal is to hang in there until that cure comes along.

To find out more about my journey to fight melanoma cancer check out my caring bridge webpage: http://www.caringbridge.org/visit/cheryl_stratos/journal

Comments

StanN - (5/31/2011 - 8:42pm)

You have learned your lessons quickly, Thank you for sharing your great foresight and knowledge gained,Your words hold many truths for newcomers, and old hands  alke,Good luck to you and prayers and good thoughjts sent your way,

StanN 

ikeyd - (9/27/2011 - 12:22pm)

Congratulations on the course of your treatment and your determination in finding the best therapy. Your relation of your journey to reach a successful treatment is heart-warming and inspiring.  I have followed a similar path starting with my initial diagnosis in June 2003 to the same endpoint with the PLX4032/vemurafenib/zelboraf clinical trial at UCLA - for me the treatment timeline is 20 months and still going.

Your words of advice for self-advocacy and study are true and clearly have resulted in the ongoing successful battle against melanoma.  However, while I have the greatest respect for your courage in facing down this disease, I disagree with you on your conclusion that "at this level of treatment, most doctors are not focused on the patient’s health, but on the study’s results."  My experience has led me to a far different conclusion - For me the researchers at this level, at MD Anderson, at the Moores Cancer Center at UCSD, and primarily at UCLA, have shown a remarkable concern for me as an individual who needs to be healed, not as patient number 20 in Cohort 3 of Arm 1 of a given trial.

Thank you very much for sharing your experience and your uplifting story of your battle against melanoma.  I pray your success continues.

concernedaughter2011 - (10/3/2011 - 5:42pm)

Thank you for sharing. That is wonderful news about your most recent scan! Thank you for sharing your stories & lessons learned. 

"Trust in the LORD with all your heart and lean not on your own understanding." ~ Proverbs 3:5

soccercheerbasemom - (11/15/2011 - 1:09pm)

Hello, My name is soccercheerbasemom I am married to my soulmate and father of my 3 children.  He has been fighting stage 4 melanomia and has survived since being diagnosed in January 2010. He has had radiation and almost a year of kemo. He was given 6months 9months ago. He is very ill and was put on a new drug called Zelberof I am tring to find someone, anyone, who has tried this drug or knows of anyone on or has taken this drug. I have done all the research on the drug but need to find someone who can tell if its worked or what side effects they have had. He is a very strong christian man who has faught so hard to stay with us but is getting weaker and sicker on this drug.  We were told it was a pill form of kemo and could have side effects just as kemo has and he has and still is experiencing these side effects. He has been on this drug for only a month and has been hospitalized already after ridding in the car for 20 minutes to pickup my son at school with me and had to have the skin on his hands up to his elbows removed after this car ride(supposidly) because the sun thru the window burned his skin so bad it gave him 2nd degree burns and blisters. I research this drug intensively but I am trying to find someone who is taking this drug to see what they have experienced. I am also very curious about this drug you are on. Thank you very much and god bless you and your family in this horrible fight we are in.

Have you prayed as much as you have talked about it?!!

kattyp - (6/19/2013 - 5:34am)

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