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What an amazing time we are living in…
We are seeing new protocols increase melanoma five-year survival rates to nearly 98%! It is remarkable when you consider in 2009 survival rates were just 4%. I remember getting all excited in 2011 when we saw survival rates bump up to 10%. Life has come full circle for me in this short time. This year I found myself back at UCLA meeting with Dr. Ribas’s research fellows as a patient advocate and MRF board member. I sat in a room of doctors who worked on the idea of PLX4032. They could not believe there was a survivor from that study that started this new line of treatment options less than 10 years ago.
This year has been a busy year for the Stratos family when it comes to melanoma. Mike has continued to study and track what is going on in clinical research all over the world on our fightingmelanoma page. Sunshine Sergei continues to get checked and has had two stage I melanomas removed and is learning to stay out of the sun. Unfortunately, your skin is like an elephant - it never forgets. Sometimes mama does know best. Our dear friend Jim Flanders was diagnosed with stage III melanoma and got Mike and me back in the fight. This time we knew where to go and who to talk to. Our mission was accomplished and in 10 months Jim is showing no evidence of disease.
We just finished working on a very successful DC Wings of Hope event that raised over $400,000 that will go directly to outreach and the local hospice care center. I was thrilled to be supported by my dear friends and family at this event. We honored doctor Dr. Venna of the Schar Cancer Institute who is leading the way in early detection practices and treatment options for melanoma. We also saw we still have a way to go until we can help everyone with this disease.
For #GivingTuesday I would like you to take 11 minutes to watch this video and get to know some of the faces of melanoma. Jennifer lost her battle at 28, and Melanie at 16 is still in treatment and is still looking for her magic pink pill.
If melanoma has affected, you or someone you love please make a donation to the MRF on #GIVINGTUESDAY!
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To promote melanoma awareness month I want to thank Coolibar for your generous support of our Foundation and providing shirts for #milesformelanoma. You are making a difference in my world and helping our community stand up to #melanomacancer. I am proud to protect my skin from the sun and stay fashionable with Coolibar! #melanomaawarenessmonth
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May Marks Melanoma Awareness Month
Wow…..it has been a while since I posted to this site! We have been focusing on updating the daily Fighting Melanoma Facebook Page and Twitter Accounts to share updates involving research, patient stories and trial options.
As Melanoma Awareness Month begins, I have to pinch myself as I attend events and speak on behalf of the Melanoma Research Foundation. First, to make sure I realize why I am still here, and second, the very fact that I am still here – LOL!
I know melanoma and skin cancer is personal for everyone. Specially, for us in the “Over the Hill” gang that “baked” a bit too much in the sun during our youth and visited tanning beds to achieve that all too-important “base tan”.
You know, the one that was supposed to save us from that horrible sunburn!
Were we morons or what?
We are now seeing the side effects of those actions.
Melanoma is the fastest growing cancer in males over 50 and young adults (our kids). Try as we might, they just don’t always listen…..
People are still “dying” for that warm glow.
My son, Sergei, has had 2 stage I melanomas removed to date.
He’s 21 years old.
At least his parents have a degree in Fighting Melanoma!
I tell Sergei your skin is like an elephant - it never forgets! His reply is, “I know, mom!”, as he goes off to have fun in the sun. At least he’s good at wearing his SPF now.
I recently found myself back in the patient advocate game - my dear friends, Jim and Kim Flanders, who helped us so much through our ordeal now find themselves face to face with the beast. For those of you who don’t know, Kim and I have been friends since she was five years old. And yes, it involved horses.
Jim was just diagnosed with Stage III melanoma cancer (yes, he is in the targeted age). I found out that our connections and education of melanoma mattered. As we guided them through the maze, we found that the doctors we met along the way care and remember my story. Jim is so fortunate that during this time there are a variety of treatment options that will help them breathe a bit easier. For those of you who are interested, our Jimmy will be doing the same treatment as President Jimmy Carter…..Anti-Pd1 drug we now know as KEYTRUDA®.
I find this a good omen.
Have you seen the commercials for Keytruda?
Also, did you see our MRF Jimmy Carter Video?
Check it out at
Regardless, CANCER SUCKS.
The side effects of the treatment are still real.
Sorry Jimmy, but we’ll be there with you along the way
When we started talking about PLX 4032 we didn’t know how much this drug would change the landscape and move us to what is now more than a dozen new treatment options.
Crazy, huh?
It is amazing to find out five-year survival rates for Stage IV patients have jumped to almost 70%.
IT WAS 4% ONLY 9 YEARS AGO!!!!
Incredible advancements have been made in such a relatively short time.
Let’s use May to stand up to melanoma cancer and pioneer change.
Get a regular skin check, wear your Cooolibar sun protective clothing, slather on your SPF, sport a wide brim hat and sunglasses. It’s all cool and can save you time in the future from visiting a bunch of doctor’s offices!
Come to The Yard for a free Skin Check on Saturday at 7:30 am! We would love to see you and have you walk with Team Fighting Melanoma to celebrate our 7th fundraiser for the MRF!
DC Miles for Melanoma link http://join.melanoma.org/site/TR/5kRunWalk/MilesforMelanoma?team_id=4332&pg=team&fr_id=1482
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2016 A Year in Review!
I am excited to say I am still NED (No Evidence of Disease) and I have stopped all treatments.
I was also told I can wait a year until my next CT Scan.
Hallelujah!
I can finally stop glowing from all that radiation. Mike the watch dog is not too keen on stretching out the CT Scans to a year, but, hey, I’m done with the cancer!
FINISHED!
NO MORE!
THE END!
It has been seven years -- kind of amazing as I reflect on our journey and the experience. What did I learn from this experience? That what goes around comes around in life.
Remember my first doctor from MSK? You know, the one who told me to go home and enjoy the holiday’s because it would probably be my last Christmas. You remember that guy from one of my first posts.
Well, I saw him in NY this October at the MRF’s 25th Anniversary Wings of Hope Celebration. I thought to myself I am not only alive, asshole, but I’m now on the Board of Directors for the Melanoma Research Foundation.
He did not see that one coming – LOL!
If this was a screenplay, I would have ended the story at that moment.
I have now gone full circle…..remember, the world is so much smaller than we think.
It is fun to see these doctors who were so negative respond in amazement. I hope in the coming years they’ll encourage patients to try and understand that in the darkest of situations there is always a light.
Pass that one forward.
That night did play out brilliantly. We honored Jimmy Carter, the new spokesman for MRF, and raised $1 million for research.
Diane Ashby, you would have been proud. Diane founded MRF in 1996. Diane was a melanoma patient who grew increasingly frustrated with the lack of effective medical treatments and started a solution. She passed away just 8 months after founding the MRF. But we continue to carry her torch.
From 2009 – 2015 we saw a series of new drugs come to market and in 2016 we moved to the one / two punch series. This is taking these new drugs such as; IMLYGIC; INTRON A; KEYTRUDA; OPDIVO; YERVOY; PROLEUKIN; IL-2 ; SYLATRON and combining them to see if they can kill the monster under rapid fire. This is not for sissies because these side effects are unknown and are the next exploration in treatment options to come. Enter with caution but this is the new frontier in drug discovery.
I am so fortunate that cancer research has allowed me to see my son grow into this amazing young man who is now in college at the University of Alabama. Mike and I got to take Sergei to Greece this summer with our dear friends Kim and Jim, who watched Sergei during most of our time at UCLA. We are so blessed to be where we are today because of cancer research. Mike and I will continue to educate, advocate and raise money for melanoma research.
In November, I also became one of the few private citizens, other than the less than 1% of all Navy military, to land on the flight deck of an aircraft carrier. It was “off the tail-hook” cool -- the carrier survived and no one was hurt during my 24 hours aboard the ship. Taking off by catapult from the flight deck was even more of a rush. I was selected as a distinguished guest of the USS George Washington, a Nimitz Class aircraft carrier. I received my Tail Hook patch and a certificate. Pretty amazing experience.
If you’re considering this as a bucket list item, do it before 2018 – they will be transitioning from the C-2 Grayhound aircraft to a helicopter to transport guests on and off the ship.
Yep, I am one lucky girl, and I know it!
In 2017 I will begin telling my story to the construction industry in hopes of inspiring and educating contractors out in the field to use sun protection.
The most important lesson I have learned from my experience is in times of crisis, keep looking forward, be creative, and you will find a way!
A special Thank You to my mom, dad, mama Katie my brother Victor and the rest of my family and friends who stood by us along the way you know it was not an easy journey.
Happy New Year!
Don’t forget to make it a great day on purpose,
Cheryl
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Mike and I are so excited that the MRF will be honoring President Jimmy Carter with a Courage Award at our 20thAnniversary Wings of Hope for Melanoma gala on October 20, 2016 in New York.
If you are interested in joining me and Mike at this event October 20th in New York City here is the link for tickets - https://melanoma.ejoinme.org/WingsNY16
Although President Carter has a conflict on that date and won’t be able to attend in person, he is going to film a short video for us that will be shown at the event and used for other marketing/fundraising purposes for the MRF.
I wanted to share a few things, first the background of how we were able to connect with President Carter. Over the summer, Sara Selig, MD introduced Kyleigh LiPira, Director of Individual Giving at MRF to Robin Legg, a donor who lost her vibrant 25 year old daughter, Meredith Legg Stapleton to ocular melanoma. Meredith was an advocate during her treatment. You can see her story here on “Dear 16 year-old-me”
. She is the 22 year-old.Robin is probably one of the most passionate people I have met. She is determined to not have her daughter’s death be the end of her story and wants to get out the message of prevention for not only ocular melanoma but cutaneous as well.
Meredith was married to a relative of Jimmy Carter and Robin truly believed that if we could just get a letter to him that maybe he would consider doing something for us. Kyleigh and Robin came up with the idea of honoring President Carter with a Courage Award at our anniversary gala. Together, they wrote the letter and Robin was able to get it to President Carter’s secretary. After weeks of calls following up on our letter we finally heard back last week that President Carter would accept the award and welcome us to the Carter Center to film on 10/12! This is a hug win for the MRF.
On 10/12 MRF will live stream parts of the interview through the MRF social media channels and then send out video clips via e-blast to MRF constituents. In November, we will use video clips again to help drive donations for #GivingTuesday.
We are really excited about having President Jimmy Carter as our advocate and it is truly a win for the MRF and the community we serve.
I hope to see you in NY,
Cheryl