My Story - Fighting Melanoma

Happy New Year!

Happy Days! 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

President Jimmy Carter to receive a Courage Award at our 20th Anniversary Wings of Hope for Melanoma gala on October 20, 2016 in New York.

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

Cool Facts

I am amazed at the changing landscape over the past seven years when it comes to melanoma treatment options. I am happy to report I am still NED after going off the Braf/MEK combo. I am working to help fund future research project and skin cancer awareness. Next month I will start working on a skin cancer program targeted to the construction industry.

Cool facts:

Three new medicines have been endorsed for routine use on the NHS giving patients new options for skin cancer, chronic myeloid leukaemia, and anticoagulant reversal.

Nivolumab plus ipilimumab, in contrast with ipilimumab alone, may improve overall survival of patients with previously untreated, advanced melanoma, according to a study published in The Lancet Oncology.

Researchers have found that removing a particular enzyme and protein from the immune system significantly reduces the spread of breast cancer and melanoma.

Candidates for this procedure must have good liver function and not many tumors. If ocular melanoma is localized to the eye, prognosis is good, but 50 percent of ocular melanoma cancers spread.

Be extra careful if you've got body art...

Researchers have established its ability to provide potent anti-inflammatory properties, which inhibit cyclooxygenase enzymes in the same way as NSAID ibuprofen.

I am excited to be living at time when research and discovery are on the forefront for melanoma cancer. Remember to research, read and ask questions. An educated patient lives longer

It's Truly a Happy New Year

It’s truly a Happy New Year!

My band of “Guardian Angels” came through for me on January 2.  Back in November, my PET Scan lit up – not a good thing. 

That hasn’t happened in 5 years….

Needless to say, this created some excitement in the Stratos household.  As always, the timing was perfect!  Just before Christmas….

Déjà vu!.

My body seems to like surprising me this time of year. It must be confused about what is the meaning of a “present”.  J   I knew that some of the “growths” where fibroids, but there was “draw” by those fibroids (they were eating the glucose they inject in the area, and that typically means cancer).  Anyway, the decision was made for me - it was time for this “lady junk” to come out.

Hasta la vista, baby!

What the hell – I’m done with that junk, anyway and at this point in my life I do not need to carry any access baggage.  

And that stuff had to weigh something, right? 

Instant weight loss!  Who doesn’t like that?

My surgeon, Dr. Boice, said my fibroids were so big that it was highly unlikely he could do the surgery laparoscopically. The biggest bad boy was 12 centimeters.  

But he did!

The fibroids were embedded into the uterus, so they just yanked the sucker outta there all at once.

Like a tooth that needs pull’in.  YANK!

Yeah. They’re conducting a biopsy on all the tissues, but the early news is that the last growths on my liver were cysts.

Thank God!

That’s been at the back of my mind for some time. After surgery I popped up with a smile and they looked at me like I was an alien. They said most people don't come out as alert as I did.

That’s my super DNA at work, baby! 

I came out of surgery and asked, “where’s the party?”  I felt so damn good after the surgery they actually said they’d release me immediately if they could. Originally, they told me I would be in the hospital 3-5 days…..

No way!  I have to thank my amazing husband, Mike, for being so positive and proactive, my “Mama” Katie, Brother Victor and my dear, dear friends Artemis and Atossa for waiting with Mike and keeping him from losing his mind!

My positive son Sergei was hanging in there with a smile, my wonderful Southdown pals were great - they organized meals for me and the family (went so far as to make stuff Gluten Free!) and my gal-pal, Judy, for giving Yildren some extra love.   And last but not least, my Mom and Dad for their continued love and support.   As I sat at the cancer center I realized just how far I have come, and how blessed I am, to have such wonderful friends and family….

And some super charged DNA (thanks for that, too, Mom and Dad!)!

What a great beginning to 2016.

Happy New Year!

                                              

It’s a miracle and a medical wonder….

My purpose for 2016 is to help the MRF (Melanoma Research Foundation) move closer to a cure, to change melanoma from a death sentence to a chronic disease by funding more research.  

Before my surgery I attended a medical conference that was focusing on the different pathways that effect melanoma, and ultimately, other cancers.  There are 46 pathways currently in process, and hundreds more to study, but researchers think they are close to cracking the code!  They’re figuring out how JAK and EGGK can kill melanoma that has become BRAF resistant. We don't know a lot about JAK (…..we don’t know jack about JAK J) but it could be a game changer.

They’re even studying folks like me - Super Responders – to figure out why this crap works on us and not on others.  I believe I’ve been saved for a purpose – maybe they can run isolated trails for some additional variables on me – I willing….

Maybe I’ve been saved for a purpose.  Who knows – maybe that’s true….

It is time to try being an astronaut!  Discover new frontiers! I want to boldly go where no man has been before! 

I want to work towards helping us all become Super Responders.!

Happy 4th of July - I am Drug FREE

HAPPY 4th OF JULY!!!

 

Update on me....

 

I am officially Drug Free!

As most of you know, I'm now 5 1/2 years into Targeted Therapy, first just the BRAF inhibitor, and then both the BRAF and MEK inhibitor. 5 & 1/2 years.....Recently I've been having eye problems. The diagnosis is Uveitiis. According to the docs, fewer than 2% get this, so I guess that makes me one of the lucky ones! 

Anyway, it appears that the Targeted Therapy drugs are causing this, and its taking a terrible toll on my vision. My choices are simple - chance losing my vision in that eye all together or go off of Targeted Therapy drugs. I made my decision - I'm going to go off my drugs......

I had a PET scan this week and I'm still clear of active cancer, so that makes my choice easier. And I'm looking forward to dropping my "vampire" status (stay out of the sun due to sun sensitivity), too!

I'll keep you apprised of my progress with regards to both the melanoma and the eye issues. Remember - if the melanoma comes back, I can always go back on the drugs. I just have to be more vigilant going forward...

I hope you all enjoy this beautiful summer! And don't worry - I'll still keep you up to date with new developments on whats going on in the fun filled world of melanoma!

 

It is that time of year again when there is a lot of fun in the sun happening.  

 

Remember when you are getting ready to run out to the beach to catch that wave or dive in to the pool or just plan hang outside. SPF and lots of it -- don't be like me and strive for that warm tropic glow. It is just not worth it. Over worshipping of the sun landed me years of treatment and $100,000's in medial bills. 

Be smart and think about it / me. If I can save one life it will all be worth it.  

Prevention Tips:

  • Have a yearly skin exam (no matter your age).
  • Wear any sunscreen SPF 30 broad spectrum coverage or better.
  • Wear hats.
  • Wear Sun Protective clothing.
  • Wear sun glasses.
  • Schedule outdoor activities when the sun is low in the sky.
  • Seek shade when possible (10 a.m. and 4 p.m high sun).
  • Don’t burn. One blistering sunburn doubles your chances of developing melanoma later in life.
  • Avoid intentional tanning and indoor tanning beds.
  • Get plenty of Vitamin D.  You don’t need the sun for this. 

Insurance Commentary....

I'd like to know how many of you are having trouble with your insurance company paying for your treatments and/or medications. I have what we call here in the United States a "Cadillac" insurance policy by Blue Cross / Blue Shield. For the first 4 years of my illness (stage IV melanoma) I was treated with a Targeted Therapy via a clinical trial. That means that BC/BS didn't have to pay for my medications. During that time my drugs became FDA approved and finally, 1.5 years ago, I dropped out of the trial and have received the medications by prescription, with the insurance company footing the majority of the bill.

Now BC/BS wants me off my drugs. My scans indicate that my cancer has shrunk and don't seem active any longer (hooray!), but all the data shows a strong likelihood that if you go off of a Targeted Therapy the cancer reappears. I see it as ridiculous to go off my medication - is their desire to save money at my life's expense? 

I have an attorney I'll sic on these guys if they persist. Anyone out there having similar problems?

 

Team Fighting Melanoma

Celibrating National Melanoma Awareness Month!

This May my friends joined me in the fight to stop melanaoma. The dollars raised went to develop melanoma research.  I want to thank each and every one of you for helping me stand-up to melanoma. Our race raised nearly $100,000.  And I have to say with a little help from my friends (especially my husband Mike) I was the top fundraisers for this years DC Miles for Melanoma and Team Fighting Melanoma came in third for team fundraising efforts. My son Sergei continues his winning strick finishing first again for his age group and coming in 7th out of 600 runners. Pretty impresive if I do say so myself. We  also sported the MRF GetNaked# campaign shirts to raise awareness of the importance for annual skin screening.

This year we have had many things to celebrate and most of all the Surgeon General took notice and recognize the impact that melanoma has on America.

Skin cancer has increased 200 % since 1973 with the dawn of the tanning beds and the hope of acquiring a healthy glow.  

There is a 1 in 50 lifetime risk of developing melanoma; nearly 77,000 Americans are expected to be diagnosed with melanoma in 2014, resulting in almost 10,000 deaths costing the US health care system an estimated 8.1 billion.

It is going to take a village to stand up on this issue and make a difference this Surgeon General’s Call to Action is the first step but it will take help from you, state and local grass roots ef
forts, and organization such as the Melanoma Research Foundation to get the job done.

Mike, I and Sergei want to thank our village for coming together to bet this once and for all. 

 

Success!!

A message from my wonderful husband who worked so hard to keep me around:

---- 5 years and 3 months ago we got bad news - Cheryl had Stage IV melanoma cancer. The doctor said she had 6 - 8 months left, to get her affairs in order. No quitters, she decided to roll the dice on a Stage I Clinical Trial that showed some impressive numbers. 

We flew to UCLA, the only place offering the Clinical Trial, andshe enrolled. Every month we flew to LA to continue her treatments. After 4 years she added another drug, making her regimen a cocktail, and she decided to go to LA less frequently and relying on a local specialist. 

Today is 5 years after she started that clinical trial. Cheryl had a PET Scan last week, and today we found out that it was clean. No sign of cancer. 

Not bad for someone who was told she had 6 - 8 months left to live....

Her doctors are trying to figure out how come this experimental drug worked so well for her. 

You go, Cheryl Syman Stratos! You're a rock star, and I love you! 

Congratulations!

Love ~ Mike

 

Happy New Year, Everyone!

It’s 2015, and its a “new dawn” for all things to come!

I want you all to know I’m thankful for so many things…..

  • Having another healthy year, filled with new adventures….
  • My husband, Mike, and my son, Sergei always by my side – they make me laugh out loud…..
  • My amazing horse, Yildren. He turns 27 this year and is my ultimate conductor of Zen…
  • Our pup, Zoe, who is so full of life that she’s become my athletic trainer for making me walk every morning whether I feel like it or not…..
  • That business is going well, and I work with terrific people….
  • That I don’t have to go to California every month…..Don’t get me wrong – I love California, but home is where the heart is! And I can always visit California. But on my terms….
  • And for each of you, my friends and family – you’ve been my rock!

You know, I’ve really grown to appreciate just “being”.

For all that I am extremely thankful!

Another thing I’m thankful for is it was another great year for the advancement of melanoma research. When I say great, I really mean it, and that's so important to me and others afflicted with this terrible cancer.

Matter of fact, we just landed another new melanoma drug two weeks ago – not bad an illness that saw zero advancement for more than 15 years up until 4 years ago.

On December 22nd, the FDA approved this new drug called Opdivo (aka nivolumab), and this one is really cool. Its got a very cool generic “scientific” description – the doctors call Anti PD-1. The “PD” stands for “Programmed Death”…..

Sounds bad assed, huh? What a great name…some scientist with a demented sense of humor thought this one up.

I think this makes five new drugs in four years….

AMAZING!

This new approval is a promising and opens up an important new avenue for combination therapies. Just like the combo therapy I’m on – it's a combinations of 2 drugs, called “inhibitors”. They seek out the mutation that is the lynchpin for the cancer and they “inhibit” it. Sort of like throwing a blanket on it and confusing it so it can’t work. And that allows your immune system to kick the cancer in the butt! You may recall that I’m on a BRAF and MEK (Dabrafenib/Trametinib) inhibitors.

And the good news is that my “combo cocktail” is doing its job….

And I’m still W-I-N-N-I-N-G.

And loving it!

Merck also has it’s own PD-1 treatment Keytruda (pembrolizumab), and it was approved just this past September. Seems every one of the pharma companies are coming into the arena with their own version of an anti PD-1 drug.

Mike’s trying to figure out who is going to be the big winner and buy their stock.

Mike’s a multi-tasker.

J

It seems these days there’s a lot to consider. This is completely different from my first Caring Bridge installment. There weren’t many options to keep the blue side up.

Just saying…

The exciting thing is that it seems that doctors are zeroing in on cancer. The two big strategies are combining drugs that either enhances your immune system to fight cancer or confusing critical mutations that make cancer grow so your immune system can zap the cancer.

Guys, we’re living in a new “golden age” for medical enlightenment!

Amazing things are happening – a diagnosis of cancer only a couple of years ago was a certified death sentence.

And its not just melanoma cancer – its happening in cancer of the breast, lungs…..

EVERYWHERE!

This is awesome for each and every one of us!

Heck, I thought I was a gone-er!

“You’ve got 6 to 8 months left….better start making plans….”

Man, that sucked!

But look at me know – five stink’in years after diagnosis and I’m still on the planet.

Go figure…..

W-I-N-N-I-N-G!

Seeing a cure in my lifetime isn’t out of the question!

YEAH!!

With the approval of anti PD-1 drugs, and the advancement of combination therapies, we’re witnessing serious progress. These advancements are a critical step forward, but we now need to make sure patients who need and deserve a treatment receive it.

Unfortunately, a lot of these drugs aren’t accessible or understood by the typical oncologist. Or if you live in New Zealand or Australia, you may never get it. Their health services don’t cover many of the new treatment options.

Why?

Because, at $120,000 a year or more, not many programs can afford it.

You can always try to plead your case to the pharma company - they may have a program to help you out.

But they can only help so much….

That’s heavy stuff, huh?

We as a society need to figure a way to help everyone, not just those who can afford it. We can’t take away the pharma company’s incentives to discover these drugs, but we’ve got to find a better way of getting the drugs into the hands of people who need them.

Just something to think about in 2015.

I know we can work this out – I really do!

Anyway, lets end this on a happy note. It may be cold outside, but, hey – its winter, right? And spring and summer are right around the corner. Use each one of these days to celebrate life – its really a precious thing. Next time you see someone you care about, let them know. Why? Because life is a gift, and we should be grateful for all of our family and friends.

Happy New Year, everyone!

Cheers,

Cheryl

HAPPY THANKSGIVING!

Five years ago today I was diagnosed with Stage IV Melanoma cancer and given 6 months to live. I am thankful for every day I have been given, an amazing husband, Michael Stratos who would not give up, his positive energy kept me alive to fight another day, my supportive family and friends who hung in there with me through all the stress and I can not forget all those amazing doctors who are working hard to discover a cure. We continue to discover each day where this journey we call life is taking us but let's not forget in the end it's the ride that counts. What a wonderful ride I am having. You can't ask for any more than that out of life.

 

Happy Thanksgiving!

FDA approved Merck’s anti-PD1

Yesterday the FDA approved Merck’s anti-PD1 drug for use in metastatic melanoma. This drug has the best response rate of any drug approved for melanoma, and everyone expects big changes because of this approval. Keytruda is only approved for patients who have progressed on ipi and, if applicable, on a BRAF inhibitor. I am quite sure it will be widely prescribed off label beyond those parameters. The drug is given by infusion every 3 weeks, at a cost of $12,500/month. The median response time in the data used for this approval is 6.2 months, though many responded much longer.

 

Surgeon General Takes Notice of Skin Cancer Risk

YEA TEAM!

I am very excited to see the Nations Doctor (Surgeon General) stand up and take notice on a familiar skin-cancer prevention message and recognize the impact that it is having on America.

Skin cancer has increased 200 % since 1973 with the dawn of the tanning beds and the hope of acquiring a healthy glow.

There is a 1 in 50 lifetime risk of developing melanoma; nearly 77,000 Americans are expected to be diagnosed with melanoma in 2014, resulting in almost 10,000 deaths costing the US health care system an estimated 8.1 billion.

It is going to take a village to stand up on this issue and make a difference this Surgeon General’s Call to Action is the first step but it will take help from you, state and local grass roots efforts, and organization such as the Melanoma Research Foundation to get the job done.

Those of you tanning or burning your skin this summer should stop!

Seek the shade,

Wear a hat and some sunscreen and,

Whatever you do, stay out of INDOOR TANNING SALONS

Effective prevention of melanoma is two-fold: First, reduce and limit UV (ultraviolet) exposure both from natural sunlight and artificial (e.g., tanning beds) sources; Second, identify and diagnose melanoma as early as possible.

The majority of melanomas occur on the skin; in fact, melanoma is the most serious type of skin cancer. Melanoma can also occur in the eye (ocular, or uveal melanoma), in mucous membrane (suranes (mucosal melanoma), or even beneath fingernails or toenails. 

My melanoma appeared unknown to me as a dark patch on my chest, and went away. Than 20 years later SURPRISE -- September 2009 right after my 45th birthday I was not feeling well my body was numb and tingly. Fast-forward 4-weeks of test and appointments to my surprise, I was diagnosed with Stage IV melanoma; it was in my lungs, liver, lymph nodes and uterus.

The Stages of Melanoma - There are several stages ranging from Stage 0 meaning the melanoma can be removed with some surrounding tissue to Stage IV The cancer cells have spread to the lymph nodes, other organs in the body, or areas far from the original site of the tumor. This is called metastatic melanoma.

When I was diagnosed almost five years ago I was told to go home and enjoy the rest of my life. Maybe do nothing. But through research and having a husband that would not give up we were able to find a clinical trail on the west cost for a drug that was going to change they way we fight melanoma called PLX4032. This trail took me to UCLA every month for more than 36 months with the drug we now call Zelboraf. I have now been on the Tafinlar / Mekist combo therapy for 4 months and now showing no signs of disease.

YEA TEAM FIGHTING MELANOMA!

 

Melanoma is one cancer you can prevent. Yearly skin exams are a must with your dermatologist plus check yourself monthly also ask your significant other to check your backside and those hard to see spots. It can appear in your scalp, between your toes, toe nails, back, if you have a lot of mole you may want to photograph them to track their appearance.


Prevention Tips:

  • Wear any sunscreen SPF 30 broad spectrum coverage.
  • Wear hats
  • Sun Protective clothing
  • Sun glasses
  • Schedule outdoor activities when the sun is low in the sky.
  • Seek shade when possible (10 a.m. and 4 p.m high sun)
  • Do not burn. One blistering sunburn can double your chances of developing melanoma later in life.
  • Avoid intentional tanning and indoor tanning beds
  • Get plenty of vitamin D, you don’t need the sun for this.

Shade is Cool - Melanoma not so much.

No matter what you are fighting keep the faith of the possibilities to come.

Cheryl

Every Day Is A Winding Road, I get a little bit closer…

To feeling fine…

I am feeling fine…

I got to tell you, I’ve had a great run on my pink little pills - the BRAF Inhibitor I’ve been on. Nothing else. I saw no signs of progression from February 28th, 2010 to May 13, 2014.

Yes, my friends, a record of 4 years and three months.

Then…..they’ve found a little “something”….

I believe what they found was really nothing –

Probably just a hair I swallowed from clipping my horse the night before. I couldn’t sleep so I spent the night before my scans clipping my horse to keep my mind off things. My guy, Sergei, and my friend, Joanna, helped out. Nothing like hanging out at the barn covered in horsehair to keep your mind off things. That was Thursday, May 12th.

The next day was my CT Scan. A battery of tests starting at 8:30 am at Georgetown University Hospital. CT Scan at 1:00 pm.

Friday, May 13, 2014

Friday the 13th?

Then came the Results Show….

I’ve got to tell you, when Dr. Atkins, Dorothy and the social worker walked in without the usual entourage of student-doctor’s in-tow, I did pause and take notice.

I took a deep breath and relaxed my mind - my yoga instructor said this was what I should do if I thought I was going to be in a stressful situation.

I use this technique often. And I yell a lot.

That’s when I heard those fateful words - Dr. Atkins looked at me and said, “ummmmm….you’ve got new growth…”.

Huh?

Anyway, the new growth is very small – just 5 millimeters (by the way, you know how small that is really is? Really small. I have no idea why his delivery was so somber). Dr. Atkins reassured me that it was probably nothing, but, “we’ve got to keep on eye on this”.

We’ll know more when I do my next CT Scan in August…..

I’ve been demoted back to CT Scans every three months.

More radiation for me!  

Lucky me - I get to keep that glow!

My personnel opinion is they missed it previously, that its always been there.

Dr. Atkins just smiled and said that I was “a different kind of patient”.

I think that when your PET Scans start out looking like a Christmas tree, you can’t sweat the small stuff.

Literally.

By the end of the appointment the social worker asked me if I would talk to some of the patients looking for support from follow survivors. That’s what I’m about – rah rah!

This was actually my lucky day. I got a chance to tell Dr. Atkins that I wanted to add a MEK inhibitor to my drug regimen a “combo treatment”. I know he isn’t a fan of my drug treatment strategy, but he expressed little or no reaction.

That was very cool.  

You see, my two amazing doctors, Drs. Ribas and Atkins, have two very different views on treatment strategies. To Dr. Atkins credit, there was a recent report that adding the Mekinist to Dabrafenib changes the durability just marginally, by 10%, and that maybe the possible side effects aren’t worth adding the combo. But my main man, Dr. Ribas, feels a bit differently on the subject. And I’m going to ride the horse I rode in on – Dr. Ribas is a believer that the combo is better. I think a 10% improvement is worth the roll of the dice – remember, I started with a 14% probability of staying alive 12 months.

Every little bit helps!

Never fear, though, the MEK KILLER is here!

Anyway, I’ve started taking Mekinist in combination with my BRAF inhibitor.

Killer MEK!

I’ve added the MEK drug now for 34 days and have had no real new side effects.

YEAH!

But now I have to regularly monitor my heart and eyes. For the most part, though, they are reporting that adding the MEK actually reduces side effects.

I’m unfortunately back to a CT Scan every three months - that not only sucks from the time and additional radiation perspective, but I get they zap me but on the insurance side of things more regularly, too. Blue Cross / Blue Shield doesn’t like paying for those scans, and they cost $6,000 a shot.

Lucky for me its Mike who has to battle it out with the insurance company.

I got to tell you I had another one recently - they’re questioning my treatment because it has worked too long. BCBS doesn’t like to spend money. We have to fight to keep on the BRAF, and now we’re adding the double hitter of the MEK inhibitor and its costing another $20,000 a month.

This should make things a lot more interesting in the coming months.

CANCER SUCKS!

And its frigg’in expensive!

---------------------------------------

On another note, on May 27th I went to San Francisco for the Melanoma Research Foundation to attend a Board meeting and a fundraiser. I met a mother and daughter diagnosed with stage IV melanoma a day apart, and neither were sun worshippers.

Crazy.

Goes back to the thought that not all melanoma is caused by the sun, but sometimes maybe its genetics or a weakness in the immune system. They have been on the Combo for 2 years and they’re both doing very well.

I also learned about a couple of new cutting edge treatments on the horizon that are proving to have great response rates in their initial trails – they’re combo treatments of the immunotherapy strategy of attacking the disease called ipilimumab and anti PD-1.

That’s what’s trending…..

I've been wondering if all the things I've seeing were ever real, were ever really happening…

Ok that song was ringing in my mind tonight for some reason.

It’s Summer, and all those Cheryl Crow songs are playing in my head from summers gone by. But there will be no more soaking up the sun for this beach lover!

Cheryl Every Day Is A Winding Road, I get a little bit closer…

Go Team Fighting Melanoma!

Go Team Fighting Melanoma!

Thank you, all who donated, volunteered, and gave me the gift of your time to help make this the most successful Miles for Melanoma event of All Times. The race hit a fundraising record of $ 125,000. Blowing away the record for the most funds raised by a community Miles for Melanoma walk! We are so grateful for your effort and dedication. You are making a difference!

We had 5 first place winners on Team Fighting Melanoma! Congratulations Sergei, Zach, Leslie, Judy, and Jack for winning your respective age group and Atossa and Laura for making sure no one was left on the trail by coming in last.

Thanks again for your continued dedication and hard work! Keep an eye on our event calendar for the 3rd Annual Miles for Melanoma DC in 2015 and other upcoming events in the DC area.

Remember Get Naked, it may save your life. Click the image to learn more.

Love you all!!!

Congratulations for a job well done. Enjoy some team photo's

C-Drive

 

 The Race BeginsRecord Crowd Sergei and meTeam

Join Team Fighting Melanoma for the Second Annual Miles for Melanoma DC

What a year we have had for melanoma research and new drug developments!

Lets celebrate this amazing accomplishment by walking together at the Second Annual DC Miles For Melanoma Event.

WHEN:  Saturday, April 26, 2014 Check-in and Registration begin at 7 a.m.

              Run/Walk begins at 8:00 a.m.

 

WHAT:   A 5K run/walk that will allow participants to help raise funds to support

              research, education and advocacy for melanoma.

 

WHERE: Rock Creek Park- 16th St and Colorado Ave NW in Washington, DC.

              Please park in the lot  at the park entrance off of Colorado Ave NW.

 

WHY: Every hour of every day someone dies from melanoma. Recent research shows that overall cancer rates are decreasing, except for melanoma diagnoses! One-in-50 people will be diagnosed with melanoma during their lifetime. The Miles for Melanoma DC 5K Run/Walk will raise funds to fuel additional research for new and better treatment options, and support the MRF as the organization advocates for the melanoma community and educate people about the prevention and diagnosis of the disease.

 

ADDITIONAL DETAILS:

•All participants receive a special race-day t-shirt and educational information about melanoma prevention and treatment.

•Awards will be given to the top finishers in each age group and to the top fundraiser.

•Register early to save! Early-bird registration ends on April 24, 2014.

•Strollers and joggers are welcome!

Registration Fee:

Adult Participant 13 years and over: $30.00

Child Participant 6-12 years: $15.00

5 years and under: Free

 

Join Fighting Melanoma and lets cure melanoma one step at a time!

 

Link to Register: http://events.melanoma.org/faf/search/searchTeamPart.asp?ievent=1093090&lis=0&kntae1093090=CA558C5CEC544BB7BFD16FD70A67E8EE&team=5820927

 

Mission Accomplished - NEW MEK COMBO IS HERE!

The recently approved BRAF & MEK combo is changing the landscape for melanoma patients. It's been a rocky road at best for these amazing doctors who are working overtime to figure It all out,

Lucky for me I am along for the ride!tv9

My news interview yesterday -- WUSA Channel 9 - the CBS affiliate here in Washington DC.  It's kind of funny - they tape you for an hour, use a minute of all of that tape, then they communicate some of the facts wrong (it was 6 months not weeks, uggggg). This segment did what it was supposed to do, though - inform folks about a new melanoma treatment.

Yeah - I did my job.

Lab rat mission accomplished!

Now I will be moving onto this new combo treatment (if my insurance company will approves it, that is! - I've been working on that "project" for four weeks now!).  Fingers crossed that this combo kills this bastard melanoma who has been living of me these past 4 Years.

Love you all - thanks for your support

We started planning the Second Annual "Miles for Melanoma" run/walk. This year It will be held April 26th in Rock Creek Park - I hope to see you there to support the cause.

1 in 10 of us will be effected by skin cancer during our lifetime.  Doctors are getting closer, but we need more research dollars and more lab rats willing to take a chance on the future of science. The finish line is near!

Here is the news segment I was in about the new drug combo that was approved this week.

http://www.wusa9.com/health/article/289062/28/FDA-approves-first-combo-therapy-for-advanced-melanoma

 

HAPPY NEW YEAR! Why not try something new?

Sometimes you just have to dive in and swim even though the water is dark and cold to get to the other side.

There are some things I haven’t shared with you lately because I hate being a whiner – I’ve been having strange neurological side-effects again, and, since April, they have gotten worse. I thought maybe it was just the stress of life, starting a new business, or maybe just running my engine a little too fast.

Who knows…..

Anyway, I can’t really over-think what’s happening - I just figured I’d kick on and keep moving forward. In September it got worse and I was having problems walking and feeling my legs.  All of my limbs were weakening, but I figured “as long as I can ride my horse I can live with it.”  I started to feel a bit more tired, and the sun and light sensitivity was really becoming a bother.

Bla, bla bla…

You’re still alive - suck it up, Sister!

Anyway, this is what lead to the brain MRI I had last Thursday.  Bottom line - the 46 months of PLX4032 side effects have really started to wear on me.  My options have kept rolling over and over in my brain.

There must be a lot of room up there because those stupid options kept rolling around up there…

Anyway, Mike and I discussed the options at Georgetown and they seemed to think I should stay course with my magic pink pills.  To hell with those side effects!

But you know me – I’m always up for a challenge.  

Push the envelope.  

Your only here once - make it count!

There had to be a better way!

On Saturday, December 14th, Mike and I flew to LA so I could make a Monday, December 16th, doctor’s appointment at UCLA with my main man, TR. I thought this was going to be a medically uneventful trip, but I was wrong.  We spent Saturday and Sunday visiting my “sister-from-another Mister”, Melinda, who lives near Temecula, CA. Just hang’in with our Cali cousins, Ally and Casey (Melinda and Leo’s 120 lb german shepherds), checking out the Batmobile, munching in Old Town Temecula and watching various MC’s (motorcycle clubs to the uninitiated) drive by while we ate. We enjoyed watching the parade of humanity……

Caution – Reality break:

BTW - did any of you see that crazy season ending Homeland episode Sunday night?

WOW!
OK, back to the update….

In short, we really enjoyed just “hanging out” with Melinda.

Monday morning came, we had coffee, and Mike and I hijacked Melinda, forcing her at gunpoint to come have adventures with us in LA. As Forest Gump would  say, “Life is like a box of chocolates - you never know what you’re going to get”.  Sure enough, that is how the day went.

First order of business?  We cruised Beverly Hills and did some shopping.  

Fun!

Then, on to serious business.  

We got to TR office and spread some Christmas cheer.  TR came in and I gave him the run down for the past 6-months.  My neurological effects, my fatigue, my aches….

My, my, my….

The wheels in his brain started turning.

(You can, in fact, actually see them turning)

He left the room, pick up my brain MRI and walked back in to the room with a very serious face.  Very serious.

I was scared.  “What do you see…….”?

“First of all, you have a brain”.  

Then he smiled.

“It all looks good to me, but it may be time to consider a different approach.”

REALLY! Can I go off treatment?  I’ve heard that if your cancer is stable for four years many people go off their drugs.  

Is that it?  

Huh?

Is it?

TR explained that “we would not really we won’t know for 10 years if an inhibitor can truly deliver a Durable Response.  And its likely your drug is giving you the neurological issues…..But here’s an idea - maybe you should consider changing to a different drug.  Another BRAF inhibitor.  GSK has one……. The formula is a bit different, and there are fewer side effects. For example, there is no photosensitivity.”  

I’m listening...

TR continued, “most patients who respond to one BRAF inhibitor respond to other BRAF inhibitors.

“most”…..

“And if you are on the GSK BRAF Inhibitor, we can later add a GSK MEK inhibitor – that would give the melanoma a one-two punch!   

Interesting.

I was paralyzed

Not in the neurological way - in the “awe, crap* way.

What to do…….

My mind started racing.  Stop taking the drug that saved my life?  Risk it all?  What about this drug’s side effects – my PLX4032 had side effects that nearly killed me.  And anyway, PLX4032 was my pal.  It saved my life.  Am I trading my savior for another bout of adjusting to a new med?  More fevers and flu-like symptoms?

I asked him if it was like trading Aspirin for Tylenol.

Tylenol for Advil.  

Advil for Aleve…..

“Kind of”, he said, “it’s just that the GSk version is a tweaked version of my drug”.  A better version?  With fewer side effects?  

TR looked at me and suddenly said, “I see this is a tough decision for you, so I’ll make it for you.  Your switching drugs and I’m writing you the new prescription for the GSK drug.  You can start it as soon as it arrives.”

TR just ripped that Bandaid right off!  

That was easy!

TR gave me my first Christmas present.  Looks like I’ll get to lose my Vampire status and be able to move about with my SPF and hat!  

Like a normal person!  

Excellent.  

WOW!  When you’re contemplating a big change, the best thing to do is just do it and don't look back. Or have someone you trust do it….whatever….

Too much thinking leads to insanity -- My 2014 News Year's resolution!

 

Merry Christmas!

My family and I want to wish each and every one of you a Merry Christmas! I know many of you have so many things burdening your mind, like Fighting Melanoma, but there are many things we should be thankful for - family, friends, smart and caring doctors, new technologies............

I hope you all have a great holiday, no matter what you celebrate. And I wanted to thank you for all for being there, for making sure we weren't alone fighting the good fight. You guys have been great therapy for me! Thank you!

Arrivederci LA!

But not good-bye, UCLA!  

You know, I’ve never been a good “breaker-upper”…..

I seem to always come up with excuses - like “the timing is wrong”, or “it's a bad day for change”, or “I’m too busy”, or “I’m too tired”….

I’m not good with lack of flexibility, either….

GENETECH, though, seems to have them both down pretty good, though.

FLASHBACK – GENETECH told me a couple of months ago that they were going to terminate the multiple clinical trials they had for this drug and roll everyone into a “rollover” clinical trial to continue the drug and to continue collecting data.  The sticky point, for me at least, was that they were requiring that I get checked out EVERY MONTH IN LA.  That’s 12 visits / year.  Mucho dinero and mucho time.

Heck, I thought it was a bear coming to LA every other month these last couple of years….

I secretly held out hope that GENETECH would modify the “rollover” clinical trial they offered to transfer me.

I’m a stink’in star!

(I mean, I’m a stink’in star…on this drug!, that is!)

I’ve spent 40 months on the damn PILL when it was supposed to only work 6 – 8 months.   And now they want me to come to LA EVERY STINK’IN MONTH?

I mean, come on –….  

I’m still having a hard time believing this, but GENETECH must not want any more of my data.

GENETECH said NO – you’ve got to come every month.  That or get forget the rollover.

Can you believe that?  If you had a new drug on the marketplace, wouldn’t you  want to follow one of your most successful lab rats and find out the rest of the story?

Not GENETECH!  

Nope.

NEXT!!!.....

It’s too bad, really.  For those who want to try PLX, that is because GENETECH is pitching out their long-term data.  

Sorry to all of you melanoma cancer victims out there – the official data you’re going to get is going to be limited….

Forking out the bucks to fly to LA every month is ridiculous.  It’s been a long haul these last 40 months, not too mention mucho dinero, but the City of Angels delivered my California Dream and has given me the opportunity to appreciate and enjoy my life.

That’s whacked.

They officially terminated my clinical trial for the drug and gave me no other choice – I’m officially transferring to Georgetown and will continue taking the drug via a prescription.

Simple is good. I’m accepting the things I can’t change and moving forward to the next adventure.

The toughest part of the entire deal is not seeing TR every 8 weeks to encourage me and let me know I will be the one from this trail. He saved my life, focusing me on staying the course even when the side effects seemed overwhelming and for the most part just plane inconvenient. I’ll also miss Dr. Roger Lo – he taught me that the desired dosage was defined for a reason.

Oh well…..

The New Doc: Dr. Michael Atkins, Georgetown Hospital.

I meet with Dr. Mike Atkins on May 28th – he’s a nice guy, and a big research doctor with a focus on curing melanoma cancer.  He was in the Harvard Medical System prior to Georgetown, and he and TR are buddies (TR recommended him).

But his strategy / treatment philosophy is different than TR’s.

This isn’t a bad thing, though. Atkins’ focus is on Immunotherapy drugs, like Yervoy and a new study called Anti-PD1, not on Targeted Therapy like Zelboraf.

Dr. Adkins points to the fact that Zelboraf is a temporary fix – that it will never be a long term solution.  I’ve challenged him on this notion, though – look at me!  I’m the Queen of Zelboraf!  There are exceptions to the rule!

He’s not so sure.  And that’s good – I believe that Dr. Adkins will remain ever vigilant to prove his belief, and, should it happen, he’s got a solution for me.
 
Anti PD1 is showing amazing results and is probably the next frontier in Melanoma Cancer treatment. TR is also moving his patients in this very same direction, plus he has some new things up his sleeve, but Anti- PD1 is showing a higher durable response rate than Zelbraf and Ipi alone.  Zelbraf is at about an 80% response rate for 6-8 months and a 5% long-term durable response rate. Ipi about is showing a 30% response rate (with a lot of it durable) and Anti-Pd1 is showing a 40% durable response rate. Kind of amazing!

Here’s something that blows my mind, though – the overall response and durability rate for a combo of IPI and Anti PD1 is over 50%!

My new job at Georgetown is to help Dr. Atkins better understand the benefits of Zelbraf / showing his team it can work in some cases. All the same, Dr. Atkins gave me that talk again….

I smiled and laughed.

He wanted to know if I was always so happy?

I said, “Yes!  Because I am here!”

He smiled, not knowing how to react. He told me he wasn’t letting anything happen to me while I was on his watch.

The good thing for me is that I’ve got two great doctors watching over me. I figure between Dr. Atkins and TR I am in good hands.

Dr. Atkins wrote the prescription and we started the process. It was actually easier than I thought it would be – I mean, how easy is it to force a health insurance company to ante up $20,000 per month for a drug?

The ace team at Georgetown pushed the approvals through the process and now I get my drugs delivered in the mail from Walgreens. My deductible is just $40 a month.

Unbelievable!

June 10 - My last rodeo in LA!

Was it a ride or what?!?

Newman ended my years of travel with the suspense and drama only she could provide. I was ready to get on that horse, feeling good about my plan for this next ride, when suddenly I found out I’m riding a twister. The worst type of bucking bronco and there where no rodeo clowns to save me. What the heck! It’s all on me.

June 10th, the day before my appointment, Liz sent me an email - Cheryl, your CT is set for 12:30 at UCLA.

Hmmm….that’s nice, BUT MY FLIGHT LANDS AT LAX AT 11:30!  She knew that.  She had to be kidding, right?

We’re talking LA.  LAX.  Traffic.  Airline delays.  Rental cars.  Luggage.  

NEWMAN!

And so it begins. Make it or not.  The flight landed and we got off the plane, walked outside, got on the rental car shuttle bus, headed into the rental car place, nothing but smooth sailing…...  

PERFECT!

Until we get inside the rental car building.

POW!

The line from hell. This line reached around the corner and back to the airport (just kidding, but it was long).  This is not good. With my lighting reflexes, I grabbed my bag, kissed Mike goodbye and headed for the door.

On the way to the door I told him, “I’m grabbing a cab and heading to UCLA.” I walked to the nearest hotel I could find and, bingo, I was off.

Made it to UCLA and my CT appointment by 12:30.

Touchdown!

Haggard and beat-up Mike got to UCLA at 2:00.  He look like he had been through a war.

The rest of the day went pretty well. Our Hampton Inn was in Sherman Oaks. Never been there and now we know why.  Even with the Hilton points we earned, the location wasn’t worth it.

Kind a dessert over there - nothing but a big mall surrounded by the LA version of suburbia.  A giant Bailey’s Crossroads.  But the new location gave a view of a different side of LA. I think we’ve seen it all at this point.

June 12 - We hung out in our hotel room and worked away until it was time to head to UCLA at 3:00 to get my final report.

The final show.

I had all my diaries and meds ready for the final drop off.  

My CT results?

Drumroll, please…….

No activity - Those monsters are still hibernating!

Woohoo!

I hope they never wake-up.

TA DA! Winner!

I had a great visit with Dr. Ribas, and we talked about the future and that we have seen more advancement in the past three years than the last 30 years. We agreed that I should visit him every 6 months going forward so he, too, could stay on top of what is going on and I can still be considered an active patient.  TR actually joked about having to find another cancer to cure, because they are that close to figuring out a model that whacks melanoma.

WOW!

I also found out that while in Chicago attending the ASCO conference, TR was approached by the leaders of the Melanoma Research Foundation and they were asking questions about me.

Interesting....

Mike and I finished up business and ended our UCLA trips like we always do -  at Tanino’s for dinner and libations to celebrate our good-news.

Can’t brake the rhythm now - It seems to be working for us!

We had a great dinner, and I even got a picture taken with Tanino!

On another note -

May 19th  -- We celebrated our success of the First Annual DC Miles For Melanoma Fun Run in Vienna, Va.  This was our first melanoma event - we sported 300 runners and WE raised $45,000 that will go towards melanoma research – hopefully one step closer to the cure!

We had an amazing team of warriors and volunteers, and I’m amazed at who showed up. What amazing friends I have. One of which was my friend Nancy’s husband, Brain, who ran with us – THIS MAN IS FIGHTING PANCREATIC CANCER AND HE MADE IT OUT IN THE RAIN TO SUPPORT ME! He had had treatment on Friday and was running with us Sunday morning. Brian ran the entire race and then walked back to meet us walkers. His determination and positive energy is inspiring.

GO Brian!

Team “Fighting Melanoma” was one bad ass team! Out of our 28 Team Members who participated, 8 runners won awards!

Check this out:
 
Third Fastest Finisher over all        Sergei Stratos
First in the 15-18 age group        Sergei Stratos
First in the 1-14 age group        Zach Brown
Second Place, Male 30 -34        Karim Elmahri
Second Place, Women 35-39        Anne Huynh
Third Place, Woman 40-44        Joanna Alexis
Second Place, Women 45-49        Carrie Pham
First Place, Women 50-54        Judy Durham

  1. truly appreciated everyone’s time and generous contributions. Time is a big one - it is the most valuable thing we have to give. And what we can give is limited and dear to us all.

What’s up with me? - looks like I’m in the Melanoma Research Foundation is considering me to be on their BOD. That would be an amazing opportunity to meet and work with the top research doctors, and raise money for melanoma research.  

I’m very excited.

I did an off the cuff presentation for them and apparently it went well. Funny how things work out in life, huh? My question of “why” may be being answered. To help other people survive this crazy little hell called Melanoma Cancer. A wise woman once told me I would survive to help others.

I’m on it, and I’m ready to give back.

On another note - I was quoted in an article in the Baltimore Sun on May 30th.  The article is about the advancement of treatments and a new protocol. I think I was picked because I was winning this melanoma marathon….  

I’m hoping to kick this badass Melanoma’s butt someday soon. I’m tired of him riding on my back. My appointments and scans will continue every 8 weeks, or until I destroy the destroyer.  I’m in the home stretch.

Watch out, Dr. Atkins! I have a point to prove!

SURVIVAL!

LIFE!

Remember - life is what we make it.

Make it count on purpose!

Marti, Patty, Ginger – I’m making it count, girls!

Until next time,

Cheers!

To read the play by play adventure of my journey with melanoma visit http://www.caringbridge.org/visit/cheryl_stratos

 

DC's First Annual Miles For Melanoma

GO TEAM!! 

IMG 9367-low 
 
Thank you for supporting team "Fighting Melanoma". I truly appreciate all of your time and generous contributions.
 
We can celebrate our success at the First Annual DC Miles For Melanoma Fun Run last Sunday in Vienna, Va.  This was our first event and WE raised $45,000 that will go towards melanoma research and take us one step closer to the cure. 
 
We had 300 participates! Team Fighting Melanoma sported the fastest group of runners on this rainy Sunday morning, of our 28 Team Members who participated 8 runner won Awards
 
Look at all my ringers: 
Finishing 3rd over all in the race and first in his age group, Sergei Stratos
First Place in 1-14, Zach Brown
Second Place, Male 30 -34, Karim Elmahri
Second Place, Women 35-39, Anne Huynh
Third Place, Woman 40-44, Joanna Alexis
Second Place, Women 45-49, Carrie Pham
First Place, Women 50-54, Judy Durham 
 
We could not have pulled it off without your support!
 
YEA TEAM!!
Cheryl

 



Melanoma Research Foundation

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