My Story - Fighting Melanoma

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

 

Vermurafenib - Not Everyone Is Up For A Holiday!

Experts look at the up side of taking a drug holiday. Not everyone is convinced, but

I LOVE MY HOLIDAY!!


However, a vemurafenib expert discouraged any use of the drug outside of labeling. "Clinicians should not try [intermittent dosing] at home," said Keith Flaherty, MD, from the Massachusetts General Hospital Cancer Center in Boston.

Read more -- http://www.medscape.com/viewarticle/782715

Three Years and One Month on Zelboraf!

Last day in LA - taking a red-eye back to DC tonight. The visit with Dr. Ribas went great, and everything seems to be on track.

I spoke with Dr. Ribas about future options, should I need to consider them. First discussed adding a MEK drug to my current BRAF treatment, though he said (and correctly so) "why rock the boat", that since everything was working so well with the BRAF drug, and in his mind, the fewer drugs, the better.

Next was Anti-PD1. Now he got excited - he said that Anti-PD1 was making a huge impact, and that future results would do nothing but get better. With a positive response rate of 30% - 50% currently, that's saying a lot. Anyway, Anti-PD1 is likely what he'd suggest if something went wrong with my BRAF treatment.

Finally, I asked about TVEC. I noted that he was quoted in one of the articles praising TVEC. He said he submitted both positive comments AND negative comments about the drug, and that the journalist decided to ignore the negative comments. Hype? He didn't say that, though it appears he's not too excited about TVEC.....

That's it. Sergei and his buddy AJ had a blast with Mike and me over spring break - skiing in Arizona, hanging in Harrah's in Laughlin and playing in the sun in Malibu. But its time to go home....I miss my family. And my dog. I'm coming home, Zoe!!!!

Melanoma Awareness

Bring It On!

 

We are getting into the warm sun filled days of Spring and May is Melanoma Awareness Month, and throughout the country there will be fundraisers and races to promote awareness and shed some light on prevention and advocacy for this disease. 

Protect your skin!  

Your skin is one of your largest assets -- after all, it’s the largest organ in your body. Treat it with respect, care and tenderness. Did you know if you used a tanning bed before the age of 30 the risk of you getting melanoma rises 75%. Scary -- I don’t know about you, but I was one of those tanning bed “Hawaiian Tropics” kind of gals? in the 80’s who was in search of that perfect glow. 

Guess where that got me? 

In a long-standing relationship with Mr. Melanoma… 

Did you know that UV light is a known carcinogen, and too much of it can age your skin and can damage your DNA. Kind of crazy that in Virginia you can still be under 18 years old and get into a tanning bed.

Get your skin checked and often. Current recommendations are yearly skin exams by a dermatologist.  If you are at high risk for melanoma, you may need to have your skin examined even more often.   This can help you to not only have GREAT skin, but you could even save your life. 

Melanoma is the fastest growing cancer in the United States and worldwide. Chances are it will affect someone you love sooner or later.

Facts:

    • You have a 1 in 50 chance of developing melanoma throughout your lifetime. 
    • Melanoma can develop on anyone.
    • Majority of melanoma is caused by exposure to UV light and sunlight (yes, that means tanning beds).
    • More men contract melanoma than women.
    • Young women, under the age of 39, have a higher probability of developing melanoma than any other cancer except breast cancer.
    • Melanoma is the most common form of cancer for adolescents and young adults 15-29 years old.
    • When diagnosed early, 99% of melanoma patients survive longer than 5 years. The survival rate falls to 15% for patients with advanced melanoma.

 

Prevention Tips:

    • Seek out the shade, especially between 10 AM and 4 PM.
    • Don’t burn.
    • Avoid tanning and UV tanning booths.
    • Cover up with clothing, including a broad-brimmed hat and UV-blocking sunglasses.
    • Use a broad-spectrum (UVA/UVB) sunscreen with an SPF of 15 or higher every day.
    • Reapply sunscreen every two hours or immediately after swimming or excessive sweating.
    • Keep newborns out of the sun. Sunscreens should be used on babies over the age of six months.
    • Examine your skin head-to-toe every month.
    • See your dermatologist every year for a professional skin exam.

 

It’s kind of amazing to think that up until 2010 the treatment of melanoma had not changed in 25 years. Through the advancement of research organizations like the Melanoma Research Foundation (“MRF”) we are starting to see rays of light at the end of this once dark road.

The MRF is the largest independent organization devoted to melanoma. Committed to the support of medical research in finding effective treatments and eventually a cure for melanoma, the MRF also educates patients and physicians about prevention, diagnosis and the treatment of melanoma. The MRF is an active advocate for the melanoma community, helping to raise awareness of this disease and the need for a cure. The MRF's website is the premier source for melanoma information seekers.

 

For more information on The Melanoma Research Foundation (MRF) visit http://www.melanoma.org

 

 


Get out your running shoes and let's beat this thing one step at a time!

 

Join Us For The First Annual Miles for Melanoma DC 5K Run/Walk 

Sunday, May 19, 2013

Vienna Train Station (The WO&D Railroad Station Stop in old town Vienna)

 

Registration is 7am-8:30 

Run Walk begins at 8:30am 

Registration Fee is $30 for 13 and up, and $15 for those under 13 year of age.

 

Here is the link to the registration site : http://events.melanoma.org/2013DC5K

 

 

Attendees will learn the best way to prevent skin cancer, have an opportunity for a free skin check and just have FUN!  Sport your best SPF / UV protective clothing and celebrate with some added colored zinc on your face and nose for extra protection.  

 

You can still play outside and keep your skin safe!

 

See you in Vienna at the WO&D Train Station on May 19th!

 

Great 22 min video with Toni Ribas, Steven O'Day & Krista Rubin!

They discuss one of TR's actual cases that started with interferon and then went with a vaccine approach, which failed. Today, they would have the following treatments options: ipilimumab, vemurafenib & surgical resection. The discuss what they would do if presented with the situation now.


You will need to register but it is worth it -  A MUST SEE!

http://www.healio.com/footer/account-information/login?returnUrl=/hematology-oncology/education-lab/2012/09_September/Practical-Approaches-to-Metastatic-Melanoma-in-the-Molecular-Era-Case-Challenges/Video

CHANGE

The one thing you can be sure about in this life is that something is going to change.

Don’t be scared of change - grab hold of it with both hands, like you’re about to plunge down a steep hill on a roller coaster. Enjoy the thrill because you’re tasting life first hand!

January 29th was a Tuesday, and we landed at LAX at 11:30am.  We had just enough time to rent a car and head over to my 1:00 pm CT Scam at the lab, wait for the results and then meet with my doctor at 4:00. We try to plan these trips so they just kind of fall in to place.

Then I noticed I had several messages on my phone….

Crap!

I hoped it was a work thing….

Please don’t let it be a doctor thing….

I listen to my message,

Not just my doctor, but all the doctors wouldn’t be in the office for the rest of the week.  They were attending some meeting someplace that suddenly came up.

If I still wanted to meet, it would be with the nurse practitioner.  And I needed to get to the clinic by 1:00pm. My CT Scan would be reschedule, and they’ll with the results.

Guess the day is not going to go as planned.

Nothing like packing up your life, flying across the country, renting a car - all to find out your doctors not in.

The coordinator for my clinical was also out of the office.

Oh well….  

I was there so I was going.  Met the nurse practitioner – she was new to me, but nice.  Turns out she was also the coordinator for the new clinical trial Dr. Ribas wants to transition me to.
 
How exciting to meet a bunch of new people…..

But something interesting happened.  When I introduced myself to the new coordinator she looked at me and said, “I know you! You’re famous! I’ve read all your reports and articles. Wow, you’re the “lucky one”!”

Damn straight I am!

Just call me “Lady Luck”!

I feel like a diva.

Anyway, she checking me over and told me I looked good.

Damn straight I look good!

Well, except for my hair.  

I hate my hair.  

This crazy drug’s got my hair sticking up – I look like the Medusa.

Anyway, she said I looked good.  

Except for the blood pressure.

It’s high.

Apparently, its a drug side effect.  Magnified by all the gyrations to get to the doctor’s office.

Then this new coordinator looked at me and said “your trial is over.  You’ve got to start thinking about the next step.”

"THE ROLLOVER" was another word for CHANGE.

This is the deal.  An experimental drug is tested on a number of people so that the doctors can figure out if the drug works.  But that’s just a part of it – they also test the drug in a number of different environments, too.  Like with different drugs to test how the drug interacts with them, or as a “first treatment”, or a “subsequent treatment”, or in combination with something weird.

Anyway, there are a bunch of different trials for my drug.  People in those trials fall out of the trials – some because the drug isn’t working for them, some because of the side effects, and some, well….you know.

Anyway, after a while these trials are down to just a couple of people, or no people, and the record keeping, accounting and reporting requirements are economically screwed up, so they “roll up” all of the patients and put them into a “Rollover Trial”.  

That’s where I’m at now.

It makes sense, and I’m all for helping out the pharma company.  

The catch is I have to start going back to UCLA every month again. I thought I may have the chance of getting into another study that was closer to home.

So I thought - WRONG.

We noticed that none of the hospitals we where familiar with are on the list of rollover study centers. The closest study center is going to be in Morgantown, WVA.

Really?

This surely can’t be correct….

No Memorial Sloan Kettering…No University of Pennsylvania…No Vanderbilt…..

CRAP!

We went over to the hospital got my CT and left the hospital with a kind of Scarlett O'Hara approach, we will think about it tomorrow. We left the hospital around 4:00 pm and drove to San Diego where I had a trade show to attend for work.

San Diego was a success, and then on Thursday we left for Reno, NV where I had another event that started on Super Bowl Sunday.

I did not want to fly home or spend a long time in Reno alone – the place gives me the willies!  I keep thinking about that Johnny Cash song….

“I shot a man in Reno…
 Just to watch him die..”

Once you spend a few days in that town, you get it.

Of course, I made Mike come with me to Reno and we got to spend a lovely weekend in Lake Tahoe, and that weekend was followed by a very exciting Super Bowl party in Reno where Mike, my friend Kelly (a person I work with) and I were the only Raven fans in a casino party made up of thousands of 49er fans.  Everyone was sporting 49er jerseys.  
Except us, that is!

Even Mike, a die-hard Redskin fan, was wearing the Ravens purple and black (Mike doesn’t want anyone to know he “cheated” on his ‘Skins, so please keep this part between us).

Ha ha ha ha!

It was cool being there in a crowed of San Fran fans whooping and cheering.  Until the last few minutes of the game, that is….

Uh Oh! -- we really could be shot in Reno!

For cheering the wrong team!

We weren't, though.

Instead we made the local Reno news for being the few brave Ravens fans in the crowd.  

Anyway – back to the medical stuff.

I got a call Monday from UCLA that the CT looked great. And, BTW, “what do you want to do about the trial”?  Stay at UCLA for the rollover, transfer to another hospital, or just get a prescription for the magic pink pills at $250,000 per year”….

Remember how I started this latest installment of How Cheryl Turns?

Change is a coming.  

It was time to talk to my insurance company again and see how keen they will be to pay for this magic pink pill.

Something to think about….

Anyway, we finally made it home, safe and sound, to Dulles.  As always, I called my mom to come pick us up, she said she would be there in 30 minutes. We grabbed a chair and sat by the exit doors to wait.

I started reading my book, but before I knew it my mom was there. We got home and started to unload the luggage….

My suitcase, Mike’s suitcase, my bag with the medicine…….

Oh S*^%!  

I was missing my bag of “tricks”!

THE PILLS were GONE!

Two stink’in months of pills were gone!

OMG – WHAT THE HELL DID I DO WITH THAT BAG!

We immediately went into panic mode.

We got into the car and drove like lunatics back to the airport. I called airport security - it only took me 10 minutes to get a live officer on the phone. I told him what happened and that I was reporting an unattended bag.  He assured me they are on it!

Thirty minutes later we are back at the airport. I jumped out of the truck ran over to my chair and there it was!  

My little bag of “tricks” was waiting for me.

Wow!  I was so happy and concerned all at the same time.

On the way home I called airport security to tell them that I had found my bag – they could call off the search!  But the guy that answered asked, “what bag?”.  I explained I called and the officer was putting out an alert for the bag.  The officer said there wasn’t any alert issued.  And heck – “those guys just went off duty”…..

Hmmmm.

Oh well - never mind. I was happy not have to spend $20k on my missing meds!
 

Going through hell trying to schedule my next visit, and its all because of NEWMAN!

Newman is what I call my clinical trial coordinator.

I have had a long love / hate relationship Newman - she’s been my nemesis; just like the Newman character was Jerry Seinfeld’s nemesis on Seinfeld.  

NEWMAN!

I have been trying to get NEWMAN on the phone for the past 4 weeks to get the low down on my next step, but no luck!  She’s good at receiving the message, but she doesn’t return it.  And returning the message is really the most important part of the dialog, isn’t it?

I won’t go in to the details cause they’re boring, but if you’re job was to coordinate cancer patients wouldn’t you get back to them?  Especially if it concerns treatment?

NEWMAN is lacking some people skills.

I finally went over Newman and sent an email directly to my Doc.  Know what he did? He responded immediately – my next appointment would be March 29th, and we could discuss options.

Mike did his magic to get airfare squared away – Sergei has Spring Break that week so we thought he’d like to come out to LA with us. I decided to confirm everything in an email (remember NEWMAN has been on the entire email chain with not so much as a peep).

Then BAM!

NEWMAN!

Newman informs me that the office is closed that day and that I’ll have to reschedule.

NEWMAN!

She didn’t just say that, DID SHE?

Mike emailed her back because I was afraid I wouldn’t be so tactful this time. My Doc quickly replied, “Don’t worry - I am working that day. I’ll see you”.

Thank God for Toni Ribas! He’s the ANTI-Newman!

Our relationship with NEWMAN actually goes back years - she was the first person I spoke with at UCLA about my Clinical Trial.  We started our relationship by her being angry at us.  

Why?  

Because we had found out about the trial!  

HUH?  

She said she’d get back to us but never did. In the mean time, though, I tracked down TR in Berlin and got an appointment.

Anyway, sometimes change is no change…..

(Deep, huh)…..

Change is a process begins or continues - however you look at it.

Still beating the odds.

And WINNING!

We continue to move forward and consider new options to fight Mr. Melanoma.


New Developments for Zelbraf:

Over the past few months, I’ve found out that Zelbraf shows an extended period of affectivity in lab rats when the dosage is frequently changed. It’s thought that the changes in dosage confuse the cancer gene.

Change is kind of my MO.

Keep’um guessing.

Turns out that drug holidays and not always remembering whether I took my pills or not has worked for me!

I guess it’s kind of like working out, doing the same thing every day - your body gets used to it and you do not get has fit.  

Little did I know that my absent mindedness would be beneficial.

I rule!

Holidays Are Always Good, Specially When They Can Extend Your Life

Alternating Dosages of Vemurafenib Could Delay or Prevent Resistance, WOW!

In a new study published today in Nature, researchers using a mouse model of melanoma were able to prevent resistance to vemurafenib by altering the dosing schedule from a continuous daily dose to an intermittent dose, suggesting a possible way to prolong the onset of resistance for melanoma patients.

This is very interesting, especially to me - I've been on Vemurafenib / Zelboraf for 35 months, and to facilitate my staying on the drug, my doctor has allowed me to alter dosing. My experience? The drug keeps working.

If you are taking this drug please read this artical and ask your doctor about effective dosage level and screw the side effects at least in your first 6 months. I had every side effect listed and I truely believe it was my body batteling it out with Mr. Melanoma.

Check this out and don't forget to ask lots of questions.

http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/2122328

 

HAPPY HOLIDAYS

The holiday season is officially upon us and it is time to be thankful for all the gifts in life!

I am thankful for all the new developments and discoveries that have been made in Melanoma research this year. Really amazing stuff. In fact, I heard that MD Anderson has started what they are calling their own “Race to the Moon” campaign. It’s named after Kennedy’s famed Race for the Moon speech.

“Kennedy did not say we were going to study how to go to the moon. He said, 'We’re going to go to the moon,'” MD Anderson President Ron DePinho said at a morning press conference. “It’s not enough to discover, we must do."

The program is establishing six separate teams of researchers and clinicians to focus on CURING acute myeloid leukemia and myelodysplastic syndrome, chronic lymphocytic leukemia, melanoma, lung cancer, prostate cancer and certain types of breast and ovarian cancers.

Hear that Marty?  Patty?  Ginger?

We’re going to the moon!  

For all of you guys!  

This year has had it victories, but it’s also had it’s losses.  We have lost far too many young men and women each year to Melanoma. I had to say good bye to my melanoma buddy and gal pal Marty this past June.

Man, that was tough.  

I’m confident we’re close, and with the help of warriors like Marty, Patty, Ginger and all the other unsung heroes, it appears that we’re getting closer.  Hopefully, MD Anderson’s “Dream Team” of cancer research doctors will go to the moon in 2013!

They’re going to do it!

I am thanksful I am still kicking Mr. Melanoma’ s buttocks!

I found out that there is one more side effect that this drug causes.

Enlarged fibroid growths.

And I got ’em.

I like to say that they’re European because I tell people they’re taking residence in my “Netherlands”.....

Okay, they have taken residence in my uterus and in other precious real-estate throughout my body.  They’ve gotten to the point where its time for them to go bye-bye.  I’ve got surgery on December 6 where they are going to be nuked. Hey, I guess I was kind of missing hanging out in hospitals (just kidding!).

Once again my body is giving me “seasons greetings”.

I’m also dealing with some administrative ka-ka - I’m the last one in my clinical trial, but there are several left in other clinical trials that are using the same drug.  I was notified that Genetech wants to “roll up” all of us “survivors” into one clinical trail - apparently, there’s a lot of cost to maintaining multiple trials, and one way for them to cut costs is to roll everyone up into one final group - kind of a “catch-all” group, for us lab rats still on PLX. The bad news is they may make me go to LA monthly again.  That means doubling my travel to LA from every other month to every month, and would be expensive.  There may be a silver lining to this, though - I may get an option to move my treatment and monitoring to a hospital closer to home.....

Time to call my friends at Georgetown.....

And, do you know what I’m doing right now?

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


Merry Christmas, Happy Hannukkah, Happy New Year, Kwanzaa, Boxing Day, Egg Nog Day, Wineries Day, Pumpkin Pie Day, Chocolate Day or whatever you happen to be celebrating this holiday season!

Cheers!

Cheryl

The Big C

No matter what you’re fighting -- Cancer is a game changer.bioshot

You will never leave the same way you arrived. I'm building this Melanoma Survivor's Manual from the perspective of a melanoma survivor. I hope you will join me to build a resource center for melanoma warriors and their caregivers to connect and stay at least one step ahead in the toughest marathon you've ever run.

Melanoma came into my life on September 7th, 2009, the day after my 45th birthday.

My body had started to short-circuit - I felt this strange numbness all over. A bunch of tests later doctors concluded my numbness was likely caused by the onset of multiple sclerosis ("MS"). How could this be happening to me? I’m an active, healthy and never sick chick. I didn’t even have a regular doctor! Now I needed a neurologist. Fast forward 77 days On November 23, 2009.

I was diagnosed with Stage 4 Metastasis Melanoma Cancer. My doctors could never determined where my “primary” was located (where the cancer started), though they did know it did not appear as a typical skin irritation or mole. In fact, my doctors believed the primary was likely in my lung. My diagnosis did not come easily or quickly. At that point Melanoma protocols had been stalled for nearly 15 years, with no progress towards extending life expectancy for Stage 4 metastatic melanoma patients.


Clearly, the odds weren't with standard protocols - my only real option was to consider a clinical trial. Getting into a clinical trial and getting treatment was not easy. Turns out you've got to be a detective. You also need a "Cancer-ierge", or Cancierge, my name for someone who can help you navigate the process.  Your Cancierge writes the questions you need to ask at your appointments, takes notes and stays by your side. My Cancierge is my husband Mike - he's been amazing at his new job! Plus, he can tell a good joke - laughter is the most underrated form of treatment.

We started at Georgetown University Hospital, more because we lived near the hospital than for anything else, but they didn't focus on Melanoma Cancer. 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. My doctor at MSK suggested Vanderbilt, but that didn’t work out, either. I then tried Texas Oncology and The Angeles Clinic but finally struck gold at UCLA.  

Since we live in a suburb of Washington, DC, this was going to be a big commute. It took me until February 28 before I could start the clinical trial at UCLA - it was a Phase I trial for PLX4032 (now known as Vemurafenib or Zelboraf). I’ve been active on this clinical trial ever since, and during this time this drug has not only stopped my cancer from growing, it’s now only a fraction of its original (baseline) size. I've 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. My most recent PET/CT scan didn't show melanoma progression.  Heck, nothing on that scan lit up! I’m hoping that PLX4032 is the magic pill that makes my Melanoma go away. PLX4032/ ZELBORAF has been one of the fastest drugs ever approved by the FDA and it is changing how we fight cancer. During this odyssey my husband Mike and I learned some interesting facts. 


 

First, you need to advocate for yourself - reach out to friends, family and friends of friends. YOU and your team need to determine the right path for you and your disease. There isn't a “Melanoma for Dummies” users guide available. I have learned that getting connected can save your life. I hope this site becomes a user-friendly resource that will connect melanoma patients with the latest treatment options and other patients that are either on your treatment or considering your treatment. I have learned a lot from other patients on PLX4032.

It is nice to know there are other folks out there dealing with your same side effects, decisions and resolutions. The medical community is close to finding a solution to this disease - it's just a matter of time.  The goal is to hang in there until that cure comes along. Helpful Tips: Research which hospitals are the leaders in your type of cancer, review your options and their statistics. US News and World Reports assesses hospitals every year at http://health.usnews.com/best-hospitals. Clinical trials may produce better results than the current standard of care. Visit www.clinicaltrials.gov. Interview your oncologist - are you are comfortable with them?  

You'll be spending a lot of time with this person, and its my position that you need someone who is positive and has a good delivery. Ask questions and keep your copies of your own records.  If you don't understand, ask / write everything down and make sure you ask for copies of all your scans (CT/PET/MRI).


 

Get a big accordion folder and label each section. It will come in handy one day. Everything takes a lot of time, and time goes slowly when you're waiting to be treated. Make sure you have a good book - buy a Kindle. Be your own Advocate, and/or find someone who will be your Advocate. A good Canceierge could save your life. Ask for help – you’ll be surprised of the results. Email and call friends and family – this is not a time to be shy! Think outside the box. Combining Eastern and Western philosophies can work miracles. Consider yoga, Reiki, mediation, acupuncture, prayer, energy work, or anything else that keeps you feel positive and moving forward. Eat “healing foods”. Remember, “Garbage in, Garbage out”. Veggies with bright colors and big leaves are your new friends. Stay away from processed stuff. You are building a castle.      

Every time a door closes, another one opens. It’s up to you to find that door! I've learned to be flexible, appreciative, value each day and enjoy every moment. Some people live 90 years and never understand the importance of this.  

Start winning your fight today!  


  



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