- Written by: Cheryl Stratos
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.
- 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.
- 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!
- Written by: Cheryl Stratos
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!
- Written by: Cheryl Stratos
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….
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.
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.
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.
This surely can’t be correct….
No Memorial Sloan Kettering…No University of Pennsylvania…No Vanderbilt…..
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…….
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”…..
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.
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).
Newman informs me that the office is closed that day and that I’ll have to reschedule.
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.
Because we had found out about the trial!
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…..
Change is a process begins or continues - however you look at it.
Still beating the odds.
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.
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.
- Written by: Cheryl Stratos
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.
- Written by: Cheryl Stratos
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!