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?
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.
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.
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.
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.
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…...
Until we get inside the rental car building.
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.
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?
No activity - Those monsters are still hibernating!
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.
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.
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.
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
- 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!
Remember - life is what we make it.
Make it count on purpose!
Marti, Patty, Ginger – I’m making it count, girls!
Until next time,
To read the play by play adventure of my journey with melanoma visit http://www.caringbridge.org/visit/cheryl_stratos