- Written by: Cheryl Stratos
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…”.
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.
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.
I’ve added the MEK drug now for 34 days and have had no real new side effects.
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.
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.
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…
- Written by: Cheryl Stratos
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!
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.
- Written by: Cheryl Stratos
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.
•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!
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!
- Written by: Cheryl Stratos
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,
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.
- Written by: Cheryl Stratos
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.
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?
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.
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?
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.”
TR continued, “most patients who respond to one BRAF inhibitor respond to other BRAF inhibitors.
“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!
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!
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!