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.
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.
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.
- 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.
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…
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.