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I am amazed at the changing landscape over the past seven years when it comes to melanoma treatment options. I am happy to report I am still NED after going off the Braf/MEK combo. I am working to help fund future research project and skin cancer awareness. Next month I will start working on a skin cancer program targeted to the construction industry.
Be extra careful if you've got body art...
I am excited to be living at time when research and discovery are on the forefront for melanoma cancer. Remember to research, read and ask questions. An educated patient lives longer
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It’s truly a Happy New Year!
My band of “Guardian Angels” came through for me on January 2. Back in November, my PET Scan lit up – not a good thing.
That hasn’t happened in 5 years….
Needless to say, this created some excitement in the Stratos household. As always, the timing was perfect! Just before Christmas….
Déjà vu!.
My body seems to like surprising me this time of year. It must be confused about what is the meaning of a “present”. J I knew that some of the “growths” where fibroids, but there was “draw” by those fibroids (they were eating the glucose they inject in the area, and that typically means cancer). Anyway, the decision was made for me - it was time for this “lady junk” to come out.
Hasta la vista, baby!
What the hell – I’m done with that junk, anyway and at this point in my life I do not need to carry any access baggage.
And that stuff had to weigh something, right?
Instant weight loss! Who doesn’t like that?
My surgeon, Dr. Boice, said my fibroids were so big that it was highly unlikely he could do the surgery laparoscopically. The biggest bad boy was 12 centimeters.
But he did!
The fibroids were embedded into the uterus, so they just yanked the sucker outta there all at once.
Like a tooth that needs pull’in. YANK!
Yeah. They’re conducting a biopsy on all the tissues, but the early news is that the last growths on my liver were cysts.
Thank God!
That’s been at the back of my mind for some time. After surgery I popped up with a smile and they looked at me like I was an alien. They said most people don't come out as alert as I did.
That’s my super DNA at work, baby!
I came out of surgery and asked, “where’s the party?” I felt so damn good after the surgery they actually said they’d release me immediately if they could. Originally, they told me I would be in the hospital 3-5 days…..
No way! I have to thank my amazing husband, Mike, for being so positive and proactive, my “Mama” Katie, Brother Victor and my dear, dear friends Artemis and Atossa for waiting with Mike and keeping him from losing his mind!
My positive son Sergei was hanging in there with a smile, my wonderful Southdown pals were great - they organized meals for me and the family (went so far as to make stuff Gluten Free!) and my gal-pal, Judy, for giving Yildren some extra love. And last but not least, my Mom and Dad for their continued love and support. As I sat at the cancer center I realized just how far I have come, and how blessed I am, to have such wonderful friends and family….
And some super charged DNA (thanks for that, too, Mom and Dad!)!
What a great beginning to 2016.
Happy New Year!
It’s a miracle and a medical wonder….
My purpose for 2016 is to help the MRF (Melanoma Research Foundation) move closer to a cure, to change melanoma from a death sentence to a chronic disease by funding more research.
Before my surgery I attended a medical conference that was focusing on the different pathways that effect melanoma, and ultimately, other cancers. There are 46 pathways currently in process, and hundreds more to study, but researchers think they are close to cracking the code! They’re figuring out how JAK and EGGK can kill melanoma that has become BRAF resistant. We don't know a lot about JAK (…..we don’t know jack about JAK J) but it could be a game changer.
They’re even studying folks like me - Super Responders – to figure out why this crap works on us and not on others. I believe I’ve been saved for a purpose – maybe they can run isolated trails for some additional variables on me – I willing….
Maybe I’ve been saved for a purpose. Who knows – maybe that’s true….
It is time to try being an astronaut! Discover new frontiers! I want to boldly go where no man has been before!
I want to work towards helping us all become Super Responders.!
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HAPPY 4th OF JULY!!!
Update on me....
I am officially Drug Free!
As most of you know, I'm now 5 1/2 years into Targeted Therapy, first just the BRAF inhibitor, and then both the BRAF and MEK inhibitor. 5 & 1/2 years.....Recently I've been having eye problems. The diagnosis is Uveitiis. According to the docs, fewer than 2% get this, so I guess that makes me one of the lucky ones!
Anyway, it appears that the Targeted Therapy drugs are causing this, and its taking a terrible toll on my vision. My choices are simple - chance losing my vision in that eye all together or go off of Targeted Therapy drugs. I made my decision - I'm going to go off my drugs......
I had a PET scan this week and I'm still clear of active cancer, so that makes my choice easier. And I'm looking forward to dropping my "vampire" status (stay out of the sun due to sun sensitivity), too!
I'll keep you apprised of my progress with regards to both the melanoma and the eye issues. Remember - if the melanoma comes back, I can always go back on the drugs. I just have to be more vigilant going forward...
I hope you all enjoy this beautiful summer! And don't worry - I'll still keep you up to date with new developments on whats going on in the fun filled world of melanoma!
It is that time of year again when there is a lot of fun in the sun happening.
Remember when you are getting ready to run out to the beach to catch that wave or dive in to the pool or just plan hang outside. SPF and lots of it -- don't be like me and strive for that warm tropic glow. It is just not worth it. Over worshipping of the sun landed me years of treatment and $100,000's in medial bills.
Be smart and think about it / me. If I can save one life it will all be worth it.
Prevention Tips:
- Have a yearly skin exam (no matter your age).
- Wear any sunscreen SPF 30 broad spectrum coverage or better.
- Wear hats.
- Wear Sun Protective clothing.
- Wear 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).
- Don’t burn. One blistering sunburn doubles 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.
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I'd like to know how many of you are having trouble with your insurance company paying for your treatments and/or medications. I have what we call here in the United States a "Cadillac" insurance policy by Blue Cross / Blue Shield. For the first 4 years of my illness (stage IV melanoma) I was treated with a Targeted Therapy via a clinical trial. That means that BC/BS didn't have to pay for my medications. During that time my drugs became FDA approved and finally, 1.5 years ago, I dropped out of the trial and have received the medications by prescription, with the insurance company footing the majority of the bill.
Now BC/BS wants me off my drugs. My scans indicate that my cancer has shrunk and don't seem active any longer (hooray!), but all the data shows a strong likelihood that if you go off of a Targeted Therapy the cancer reappears. I see it as ridiculous to go off my medication - is their desire to save money at my life's expense?
I have an attorney I'll sic on these guys if they persist. Anyone out there having similar problems?
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Celibrating National Melanoma Awareness Month!This May my friends joined me in the fight to stop melanaoma. The dollars raised went to develop melanoma research. I want to thank each and every one of you for helping me stand-up to melanoma. Our race raised nearly $100,000. And I have to say with a little help from my friends (especially my husband Mike) I was the top fundraisers for this years DC Miles for Melanoma and Team Fighting Melanoma came in third for team fundraising efforts. My son Sergei continues his winning strick finishing first again for his age group and coming in 7th out of 600 runners. Pretty impresive if I do say so myself. We also sported the MRF GetNaked# campaign shirts to raise awareness of the importance for annual skin screening.
This year we have had many things to celebrate and most of all the Surgeon General took notice and recognize the impact that melanoma has 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.Mike, I and Sergei want to thank our village for coming together to bet this once and for all.