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August 2, 2014 at 11:17 am #22127MathewRParticipant
One year ago today, I started on the GSK combo (Tafinlar & Mekinist) as my initial treatment following Stage IV diagnosis. Just a few days prior, I had been rejected by the NIH for their TIL trial because I wouldn’t survive it–heavy and aggressive tumor burden. The clear implication was that if the BRAFi didn’t work, I was toast. That ride home from Bethesda was the longest few hours of my life. My mind was racing. The guilt of ruining the lives of my wife and kids (then 4 and 2 months), the regret of not having acted sooner on that mole taking a odd shape ten years before, the fear of disability and death. I’m not sure which was worse–my tumor burden or the psychological burden!
In any case, at that point, while I was relatively asymptomatic just a few weeks prior, I was fatigued, had little use of my lower left arm as a result of a bone tumor and had just been diagnosed with a brain met. So, I started on the GSK combo, had the bone tumor in my arm radiated and celebrated my 40th birthday having a gamma knife procedure for the brain met. Below is my initial post on MPIP just a week or so after starting the GSK combo.
The GSK combo worked quickly–miracle drugs in my case. They reduced my tumor burden dramatically and gave me my (new, melanoma-altered) life back. (The radiation for my bone tumor and gamma knife worked too.) In addition to the GSK combo, I’ve since taken my shot with ipi. I’m probably not a responder. My scans have been stable since ipi and I continue with the combo. Although I’m far from NED (I still have 12 or so tumors in my liver), I feel fine–really well actually. I lead a normal (melanoma-altered) life. I work full-time, spend time with my family, run errands, go to sporting events, concerts, etc.
I’m certainly not one of those “cancer is a gift” people, but in some ways, this year has been one of the best years of my life. Cancer makes everything so much more urgent and vivid. I’m grateful for having had another year of watching my kids grow, of being with my wife, of being here for the simple things, like the change of the seasons, a great cup of coffee, etc. I’m grateful for another year of work, of helping people, of feeling productive. And, I’m grateful for feeling relativley well for most of this year.
I’m keenly aware that I’m now on the right of the median of progression-free survival on the GSK combo. So, I try not to take anything for granted. I read your posts (thanks for those–I continue to learn so much from you) and I continue to work on Plans B, C, etc. And, I continue to enjoy my time.
Best, MatAugust 2, 2014 at 11:37 am #65146Catherine PooleKeymaster
And Mathew was so kind to share his time and be a great part of our video, giving some great wisdom along the way. You can see him here: http://melanomainternational.org/events-webinar/patient-experience-video
Thank you to all who share and help so many others!August 2, 2014 at 8:09 pm #65147buffcodyParticipant
Never quite know if congratulations are the best thing to say on such a wonderful occasion, but you certainly deserve them. But I know all of us fellow survivors share in your happiness. Thank you for sharing it with us. It is very encouraging for us all!!!August 3, 2014 at 2:58 am #65148AnonymousGuest Well said Frank!
And how are you doing?
Checking up on you.
JeffAugust 11, 2014 at 1:13 pm #65149LesliParticipant
Thank you for your thoughtful post. Your consistently informed and positive presence on this forum and via email have comforted me in the middle of many a sleepless night in the past year. The shock, the fear, the choices (thank heaven for some choices) can feel very alienating from even the closest of support team members and having access to others who are meeting with their oncology team, researching and experimenting helps the process of adapting to a “new melanoma altered world” feel less daunting.
As you know, I too was diagnosed a year ago in a very similar state–relatively symptom free (mild side ache that I thought was an overused muscle), no primary,12 liver metastasis, multiple bone, 12 brain, bam! And I have continued to exercise, work full time, support the college search process, make dinner….and Zelboraf + Mekinist for 9 progression free months, now Ipi, 1 easy peasy craniotomy (the steroids almost caused a divorce, but we are beyond that now!) and 4 gamma knife procedures.
I am grateful for every day, for the chance to be intentional in my interactions, for the chance to have this time where my actions are absolutely in line with my priorities (from how I choose to spend my time and with whom to my dedication to supporting other people on this forum who are just starting the process of adapting to a melanoma altered world). And I have been grateful for your generosity and the help of so many others (Catherine, Celeste, Jonathon, Jeff, Erin, TJ to name a few) who take the time to support total strangers half way around the world.
Thanks everyone. The sun is rising here, I’ve checked for swollen lymph nodes and I am off to face another glorious summer day.
LeslieAugust 11, 2014 at 3:03 pm #65150MathewRParticipant
Thanks Lesli (and everyone)–I appreciate your kind words and support.
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