“Drop your dacks and GET NAKED… go on… get naked with a loved one or a skin specialist and check your skin!”
Yep… those were the words you saw me post on The Naked Gardiner Facebook and the message I was relaying for the month of May; Melanoma month. For all my followers out there you will know that it doesn’t stop here, the month of May might very well be over but the awareness continues!
For a Stage IV fighter like me the journey can most definitely be a rough one, but for you it doesn’t have to be and that’s where your part of the bargain comes in! Walking the walk, talking the talk and sharing the message of awareness with me! I can’t even put into words how touched and proud I am of you! The messages I have received from many followers overwhelms me with so much pride, thank you for sharing your journeys with me and thank you for loving yourself enough to take active action for your lives and your families!
For me, the month of May brought many ups and downs as well as a slight hiatus while I took time to digest and practice some much-needed self-care. The adrenaline from The Naked Gardiner Foundation Fundraising Event died down and along with it, fatigue and illness followed. My last treatment of Yervoy immunotherapy ceased on 30 April, which then opened up the emotions of both relief and trepidation for what would come next. As you all read in my blog post “Making Peace with… patience” I not only had to face the outcomes of my latest CT Scan results but also the reality that I was no longer eligible for a clinical trial that I had put my hat in the ring for. You see, it was here that I found out that I was a “wildtype”. I always knew that I was pretty extraordinary, a bit crazy at times, but wild… maybe not what I would ideally write on my resume but the results were in and there was no questioning it… I was a true, 100% wildtype! Hahaha lucky Ant, not sure he signed up for that one!
What this meant was that the results from America determined that my gene mutation was BRAF wildtype and NRAS wildtype and together that made me a “full wildtype” and unsuccessful for the trial led by my oncologist. Was I disappointed? Strangely, no! I shrugged it off in a manner of “oh well”. Why? Because I was not 100% confident that I wanted to participate in this particular trial and because of this “wildtype” result I didn’t have to undertake an awkward mind-battling decision-making experience. My goal has always been focused towards another immunotherapy treatment that would work in alliance with the Yervoy treatment that I had just undertaken.
Then… my CT scan results revealed that the tumors (to this point) remained in my lungs (beside the ever-growing tumor on my once very flat stomach) and not to other organs. A massive sigh of relief was heard down the corridors of the hospital. BUT, there is always a but isn’t there… damn you ‘but’… there were more… a lot more and they were unfortunately bigger. BUT, (do you like how I brought our old friend back?) hope entered its glorious sparkly head!
I can hear you saying “how the hell can hope enter after all of that”? My oncologist informed me that there was to be a cancer seminar in mid May where possible discussions of compassionate access to trial drug treatment (which my support crew and I had been investigating in America) may be available to a small group of Australians, if the seminar was a success.
Then on the morning of 18 May, I awoke to a message from my beautiful friend Steve sending me a link to an article. It was hard to hold back the tears! This was the news I had been waiting for and all the efforts of many amazing people were finally heard! The drug company MERCK was releasing access to the PD-1 drug MK-3475 to a limited group of patients on compassionate access for treatment in Australia. By 8.00 am my oncologist was phoning me from the conference and confirming that my application would be submitted and my ‘patience’ endeavor was put into practice!
Anthony and I were cleared to travel to Ubud, Bali for some very needed rest and relaxation and as I was packing on the evening of 30 May, sitting staring at my ever-growing pile of ‘required’ clothing when the familiar ‘ding’ of my email sounded. There in my hand were the words…”Approved. Drug arrives in June.” Short, sweet, direct and the most welcomed words in my life at that point! You guessed it, I was approved for compassionate access to the PD-1 drug MK-3475.
Results so far show up to half of advanced melanoma patients receiving the drug known as MK-3475 respond to the treatment, compared with between 10 and 20 per cent using the most effective current treatment, Yervoy.
Tears of relief flowed free and not much focus was spent on packing! This news is a lifeline, for me and for the handful of Australians that find themselves in a similar situation with this disease where treatment options are limited. Gaining access to this drug opens a new level of hope. Hope to a longer life to share with my loved ones and hope that with the advancements in technology and immunotherapy we might just be a few steps closer to finding out ways to live with this disease and thrive. Not only this, it meant that I could have treatment in Australia, where my incredible support crew is strong and that my baby boy Winston will still have his fur mama by his side!
In the words of Ron Walker, the angel who advocated access to this drug:
“It won’t be 100 per cent successful, but it provides people with a chance and that is what they deserve, a chance to get better. Melanoma is the fastest-growing cancer in Australia. It is everywhere, so people deserve to have the latest technology.”
Today, 24 June 2014… I commenced my very first treatment of MK-3475. Today, I join 479 other patients in the world who have access to MK-3475. Today, I am more focused than ever to love my body, to nourish it and to support it as physically and mentally possible during this lifelong treatment and beyond. Today brings determination to bring more awareness to healthy living and disease prevention. Today, brings a renewed hope! Today, I am here!
With love, light and an abundance of gratitude xxx
HI Kathy I’ve been reading your posts with interest and you have amazed me with your positivity. You are an inspiration to not only those who living with cancer but also those of us who aren’t. You write with an awareness, compassion and honesty. There is a “realness” about what you write without giving away too much which is refreshing. I think you could write a book – you seem to have such a natural way with words. I’m glad to hear that you’ve been given access to this drug and I hope that it helps you. I’m a big believer in “what goes around, comes around” and you emanate so much love and positivity that this will come back to you tenfold. You have such amazing friends to help you. Anyway, I just wanted to say “thanks” for your posts. They have given me a lot to think about and I really look forward to each one. Take care Kathryn Byrnes
Bless, you are so gorgeous Kathryn! Thank you for your very kind words, it is very special for me to read them! xxx
Hope plus someone to love us is all we humans ever really need. Bless you Kath. Jeffery and Jane
Big love to you both! xxx