Living with metastatic melanoma

Living with metastatic melanoma


(applause) – Is this what I push for the slide? Excuse me everyone I’m quite new to this. (laughing) Thank you. Well, thank you for inviting me here today to share a little bit of my story living with metastatic melanoma. I was first diagnosed over 10 years ago. As you can imagine, well actually, I didn’t even know what melanoma was. And thanks to the new wave
of melanoma and immunotherapy I am still here sharing my story with you. (laughing) Let me see here. How do I do the next slide? Is it this one? That one there? Okay. This is the power of immunotherapy. I would like to point out that… Well, this is me pre. I am in New York on the High
Line and I loved that place. I would like you to picture this. I was 31 years old and through research we decided to go to the the
Peter MacCullum Hospital. That’s where leading
edge trials and research was going on to do with melanoma. 2 years earlier I’d had my naval, the initial melanoma
excised and an oncologist at that time said ”I wish you well. ”Most likely it would be great ”if you could survive
2 years let alone 5”. So expectations at that time weren’t great and if anything please eat more greens. (laughing) Yeah! Okay, but that was great advice, I guess, for that time because not many
people would have survived much longer than that so I understood what that comment was about. So back to waiting in
the waiting room there. My family had moved from
Brisbane back to Melbourne because that’s where we would
have great family support but also be back at the
Peter MacCullum Hospital spearheaded by now
Professor Grant MacArthur. Waiting, I’ve had no
sleep, I’ve been anxious as because you don’t know. All the literature about
melanoma says there are no cures. Really there is none yet either. And I go in, we meet Grant. His reception is calming I would say and he explains to me that
whilst there are no cures there is a lot going on
in this melanoma area. So if we can find the right trial for you, it’s a matter of hopefully
it will work long enough for you to then, I guess, hop onto the next cure. Oh, not cure, sorry, trial. Luckily I had the BRAF gene so I went on to targeted cell therapy, BRAF and MEK inhibitor and that worked for 14 months for me so I had a very merry Christmas that year, and that worked for a while
then my blood, blay, brain. I’ll confess right now,
I have mild aphasia thanks to a brain surgery so it’s a little bit tricky every now and then with my words. It’s all good, I quite love the fact that that’s the only real
side effect that I have. (laughing) I’m here! So after this targeted cell therapy and with that communication
with Grant we knew, that’s a really good key point here, with communication, building hope that there’s something
else maybe out there. There was. And that was Anti CTLA-4. I call it Ippy, people, so for
all you scientists out there please bear with me while
I just call it Ippy. I was onto Ippy which was fabulous, but what had to happen
during that time frame was, the metastases had gone
to my pelvis, my abdomen, and also my brain. So I needed, whole brain
radiation, stereotactic radiation, and a craniotomy. My weight went from nearly 100 down to 40. So we did the radiation, the chemotherapy, all of this in preparation
for then the Ippy. And given my physical entity
at that point in time, Ippy only had a 20% chance of working, according to the trials. Me, I had a 2% chance of that working. Another part of this story
is, ah, that is my scans when the Ippy had kicked in. I find that astounding. My pelvis and my brain, it blows my mind and
that’s the power of Ippy. (laughing) The other part of this story is that Ippy was not available on the PBS. So we had a fund raiser with my family, my friends and my workplace,
ALH, which was astounding. Grant and Mark, another oncologist, they spoke at that event. That’s over 600 hundred people. They raised 120 000 dollars
for my immunotherapy and that is partly why I am still here. Very very thankful for that. After that, I survived that obviously, I came back from basically the dead. There was a little nickname going around that I was the miracle patient. (laughing) One of the first people to
actually go on to that drug, I guess, I think one of the finest thing about that is that it was an international call. I remember Grant being in Boston calling in on the phone to two residents, Shaneen and another doctor who I love but I can’t remember his name right now. Once again, aphasia. And they then went and looked it up, they looked at the
computer and I was in bed and I could hardly move but I
could see him on the computer and I was thinking, oh, here we go! And when you are faced
with a terminal illness, for me I believe in science and I believe in the fact
that if you’re gonna go you’re gonna go, you’ve got to go. If you’re gonna die, well, I’m
gonna give it a chance here. So the fact that it was a 2% chance, of course I’m gonna go, I’m not just gonna wither away here. And my whole family, we decided that we would go. It’s a circle of control for me. I give that across to the people, the experts I would call them and for me I planned my funeral, I gave the jobs as in, like,
social media to my family, one was in control of
‘beauty’ i.e. shaving my legs, that’s just the little things
but when you’re incapacitated, you don’t want hairy, hairy legs. (laughing) It is so minor, but it does add up. And I remember a nurse saying, ”Why are you worried about that?” and it’s like, it is about
still having some pride in yourself at those times, and putting on some moisturizer, you don’t want to
completely become a mummy. (laughing) So those little things add
up and just keep that in mind if you are a nurse or a
doctor, don’t let that go. Oh, sorry, how do I go back? That way? (video playing) Here we go. This is me in rehab. Look at my eyes, if you can. I’m about 40kgs here. (laughing) I can’t actually do this myself but they’re stretching me up. (laughing) That’s it basically, but- (applause) They said it would take me 3
months to learn to walk again, put me on a slide board,
move me over, 3 months, and that was the goals on
a board and my dad said, ”What do you want to do?” and I said, ”I wanna walk,
not get on a slide board” so we wiped it off and 3 weeks to walk and I did it in 3 weeks. So, the power of the mind and positivity is a really good thing and when you, that’s part of putting out with the goals and knowing what is out there and ahead. Keep that in mind. And having a multidisciplinary team, like you were speaking about earlier, I can’t see you right now, but it is a big thing and the
right language with people. I had a doctor who said, ”We’re not going to treat
this like it’s terminal, ”we are going to treat
this like this is chronic”. I knew full well it was terminal, but to say it’s chronic just alleviates a little bit of stress. I said I was on keytruda now and next week I go onto my 88th treatment of that. There are lots of side effects, as you can imagine, I’ve had
a lot of brain work done, I’m early menopause, I’m chronic colitis, I have all these little side issues but it can all be managed and it’s a really small price to pay when the other option is to pass away. So the reason that I keep going, and I think a lot of people do, for me it’s family, it’s for a quality of life that I manage. Though I was a bull out the gate, and Grant recognized that
when I was banging on his door first time I think and
he taught me patience and that’s a good relationship to have. Living a life with metastatic melanoma is about knowing yourself, know your body, be organized, it’s like a business. You have to take
responsibility as a patient, you can choose different doctors. You build a team of people you trust and you communicate well with them, you have to communicate. I love my team, it’s a big team, and that’s why I’m here and that includes my family, my friends. I have a local network, I now
have my drugs in Webster packs and that can be delivered
if I’m not feeling great. It’s local, it’s within my hospitals which are across Victoria now, as well as Peter MacCallum Hospital and I live for my family and I also think, time is nearly up, but I think the new waves
of melanoma treatments that are coming up, the combination trials etc, are exciting and so my heroes now not only
are footballers or athletes, they are the people in research. They are the people who are treating us, there’s a couple here in the
room as you might imagine. I really love what is going on here. So I wish you all well and I hope you keep aiming for the stars because I think a cure
may be not too far away. So thank you. (applause)

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