[ Anglais] Don’t Lose Hope, An Advanced Melanoma Survivor Speaks

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Topics include: Patient Stories

T.J. Sharpe, a melanoma survivor and patient advocate, takes us through his diagnoses and how his cancer affected his life. It started with a small mole on his clavicle. Thanks to his mother’s encouragement, he got it checked out. Luckily for TJ, his cancer, although he would have preferred not to have it, came at a time when there were a lot of breakthroughs for melanoma. He underwent a clinical trial before finding the right one that worked. He offers very real advice by telling his fellow patients not to lose hope in the battle; to make time for those that you love, and to take the opportunity to slow down and realize the life, and family around you.

Editorial Note: The immune-therapy/PD-1 treatment combinations T.J. received, both in and out of clinical trials, represents a maximum of treatment options and not the current standard of care.

This in-person town meeting was sponsored by the Patient Empowerment Network through educational grants from Genentech and Novartis. It was produced in partnership with Banner MD Anderson Cancer Center, and the Melanoma Research Alliance.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Andrew Schorr:

Hello.  I'm Andrew Schorr, and I'm sitting with T.J. Sharpe from Fort Lauderdale, Florida, who has been living 14 years with a diagnosis of melanoma.  So first, a little spot and then unfortunately later, years later, 12 years later a recurrence.  T.J., how did that first spot show up? 

T.J. Sharpe:

It was a simple, little mole on my clavicle that I don't know I ever would have gotten checked out it if wasn't for someone telling me to go to a dermatologist.  And I went, and they took it off and said you should be fine.  And I got a call two weeks later that said don't believe everything you read on the Internet about melanoma, but get yourself to the hospital.  

Andrew Schorr:

Hmm.  Okay.  And someone else noticing it, was that your mom? 

T.J. Sharpe:

It was my mother. 

Andrew Schorr:

Thank God for mom. 

T.J. Sharpe:

Yes.  

Andrew Schorr:

So you went in, and then you had it cut out, right?  

T.J. Sharpe:

Mm?hmm. 

Andrew Schorr:

And what did they tell you about whether you ever had to worry about melanoma again? 

T.J. Sharpe:

They said I would have a 50 percent chance of getting it again. So I lathered up the sunscreen, I put on the floppy hat, I wore my long-sleeved shirts, and meanwhile the same melanoma was inside me for 12 years. 

Andrew Schorr:

And you had no idea.  And, of course, you were in the New York City area working in IT, and you'd go to the Jersey Shore.

T.J. Sharpe:

Yes. 

Andrew Schorr:

And did as a kid, as well, maybe had some sunburns… 

T.J. Sharpe:

I'm sure. 

Andrew Schorr:

…and as well.  And so then 12 years later—and by then you were married, you had one young child and another one had just been born, your son Tommy.  A month later, you were living in Florida. Then, what happened? 

T.J. Sharpe:

I started having a spiking fever and figured that I had caught something so went to the hospital with the assumption that it was just something, a bug going around.  They took X-rays of my chest, and the doctor walked in and said, with your history of melanoma we believe you have a recurrence of your cancer.  I was floored.  I was there for the fever.  I thought they had misdiagnosed me with somebody else. 

Andrew Schorr:

And the expectation would be, and I'm sure many people expect this, is if melanoma is going to come back and you had it on your skin, it's going to show up on your skin. 

T.J. Sharpe:

Yes. 

Andrew Schorr:

You expected that. 

T.J. Sharpe:

That's exactly what I expected.  I never would have imagined that the same melanoma was inside me for 12 years. 

Andrew Schorr:

All right.  Bad news.  Inside you.  How big was this tumor? 

T.J. Sharpe:

The biggest one was almost 9 centimeters right in my abdominal area.  There [were] also ones in both lungs, spleen and liver. 

Andrew Schorr:

All right.  How did you cope with that?  You had a new baby.  You maybe didn't—weren't sure you'd beaten melanoma, but you had gone on with your life, and then it just hits you like a ton of bricks. 

T.J. Sharpe:

It was difficult.  I knew that we had a pretty tough road ahead of us.  The first hospitalization was for 16 days, so there's a lot of time to start doing research and come up with a plan.  We visited our first oncologist who basically recommended the standard of care, dacarbazine (DTIC), and kind of said good luck.  When my wife asked him, you know, what's our prognosis he said, you'll be lucky to see him here in two years. 

And that wasn't going to be enough, so we ended up going okay, what's going to give me the best chance at a durable response?  You know, I told each oncologist I have a small family.  I have a young child who doesn't even know me.  Give me the best chance I could have for a long-term durable response. 

Andrew Schorr:

And what you did is you sought out a renowned melanoma specialist.  You went to a major cancer center, and ultimately you entered a clinical trial.  

T.J. Sharpe:

Yes. 

Andrew Schorr:

People don't know that much about clinical trials.  Why did you choose that?  People say, well, I don't want to be a guinea pig, give me what's proven, but you went the extra mile.  

T.J. Sharp:

Knowing that there was not a very high chance of a long-term survival with the current standard of care, at least with the current chemotherapies, we did our research.  You know, we have friends that helped us along the way that had either been involved in clinical trials or in the pharmaceutical industry, and to a person they said the most cutting?edge treatments will be in clinical trials. 

When you're a stage IV melanoma patient, you don't have a ton of options, and the ones that were available weren't exactly appealing to get that long?term durable response.  So we said, okay, let's try to find something that's as personalized as possible, that's going to give me a great chance of not just beating this—you know, keeping this off for a while but truly beating cancer. 

Andrew Schorr:

Now, let's tell a little more of the story.  You were in the trial, and it had some immunotherapy, which is really the new frontier for melanoma, and it did do some good for you but not as well as you'd hoped.  So ultimately you were in a second trial and different drug, different immunotherapy.  How has it worked out for you? 

T.J. Sharpe:

It's worked out fantastic.  Our scans are showing that there [are] still two small spots, but they're very small.  The drop in tumor burden was almost immediate.  You could actually see—on each gland on the side of my neck there were tumors, and you could see them shrinking in the first few weeks of the drug working.

Andrew Schorr:

Now, let's talk about that.  You've gone through a lot of treatment and surgery.  You had the surgery for the adrenal gland, laparoscopic, but you had a colostomy…

T.J. Sharpe:

Yes.

Andrew Schorr:

And now that's been reversed. 

T.J. Sharpe:

Yes. 

Andrew Schorr:

So you had your intestines back together. 

T.J. Sharpe:

Mm?hmm. 

Andrew Schorr:

And I understand you're just going on with your life, very devoted to other patients.  You do a blog.  You do yoga.  You're a former tight end, college football at Carnegie Mellon.  You're trying to go on with your life.  What would you say to other people about going on with your life? 

T.J. Sharpe:

The biggest thing is not to let cancer rule your life.  It's an important part, especially in an initial diagnosis when you don't know enough, when you're looking for answers.  Once you kind of get the plan you want to—do go in for and you find what you think the best treatment is for you, that you balance it. I think one of the things that we've learned is balance, whether it's diet or exercise or spending time with family and friends, that get into a little bit more of a balance is something that was really important to not just me but to my family. 

And a lot of the things that I thought were important the month before my diagnosis don't seem as important now.  You know, I take the time to take walks with my children or to go on a bike ride with them.  You know, my wife and I will go out on a small date night, you know, where, you know, as before there was so much busy in life that we didn't always take the time to appreciate each other, the beautiful place that we live, the small moments with our children. 

And just before I, you know, I flew out here for this interview, you know, my little girl was crying, I don't want you to leave, Daddy.  And, you know, maybe if that had been three years ago, I would have just said, hey, I have to go to work.  We have stuff to do.  You know, I took the time and lay with her and explained to her not just what I—where I was going but why I was going and how this is going to help other patients understand what they're going through and hopefully help some of them find the right treatments.

Andrew Schorr:

One last thing I want to talk to you about and that is things are changing in melanoma, not for everybody but for a lot of people.  That initial doctor said, well, maybe you'll live two years, and you're starting to beat that.  And you're looking at your 40th birthday coming up and hopefully starting to plan a little bit for the future.  

T.J. Sharpe:

Mm-hmm. 

Andrew Schorr:

Do you feel lucky that you're affected by this at a time where, in fact, things are changing?  ‘Cause I know the doctors are excited.  Are you excited? 

T.J. Sharp:

Absolutely.  I've said quite a few times if you're going to get melanoma this is the right time to get it.  I feel extremely blessed and fortunate that not only have I had my recurrence in a time where there [have] been significant breakthroughs, but I was also able to navigate to those.  And a significant number of patients still don't have the knowledge or the guidance to get themselves there. 

And part of what I try to do when I outreach to patients is let them know that there are significant, significant breakthroughs happening, you know, game-changing, different—difference makers in the oncology world and to make sure that they do the research and not just say, okay, my doctor told me I should do this, so let's do it. 

And that's an exciting thing, because I know there [have] been too many people I know that haven't won their battle. And to know this is going to make that number decrease and the number of people like me, you know, go up tremendously is a pretty neat thing to be involved in. 

Andrew Schorr:

Wow.  Well said.  T.J. Sharpe, all the best to you.  I hope we can talk again and maybe toss a football around. 

T.J. Sharpe:

Sounds good.  

Andrew Schorr:

Do yoga class together. 

T.J. Sharpe:

We can do that. 

Andrew Schorr:

Years from now.  Years from now, okay?

T.J. Sharpe:

I'm looking forward to it. 

Andrew Schorr:

And happy, an early happy 40th birthday, okay? 

T.J. Sharpe:

Thank you.  

Andrew Schorr:

All right.  Andrew Schorr with T.J. Sharpe, and really he's an inspiration to all of us as we see changes going on, fortunately, for people with advanced melanoma. 

Remember, knowledge can be the best medicine of all. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on July 18, 2017