A Survivor's Perspective: Melanoma

Paul Buchanan, A Survivor's Perspective:
Melanoma
December 26, 2010Welcome to Yale Cancer Center Answers with doctors Francine
Foss and Lynn Wilson.  I am Bruce Barber.  Dr. Foss is a
Professor of Medical Oncology and Dermatology, specializing in the
treatment of lymphomas.  Dr. Wilson is a Professor of
Therapeutic Radiology and an expert in the use of radiation to
treat lung cancers and cutaneous lymphomas.  If you would like
to join the conversation, you can contact the doctors
directly.  The address is canceranswers@yale.edu and
the phone number is 1-888-234-4YCC.  This evening, we continue
our series of survivor stories with guest-host Peter Lamothe, a
cancer survivor himself.  Peter's guest this week is Paul
Buchanan who was diagnosed twice with melanoma.Lamothe
Let's get started by having you tell us a little bit about your
cancer diagnosis?Buchanan
My original diagnosis, and I have been diagnosed with melanoma
twice, happened just over 15 years ago actually.  I was just
shy of 35 and I had what I thought was a mark on the back of my leg
and I did not really think too much about it, I thought it was a
wart actually. Finally, I ended up going to a dermatologist and had
it taken off, did not really think anything about it, did not know
anything about melanoma, had no concerns about it whatsoever,
received a call a couple days later informing me that it was
melanoma.  I really did not have a clue as to what melanoma
was at that point.  I do not think it was as prevalent or as
advertised then as it is today.  It was a bit of a
surprise.  I called one of my brothers and said, is melanoma a
bad thing? And he was like, are you kidding, it is definitely not a
good thing.Lamothe
And where were you living at that time?Buchanan
I was living in White Plains, New York.Lamothe
And you had family there?Buchanan
Yes, that's where I grew up, my whole family was there.Lamothe
What was your initial reaction when you got this news, besides
calling your brother?Buchanan
Lack of information was big.  I really knew nothing about
it.  I had people calling me within days of my diagnosis
telling me what they had read on the Internet and I went on and
looked at some stuff and I found out pretty quickly that I did not
want to look at the Internet to see what melanoma was all about,
because being diagnosed with melanoma, the prognosis was not very
good, and it was probably worse 15 years ago than it is today.Lamothe
Right!Buchanan
It was a shock.  I had been married for about two years at
this point and I still did not have any children, I still had a lot
to live for and was not really appreciative of being diagnosed with
it.2:40 into mp3 file 
http://yalecancercenter.org/podcast/dec2610-cancer-answers-buchanan.mp3Lamothe
When cancer patients are diagnosed, they often are surprised just
like you were, but after learning a little bit about the disease,
they learn that there are some signs that appear before diagnosis,
was there anything that you were able to connect dots in the months
leading up to and after the diagnosis?Buchanan
No, it was the fact that underneath that wart, was a mole.  It
was something I should have had taken care of probably two years
before.  It had grown to the point where it had grown deeper
into the skin and the chance that it had metastasized to my lymph
nodes, was pretty high.Lamothe
What were the next steps that you took after the diagnosis?Buchanan
Besides the panic, I immediately, the next morning, called my
doctor, my family doctor that I had gone to for a number of
years.  He recommended a surgeon in White Plains.  So I
went to Dr. Gordon, a great man, he did the surgery and ended up
finding out that the cancer had spread to a couple lymph nodes in
my groin, and then he immediately recommended I go down and talk to
folks at Sloan-Kettering and also at NYU, because
they were both currently running experimental programs.  I
ended up going to Sloan-Kettering.  The program was not
currently running.  They were going to start it up again in
January, this was September now, and they were running their
program starting it in January.  He did not give me a very
good prognosis either.  I wanted to know what my chances of
survival were and he was very blunt.  He told me to get my
affairs in order, and I probably did not have more than a year to
live.  I went down and visited Dr. Oratz down at NYU
and they had a program running and I asked the same question, not
that I had any other options at this point, but I answered the same
question, and she felt that I had better than 50-50 chance of
survival.Lamothe
So you went from getting your affairs in order, 50-50 survival, to
being here now, many years later, talking to us.  What
happened next, what type of treatments did you receive, what was
the course?Buchanan
It was an experimental program that they were running and I do not
know what the protocol was called, but I had to go down about every
three weeks, twice a week during that period, two successive days,
one to get injected in four different locations on my body, just
simple pricks under the skin with an injection of a vaccine that
they were working on that they thought would help, and then I had
to go down the next day to see what happened with the
treatment.  They did some measurements on the spot to see
where it was.  I went through that protocol for almost five
years, four-and-a-half years actually, and at the four-and-a-half
year mark, the FDA actually pulled the program.  So I never
really knew, and I was in the blind test, and so I did not know if
I was getting the vaccine or if I was not getting the vaccine.
After about a year or so, I called down there and actually spoke to
the woman who always checked me every morning and she said, Paul
you were definitely getting it, I can just tell, but I never heard
officially from anybody but I was very fortunate.  I never had
another sign of the cancer after that. There had been no spread on
any6:07 into mp3 file 
http://yalecancercenter.org/podcast/dec2610-cancer-answers-buchanan.mp3subsequent exams, scans, nothing for nine-and-a-half years.Lamothe
So after the diagnosis, your treatments begin, last a considerable
period of time, and at the same time you wanted to be living life
as normally as you could, can you say a little bit about how you
got on with your life?Buchanan
In the beginning it was hard, being, as I said, relatively young I
did not have any children, married for two years, trying to be
strong for my wife, for my mother, my brothers, my family, I
probably internalized a lot of stuff.  I was a sales guy on
the road a lot and I found that I did a lot of my thinking, and a
lot of my crying about it, when I was by myself, but over the
course of time, as the years went on, time went on, I never forgot
about it, never could because it was part of my life, but I moved
on.  It was still there, I still went religiously every six
months and then every year after five years for my scans and again
never had a sign, never had an issue, never had a problem.Lamothe
What did you tell your family and how do you think it affected
them? You did a lot of thinking and crying on your own but what do
you think their response was?Buchanan
My mom was a nurse for 40 years and she knew what the disease was
all about and I am sure she did not think I was going to make it
through it.  She always kept telling me, God only takes the
good people Paul, you do not have to worry about it, and it is
like, thanks mom!  I think everybody just kind of waits and
holds their breath.  I did not have any other outward signs,
nothing had ever happened again.  It was not as if every few
months they were taking stuff off of me and discovering things on
scans. My life went on.  It had to go on.  I tend not to
be the type of person that looks back.  I like to look ahead
to things that are going to come.Lamothe
Then after this you began to have a family and get on with your
career?Buchanan
We actually put it off.  After the initial diagnosis, we had
been trying, but when I was diagnosed we decided we would just
wait, and we waited a couple of years to make sure everything was
okay, and then we moved forward.Lamothe
And how old are your kids now?Buchanan
My daughter is 10 and my son is 8.Lamothe
That is terrific!  I know that you are a member of the
Melanoma Support Group at Yale and I want to talk a little bit
about that, how did you get involved with that?Buchanan
I am trying to think back to when it was.  I think Dr. Sznol
had mentioned it to me that they were looking at putting a group
together, and whether or not I would be interested in getting
involved, and I definitely was.  I was one of the charter
members and had gone to a number of the initial9:15 into mp3 file 
http://yalecancercenter.org/podcast/dec2610-cancer-answers-buchanan.mp3
 meetings.  It is a group where survivors and spouses, or
significant others, come together to sit and talk.  Whether it
is to openly discuss what issues you had, what problems you had,
what you were going through, or to see what other people's
experiences were, or even sit back and talk about other programs
that are going on whether it is at Yale, the NIH, or the University
of Pittsburgh.Lamothe
Did your wife attend with you?Buchanan
No.  My kids are relatively young and this is something that
they start at 6 o'clock, I believe it is, and runs until whenever
it is really over.  So that is time for my kids to get down to
either doing homework or getting ready for bed.  They have it
on Thursday nights.Lamothe
How do you feel that it benefitted you, personally?Buchanan
I have never had any issues talking about my disease and what has
happened in my life.  I have always felt that the more I get
it out, maybe if I can help one person, it would be worth it. 
I went there to help other people more than anything else.  My
wife thinks I am crazy, but this one I did not really internalize,
this last time I was diagnosed for the second time.  I just
felt I needed to talk about it from the onset and I did not
internalize it and I was very open and fair with my feelings and
letting people know and see it.Lamothe
I think that cancer survivors would agree that giving back, the
obligation of the cure is something you hear sometimes, to those
people who are going through cancer or who are having a difficult
time in survivorship is important.  What do you think that
through this group you were able to bring to individuals that were
having a difficult time or facing a somewhat uncertain future,
trying to make sense of the trauma that had visited their
lives.Buchanan
When people look at melanoma and they read everything about it on
the Internet, the prognosis usually is not very good and whether it
is me or some of the other folks that are in the group, being
survivors not just a year or two years, but long-term survivors, I
think helps them look at us and say, okay, I have hope.  That
is the big thing.Lamothe
Dr. Mario Sznol is the Co-Director of the Melanoma Program at
Yale.  So he sees patients and also conducts research in the
disease.  How did you get hooked in with him?Buchanan
By luck. I was actually going to see a Dr. Tansino at Mid-State,
and he had recommended Dr. Sznol the second time that I had been
diagnosed but for some reason, whether it was my insurance, there
was something going on, but he just could not get the appointment
with him for me, and then lo and behold when I became deathly ill,
we were able to get the appointment with him and came down and saw
him.Lamothe
And when was that?12:16 into mp3 file 
http://yalecancercenter.org/podcast/dec2610-cancer-answers-buchanan.mp3Buchanan
That was in September of 2005.Lamothe
How much time had elapsed between the first diagnosis and the
second?Buchanan
It was right at 10 years.Lamothe
What did you think when you were told the second time?Buchanan
When I was initially told I had a tumor that developed in leg, I
went through my scans, nothing popped up, I did not really think it
was much of anything, had the lump taken out in the same leg that I
had the original one, and it came back full-blown melanoma.  I
never really went into a panic thing, I just said, you know what,
my immune system has been good over the last 10 years; I will beat
this, I am confident I am going to beat it.  I will see what I
need to go through, what kind of protocols they are going to put me
through, but it rocked me.  I was at a sales meeting one week
giving a presentation and that following Monday I could barely get
out of bed, and the following Tuesday I was down
at Yale, almost two weeks after that sales meeting, I was down at
Yale barely able to walk or talk.Lamothe
What did you tell your kids? By this point you had two
children?Buchanan
They were young, three and six actually, and my son's birthday was
coming up.  They did not really know what was going on. 
The original sign that there was a problem was I had some real pain
in my back, serious pain in my back, so I went through chiropractic
care and physical therapy, and they just thought it was my
back.Lamothe
So they just thought dad was in some pain, he was not very, very
sick.Buchanan
Yeah, we were not going to spring that on them, and it was not
until a couple of years ago at Relay for Life which I have been
involved in with since my last diagnosis, and I was wearing the
purple shirt and my daughter kind of looks at me and goes, "Why are
you wearing a purple shirt daddy?"  I said, "Well, I have been
diagnosed with cancer twice," and she just was dumbfounded. 
She was shocked, and my son was there and he said, "Really?" And I
was like "Yeah."  So we talked a little bit about it, what the
realities of it were.Lamothe
Wow!  That is very powerful.  Let us come back to that
after we take a break.  We are going to take a short break now
for a medical minute.  Please, stay tuned to hear more about
Paul Buchanan's story of survivorship.Lamothe
Welcome back to Yale Cancer Center Answers.  This is Peter
Lamothe and I am joined today by Paul Buchanan and we are
discussing his story of survivorship.  Paul, before the break
we got into the beginning of your second diagnosis, and how you
came to know Dr. Mario Sznol at Yale.  Can you say a little
bit more about what the next steps were after this second diagnosis
and what happened?Buchanan
I became sick very quickly.  It was pretty dramatic. Over a
two-week span I went from being at a sales meeting, giving a
presentation, to being at a point where two weeks later I was at
Yale seeing Dr. Sznol, and he put me in the hospital that
day.  I had become so sick.  I could barely talk. 
When I walked I shuffled my feet, and that was the best I could do,
I could not really lift my feet, and he saw me and just kind of
looked at me at one point and said, we are putting you in today
because I want to treat you, but you are not strong enough to be
treated.  We need to get you stronger.  They put me into
Yale for, I think that was Tuesday and they let me out on Saturday
and their whole thing was to see if they could get me strong enough
to go through with the Interleukin-2 treatment.  I do not
think Dr. Sznol thought I was going to be strong enough to do
it.  I think my guardian angel at that point was Dr.
Kluger.  She came in, she had young children, and she had seen
my children and she looks at me and says, we are going to treat
you, I have made the decision and we are going to treat you, I just
have to go up and tell Dr. Sznol, and it was really because of her
that I went through the IL-2 treatment.  As I found out later
from Dr. Sznol, their choices were not too many for me.  It
was either IL-2 or put me into a hospice and
because they did not think that I would be strong enough for the
IL-2, he was leaning toward hospice.Lamothe
What was done to get you stronger so you could have the IL-2?Buchanan
Just get fluids into me, get fluids into me more than
anything.  I had become so dehydrated.  I really was not
eating anything.  They kept checking just to make sure I was
strong in my feet, my arms, it was kind of surreal.Lamothe
So you had a team of people here at Yale working with you?Buchanan
 Yeah, they were awesome.18:00 into mp3 file 
http://yalecancercenter.org/podcast/dec2610-cancer-answers-buchanan.mp3Lamothe      
 So you went on IL-2 and what happened?Buchanan
It was pretty amazing.  I felt like it was working almost
right away.Lamothe
How did you know that?Buchanan
The lump that they had taken out of my thigh a couple of months
earlier had come back.  It had grown pretty significantly
again and I was in bed, it was probably after my first or second
treatment of IL-2, and I just kind of reached down to my thigh and
it felt like it had gotten smaller.  I had some swelling,
things that happen because of the treatment, but it just felt like
it was smaller.  I will never forget, Dr. Tansino is the
doctor from up at Mid-State, and he came into my room on rounds one
morning and he just had a sad look on his face when he looked at
me.  I have seen him for about five years and I said, doc, I
think it is working, and you could just see the doubt in his mind
and I said, I am telling you, this lump is getting smaller, I think
it is working.  Nobody believed me, nobody could.  They
were still going through scans, still doing some stuff and they saw
the cancer was in my bone marrow.  There was cancer on the
spine, I was basically a mess, and then I got stronger over the
course of time, and I guess it was after my next round of
treatments which was probably late November, and I looked at Dr.
Sznol and said, I want to go through some physical therapy and he
kind of looked at me like, you want what?  I said, I have lost
all my muscle, there is nothing left of me, I had lost 50 pounds,
so I ended up doing it for a month, then had to go back in for
treatment again.Lamothe
So were you a physically fit, physically active guy before these
two episodes?Buchanan
I was when I was younger, more so, but it was just something I knew
I had to do for myself.  It was a choice, go home and lie in
bed, or get out of bed and go do something.Lamothe
I think that many cancer patients and survivors who are listening
to us are probably nodding their head saying, you know, I could
tell when it was working too, and it is hard for doctors, I think
they are of the mindset that they should be cautious and that is
great, it is good for us, but you know your body and you can tell
when something is working.  How long was it before the doctors
knew that it was working and that you were going to come out of
this?Buchanan
It was not until the end of January, that following year.  I
was feeling pretty good, and I went in to see Dr. Sznol. They gave
me between six and seven, maybe even an eight-week break in between
treatments with the IL-2 so you could get your body back going and
because it impacted so much, your liver, your kidneys etc.Lamothe
Say a little bit about that Paul, what is the impact after you have
your treatment, what are you feeling like, what are you doing?Buchanan
I was warned, Dr. Sznol obviously gives a warning, it is almost
like watching those commercials21:06 into mp3 file 
http://yalecancercenter.org/podcast/dec2610-cancer-answers-buchanan.mp3
 about prescription drugs where it is going to basically impact
everything and even give you psoriasis, and he told me there could
be a chance that I could be put into the ICU if it impacted my
liver, or kidneys.  They were basically drawing blood or
taking blood about every 15 minutes when I was in the hospital,
just to make sure everything was okay.Lamothe
What were the lengths of your hospital stays when you were being
treated with IL-2?Buchanan
There were four separate weeks that I was doing the treatment, and
I was in as long as my body could tolerate it.  For some, I
was in for five days, and I made about every treatment they wanted
to give me the second time.  I was in maybe for four days, and
then as I went for the third treatment and fourth treatment, my
body just could not deal with it, I do not think I was in for more
than two-and-a-half days.  He was hoping to get more out of
it, to pump more into me, but it just did not work out that way. I
went back in after that break, I went back in to see Dr. Sznol and
he kind of looked at me, and he said, we had a vote on whether or
not we were going to put you through another round of treatments
and he was not sure another round was going to be helpful or not,
but he said they were going to put me through another round. 
I said, oh please, please do not.  I was kind of begging
him.  Here I was feeling good, I knew it was working, I knew
it had worked, and I was begging them not to put me through it
again, because IL-2, when they give it to you, as you start to feel
a little better, going in for the IL-2 treatment just tore you
down.  It tore me up pretty bad to the point that after being
in there, it would be about a week before I would actually be
moving and doing the things I needed to do.  He said well, we
went to vote on it and we are going to put you through another
round, and he said he voted not to, and I said, well that is good
enough for me, and he kind of laughed.  He said, tell you
what, you go through your scans again and we'll do another
bone marrow biopsy, and if you are clean, we won't do another round
of treatments.  I asked him what the odds were of that, and he
said, not very good.  So I did my stuff, went down to see Dr.
Sznol, sat waiting for him, and he came in and said, I cannot
believe it, there is no sign of cancer in your body at all. 
With my first bore marrow biopsy, the lab first diagnosed me with
myeloma, and Dr. Sznol said no way, we know it is melanoma. 
The lab came back and said, you are right and he does not have any
bone marrow left, it is 100% tumor.  So I went basically from,
my bone marrow being 100% tumor to not having anything in me five
months later.Lamothe
Two-time cancer survivor, two pretty harrowing experiences with a
period of time between each of them where you had children and
moved on with your career and your life, but coming out of cancer
the second time, how is it different and how are you living your
life differently now as a result of these two profound cancer
experiences?Buchanan
People go through it in different ways.  You read a lot of
stuff about people having that epiphany where they saw something
and they went on to do things.  For me, I had a young family,
I had to get back to work, I was back working a month later,
traveling, and doing the things I needed to do to support my
family.  It is going to be a part of my life, it will be a
part of me forever, it will be a part of my children forever too
because now we have to watch and make sure they do not go through
the same thing I went through.  I am not sure that a change
for me has been as profound,24:55 into mp3 file 
http://yalecancercenter.org/podcast/dec2610-cancer-answers-buchanan.mp3
 maybe as it has been for other people.  I just want to live
everyday and make it through and do what I need to do.Lamothe
What do you say then Paul to other people who have gone through
this experience, people you talk to in the Support Group or people
who are listening now at home, driving their car, what do you say
to them?Buchanan
I wish I had known more about melanoma the first time around, and I
would not have had to have gone through the experiences I had gone
through.  If there is a strange mole, even if you do not think
it is a strange mole, go have it checked, go see a doctor just to
have something looked at is not a big deal, and it could save your
life.  Not only can it save your life, it could save you a lot
of heartache, a lot of trouble, a lot of issues going forward, and
listen to the doctors.  There is a lot of stuff out on the
Internet, different treatments, different places, and I just put my
faith in the doctors, put my faith in God, that I was going to get
through it and that is what I did.  That is what I needed to
do, especially the second time around.Lamothe
It sounds like you also had a close-knit supportive group of people
around you who helped you with your cancer, but also just helped
you with who you were.  I am sure you did not talk about
cancer all the time when you got together with your buddies or your
family and we know how profoundly the cancer impacts the patient,
but it also has an impact on their family, their friends, their
coworkers, their neighbors, and many people believe that they need
certain levels and types of support too.  Say a little bit
about your own personal experience with your family and
friends.Buchanan
I think it is harder on the family than it is on the patient. 
After my first round of treatments I had been told pretty bluntly
that if the melanoma ever came back, I probably would not survive
it, and when it came back so fiercely I got to a point where I kind
of figured I was going to die, and I was okay with it. I did not
want to die, but I was okay with it, but you know I had a
79-year-old mother who came up to help us; one of my brothers came
up and lived with us.  I had my two children, I did not want
to die, but you could see the impact that it had
on the people that knew what was going on around you.  No
parent wants to see a child die before them, ever, nor does a
brother, or a wife, friends, or anybody else.  We had only
lived in our neighborhood just over three years.  It was a new
neighborhood.  It was a new development, and people really
came together, it was unbelievable.  There was stuff that
needed to be done, whether it was mowing the lawn, cutting the
bushes or hedges and I had friends that came over and did
everything that they could.  They supported my wife, helped
with kids, cause their life had to go on, just because I was sick
did not mean that they were not going to swimming practice or they
were not going to go to the YMCA for their programs there. 
They needed to stay focused and stay level with their life, and I
always felt it was harder for them than it was for me, to watch me
go from where I was a very healthy 45-year-old man to having lost
50 pounds and was not even an image of my former self.Lamothe
Paul, we have just about a minute left, and this is kind of a
difficult question to answer, because28:36 into mp3 file 
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 this could be answered in so many different ways, but if you could
say something to cancer, what would you say?Buchanan
From my own experience, I kind of look at it and say, if it is
going to come again, just bring it on, I will deal with it.  I
think we all need to deal with it.  It is never going to be
easy.  The diagnosis is not going to be easy.  The
treatment more than likely is not going to be easy, and as you move
forward, it is going to be difficult for everybody.  I would
like it to just go away, go away, and leave us alone.Paul Buchanan and Peter Lamothe are cancer survivors. 
If you have questions or would like to share your comments, visit
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transcripts of past programs.  I am Bruce Barber and you are
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