Monthly Archives: September 2011

Let me introduce: Evan

Posted on September 26, 2011 | 14 comments

Picture taken of my girlfriend (Anne) and I in Vail. March 2010.

My name is Evan Spirito. I am 24 years old and I have NSCLC driven by a mutation in my ALK gene. I was diagnosed in January of 2009 when I was 21.

The cancer originated in my left lung and, by the time I was diagnosed, it spread to my lymph nodes as well as a couple brain metastases. I had the brain mets “zapped” right away with proton beam radiation and then I started chemotherapy. I experienced good results on the Patel Regimen (Carboplatin/Alimta/Avastin) for 6 cycles and then remained on maintenance chemo for several months following. Unfortunately, my cancer started to come back in the spring of 2010.

The results of my genetic testing came back in the meantime and confirmed that my cancer was driven by the ALK mutation. I was put on the Crizotinib trial and again experienced good results with very little side effects. I stayed on the trial for about a year before my cancer once again showed progression in the spring (March 2011).

I started on the STA9090 trial next, however, it proved to be largely ineffective on my disease with the addition of nearly intolerable side effects. After about a month “wash out” period, I began my latest and current trial (LDK 378).

Linnea and I share the same oncologist (Dr. Shaw). She reached out to me a few weeks ago and we discovered that we had quite similar experiences/treatments in our individual battles with cancer. Linnea was about to start the LDK trial herself and, as far as I know, we are two of only a handful of patients currently on the trial.

I know that the many patients are hoping to join the trial soon and looking for more information on what to expect, so, I wanted to share my experience thus far on the LDK trial:

The trial is comparable to my experience on Crizotinib, which was the best/easiest treatment I’ve had to date. The first couple visits are quite long (as Linnea described in her latest post) but after that it gets better. You will dose once a day and go in once a week for lab work and a check up. I have not seen any noticeable side effects from taking the pill apart from one vomited dose in the first week.

For me, the most annoying part of the trial is the eating requirements. Fasting for 2hrs before and after dosing is no fun but if you work out a consistent schedule it will not be an issue. I tried, and may try again, dosing right when I woke up (before eating), then going back to bed for 2hrs before eating breakfast. If your stomach can manage, it might be worth a try.

In my case, it took a solid 7-10 days before I really began to feel the pill working. Sure enough, my first set of scans revealed a major decrease in my disease, which is very encouraging. Things were going rather smoothly until I suffered a minor set back in the form of a chest infection, but with any luck the antibiotics should take care of that and hopefully I’ll be back on track in another week or so.

While being treated for the infection, Dr. Shaw did notice “slight progression” in my disease; however, not enough to take me off the LDK trial. So, as of right now I will continue with the trial for as long as its continues to keep the cancer down.

I hope this little bit of information helps but I’m also aware that every situation is different. As always, take it one day at a time, focus on what’s important going forward, believe in the treatment and it will work!

Evan is an incredibly brave and strong young man (yes, you can get lung cancer when you are only twenty-one).  As the LDK378 trial is yet so nascent, there is very little in the way of anecdotal informational provided by actual participants.  He was kind enough not only to agree to meet me but to generously share his own experience thus far here. Hopefully it will prove useful to other ALK ‘mutants’ who may be considering the LDK trial.

Thanks Evan!

14 Comments

Posted in ALK mutations, clinical trial, Coping, lung cancer survivor, positive attitude and lung cancer

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Let’s ride

Posted on September 21, 2011 | 9 comments

Ok. So. About that LDK378 trial…The gallery above is from my first day two weeks ago. Please note the woodchuck.  And Sarah, giving me the high five after my lead-in dose.  And how tired David looks; it was a very long day. Long enough that I had time to wander the halls, peruse the Wall of Hope and hang out in the lovely Healing Garden. Long enough that it was barely light when we left the house and quite dark when we returned home.

I’m going to directly lift from the Research Consent Form (a many paged document that you must read and sign prior to enrollment in a trial) to describe the specifics of day one:

PK run-in period (3days) in Part 1 of the study 

Pharmacokinetics (PK) is the study of the actions of a drug in the body over a period of time (eg, how it is absorbed, distributed, broken down, and excreted).

The PK run-in is a 3 day period (before you begin daily study treatment with LDK378) where you will be given a single dose of LDK378 and then have repeated blood tests to see how your body handles the drug. (The tests are called pharmacokinetics or PK tests.) About 1/3 teaspoon of blood with be drawn at each PK blood draw.

  • Day one of PK run-in:  You will have blood drawn, take one dose of LDK378, and then have blood drawn 7 more times with the 8 hours after taking LDK378.
  • Procedures performed on Day 1 of the PK run-in:
  • Physical examination
  • Vital signs
  • In addition, blood pressure and heart rate will be measured before every PK blood sample is drawn.
  • 3 consecutive  EKGS after the single dose of LDK378 and another EKG 4 hours after the dose of LDK378.
  • Additional blood for research blood test to measure biomarkers and the amount of circulating tumor cells in your blood (about 4 teaspoons). Biomarkers are substances such as proteins that may give information about how LDK378 is affecting your body.

So that is the technical run-down. In reality, it all felt rather festive.  Just as my t-shirt proclaimed, this wasn’t my first rodeo and I kind of knew what to expect. 

Not long after the first dose, I experienced some cramping and Irene performed anti-diarrhea acupuncture. That was it for drama; no other discernible side effects. 

Wouldn’t it be wonderful if my personal history of lung cancer treatments someday represented the paradigm; thus far, they have only gotten easier and become more effective.

Consider: almost immediately following my diagnosis in 2005, I endured a rather brutal lower left lobectomy. That was followed by four grueling sessions of cisplatin and taxotere. In 2008 I spent two months taking tarceva with all of the side effects and none of the benefits.

And then came crizotinib (now Xalkori). Not only were the side effects minimal, it stamped out the cancer raging in my lungs and kept it at a low smolder for almost three years.

Will the LDK378 do the same? I am hopeful. The day after my lead-in dose, I was able to walk to the top of a steep hill without stopping numerous times to catch my breath; something I’d not been able to do for some time now. I felt great.

And then, I started to feel crappy again. Which is part of why I haven’t written yet.

However, before any conclusions are leapt to, I need to add that there were several extenuating circumstances. Two weeks before my lead-in dose, I had been on a ten day course of levaquin for a sinus infection. It was the first time I’d had antibiotics in months, and a curious thing happened.

The cough and accompanying rattle in my lungs, which had persisted almost since my bout with the flu, disappeared. I had assumed both symptoms were due to the progression of my lung cancer and was actually quite startled when they cleared up.

My lead-in dose was on a Wednesday, and I didn’t have another dose (the start of continual dosing) until the following Monday. In the meantime, the feeling of low level crappy returned; aches, chills, fatigue and a cough. What the hey!

Several months ago I found an imbedded deer tick but in subsequent days did not develop a bullseye rash. However, just to rule out lymes disease as a potential cause of my current symptoms, I was tested. In addition, my circulating hormone levels and thyroid were checked; all three were normal. Alice (Dr. Shaw) called on Sunday to see how I was feeling and mentioned that the pre trial PET scan had shown more uptake in my lungs than she had anticipated.We discussed the possibility of a smoldering low level pneumonia, as areas of inflammation can light up a PET scan and be confused with cancer. Finally, yesterday I saw the ENT to rule out a lingering sinus infection. My nasal passages were clear, but we decided it might be smart to go back on another ten days of levaquin and see what happens.

So here’s hoping. The side effects from the LDK378 would seem to be non-existent. If the antibiotics do their magic, perhaps I can really get back in the saddle again. I am so ready.

9 Comments

Posted in ALK mutations, clinical trial, LDK378

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Before moving on down the trail…

Posted on September 15, 2011 | 8 comments

Time to tell my tale. It begins with a prelude: a couple of weeks ago I received an unexpected parcel from California. Inside were some fresh coffee beans from Peets as well as an assortment of other gourmet goodies, and a woodchuck (aka: groundhog, land-beaver, whistle-pig). Or, rather, a plush woodchuck puppet. The senders were my friends Leslie and Rob. I met Leslie last spring at the National Lung Cancer Partnership Advocacy Summit. We discovered that her husband Rob and I shared a diagnosis of NSCLC as well as an ALK mutation. Some weeks later, I was able to make Rob’s acquaintance when he and Leslie came to the Boston for a second opinion regarding his treatment. We all went out to lunch (Rob’s sister joined us), and it quickly became apparent that the four of us had so much else in common and a friendship was born.

Well, much as I have my white circles, my eleven elevens, my lucky charm and other talismans, Rob and Leslie have a woodchuck. It is an old family tradition (with perhaps just a bit of cheek) to point the woodchuck in the direction of those needing a dose of good fortune. They decided it was time for me to have my very own woodchuck. I’ll introduce him soon. But first, a picture Leslie took of Rob and his whistle pig (who seems to be partaking of a bit of infusion):

Here's looking at you, Rob!

 

 

 

 

 

 

 

 

 

 

 

 

Leslie and Rob write a blog together which can be found at:

http://rkmoore.wordpress.com/

It is illustrated with Leslie’s amazing photos and is a diary of Rob’s diagnosis and treatment as well as a glimpse of their full and adventurous lives. The blog is generous, smart and so much fun; just like Rob and Leslie.

8 Comments

Posted in ALK mutations, Attitude

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Saddle up

Posted on September 11, 2011 | 9 comments

THIS AIN'T MY FIRST RODEO

 

Wednesday morning, September 7th. Lead in dose of LDK 378 and dressed for success.

It was a long day (eleven hours not including the commute), but went quite well. Per trial protocol, I returned to MGH Thursday, Friday and Saturday morning for PK’s and blood draws. After a day off, I’ll be back again bright and early tomorrow to begin regular dosing.

I’m going to fill in the blanks, but not tonight. This tuckered cowboy is hitting the sack.

9 Comments

Posted in clinical trial, Treatment

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A poem by my friend Sarah Broom

Posted on September 6, 2011 | 17 comments

I have a friend named Sarah Broom who is also ALK positive and battling stage four lung cancer. She lives in New Zealand and is the mother of three boys and a fine poet. Her diagnosis came just before the delivery of her third child, and somehow, someway, she has managed in the time since to complete and publish a beautiful book of poetry. Quite a few of the poems reflect on her illness, and this particular piece regarding motherhood got me right in my heart. Sarah was kind enough to have her publisher authorize reproduction here:

because
the
world
can
do
that
to
you
 

 

 
and
if
the
world
did
do
that
to
you,
 
and
took
me
from
you,
before
the
time
 
was
true
and
right
and
before
we
all
had
time
 
to
see
the
things
and
do
the
things
and
tell
 
the
things
we
need
to
tell,
to
see,
to
do,
 
so
many
things
I
cannot
even
imagine
them

 
because
you
are
only
six,
 
and
your
mind
is
crowded
with
soccer
and
cricket
 
and
deep‐sea
life,
with
knights
and
Narnia
 
and
the
thermohaline
conveyor,
and
when
you
were
five
 
you
cried
inconsolably
for
forty‐five
minutes
 
when
the
All
Blacks
lost,
and
already
when
you
read
 
you
cannot
hear
my
voice,
and
you
are
fierce
 
and
deep
and
I
am
afraid
for
you

 
and
because
you
are
only
two
and
three‐quarters
 
and
your
heart
is
full
of
trains
and
racing
cars
 
and
tigers
and
Tiggers
and
dinosaurs,
and
when
 
you
jump
into
the
pool
with
your
water‐wings
on
 
your
face
explodes
with
surprise
and
joy,
every
 
single
time,
and
you
are
tough
and
resilient
 
and
cheeky
as
hell
but
you
still
need
to
know
 
where
I
am,
about
every
three
minutes

 
and
because
you
are
only
nearly
one
and
your
mind
 
is
full
of
god
knows
what
–
sticky
things,
shiny
things,
 
soft
things,
loud
things,
faces
and
brothers
and
chuckles
 
and
screams,
and
every
time
you
lie
drinking
 
your
bottle
by
yourself
I
think
of
all
the
times
 
I
wasn’t
there,
of
how
they
rushed
you
into
life
 
like
there
wasn’t
enough
time
in
the
world,

 
which
there
isn’t,
sometimes

 
so
if
the
world
did
do
that
to
you
 
and
took
me
from
you,
before
the
time
 
was
true
and
right
and
before
we
all
had
time
 
to
do
the
things
we
need
to
do,
to
fight
more
 
and
laugh
more
and
be
bored
together
 
over
and
over,
to
ease
into
the
big
questions
 
slowly,
not
all
at
once,
not
like
that,
 


like
a
trapdoor
opening
up
 
under
your
feet
 
and
a
sickening
drop

 
but
if
the
world
did
do
that
to
you,

 
I
have
to
think
that
you
would
be

 
all
right

 
after
all

 


 
Tigers
at
Awhitu,
(Manchester:
Carcanet
Press,
2010).
Included
here
with
the
permission
of
the
author
and
the
publisher,
not
for
reproduction.


17 Comments

Posted in Parenting with cancer

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FDA approval for crizotinib and a new name: Xalkori

Posted on September 1, 2011 | 33 comments

On Friday, August 26th; crizotinib received FDA approval. It is now called Xalkori. Nice little features on both the ABC  (scroll down to find Xalkori) and NBC evening news a couple of nights ago. That’s my oncologist/goddess Dr. Alice Shaw providing commentary, and in the NBC piece, the images of the before and after chest CT scans are my lungs (an online friend recognized them and emailed me!). They do get around (my lungs and Alice).

I should also mention that there was a story about Pfizer’s coup in the Wall Street Journal on Tuesday with a picture of and a few quotes from yours truly. My Dad Ollie, who read the WSJ faithfully, would have been pleased to see me there.

I’ve noticed some criticism on the blogsphere, as Xalkori comes with a hefty monthly price tag ($9600), but Pfizer has taken steps to provide financial aid for those who need it. Also called out has been the fact that only 4-6% (or according to this latest data, almost 10%) of people with NSCLC have a mutation of the ALK gene. However, there are so many cases of lung cancer world wide (according to WHO, 1.4 million deaths yearly from lung cancer), that when you do the math, it is a truly significant number of patients who shall potentially benefit.

So yes, Xalcori is big news for Pfizer as well as those of us with lung cancer and the FDA is to be applauded for streamlining the often ponderous approval process.

And now, on a more personal level; what’s up with me.

On August 19th I took my final dose of crizotinib (Xalkori). I am now ‘washing out’ in preparation for my next party trick (make that a miracle). Yesterday I peed in a cup, had bloodwork, a physical, an EKG, a chest and abdominal CT (with contrast–blech) and a PET scan as well. I was given one of those nifty cards identifying me as residually radioactive for 24 hours (just in case I encountered someone with a geiger counter).

I am scheduled for my lead in dose of LDK378 next Wednesday and that’s when the circus really starts.

In the meantime, I am feeling pretty crappy. I saw Alice (Dr. Shaw) yesterday, and she thinks that quite probably, the crizotinib was still conferring some protection, which is good news if in the future we want to add it to my arsenal again. Now that I’m off treatment, my energy level has really dipped and my shortness of breath is catching up to me. Today I made myself go on a walk, as I’ve been breaking my own rules lately (never stop moving). It was also Peter’s first day at the Academy, and he’s going to require a lot of support as he adjusts to a very rigorous academic schedule, so I’ve got to stay on my toes.

What can I say? It is a stressful time for all of us, but we are doing our best to stay positive and hopeful. Because that’s how it’s got to be.

33 Comments

Posted in clinical trial, genetic testing, Media, personalized cancer care, targeted therapies

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