Going in for my one-week check up under the new treatment. I hit the jackpot when they approved me for the latest clinical trail TPX-0005, the latest in TKIs to help combat lung cancer with a ROS-1 mutation. Tailored made for yours truly and a very much coveted medication among the cancer community.
1 in 312 are great odds!
To say that I am a lucky MoFo is an understatement. This clinical trail is open to only 312 worldwide participants in 12 hospitals stretching across the US, Europe and Korea, however this is only Phase ll of this study and it comes with its own unique side effects. Bearable at the moment, yet already better than the previous drug.
312 in the World!
I like my new team. Dr. Zhu is a specialist in treating ROS-1 cancer patients and has been at the forefront of many cancer clinical trails. I got to know of her from the ROS-1 Facebook group that I belong to. It's a great forum where other patients bearing this mutation can exchange info and support each other. You never feel alone when you exchange with other members, plus I feel like a big dog when I post there seeing as I'm one of the very few participating in TPX-0005.
Super Private FB group. We even have a secret handshake.
It's funny how this is all wrapped up in my life's goal now. Ten years ago I would never of thought something like this would be a defining part of my life, and now I'm solely depending on this to help heal me or at least grant me a few more years of solid life. Sigh, it's still quite a mind-fuck if you really think about it, but I am very grateful.
This is my favorite rendition of this particular song. Not only is it refreshing, but the upbeat rhythm just raises my spirits. I always put it on when I need a jolt of Bossa Nova to get my groove back. That being said, here's today's post:
Wow!
My last blog post was a real Debbie Downer. I didn't mean to fret with my on-goings, but the need to vent was quite palpable. Especially after the latest fiasco pertaining to my diagnosis. The issue that bothers me the most is not necessarily the cancer itself, but in the ongoing erosion of trust in my medical team. Cancer can be quite the art to master in its management, but several times there have been mis-readings which have caused a push back on receiving proper treatment within a timely basis. Since the first day I complained to my Primary Care Physician about a wheezy cough in my lung (September 2015) it's been one missed call after another. First he said it was the flu and then asthma. Four months later I consulted when I had a pain in my hip that he diagnosed as arthritis (the tumor was starting to spread). Then shit got real for both of us when I started coughing up blood. He finally ordered an X-ray in May 2016. A FULL NINE MONTHS from my initial consultation.
Could've used the time better
I've been consulting with this MoFo for 16 years, acing annual physicals every time. And yet he didn't catch any symptom nor medical issue. Or even bother to think proactively and order the x-ray from the get-go. It's a hard pill to swallow when I think about it. Now, figure how I was feeling the past 12 months. Cancer patients put their whole trust in medical professionals and count on every word they utter, yet it is very disconcerting when we realize that they are human and as such, prone to make mistakes. This is a hard concept to accept.
waka-waka-waka! (^Sicko)
But it is what it is and I must continue to play with the hand I was dealt. And in spite of "whatever remaining years" I have left I do need to make them the best that I can. Especially for my wife and two lovely daughters. I can be quite the pain-in-the-ass on a normal day. Imagine when I'm hopped up on steroids and cancer-meds...
adorable
So, I will adjust my little blog to reflect on the cool vibes going on in my life. A testament of sorts, written by a man who wishes to be remembered kindly. I'll sprinkle some fun bio-facts here and there, but do reserve the right to bitch about certain stuff when applicable.
I'll do my best, promise.
Speaking of a clear day: My latest PET scan showed ongoing healing in the main lung tumor as it continues to decrease in size & activity. The hip bone and other lesions are also showing major healing which pretty much indicates that the Lorbrena is working, but only from the neck down. I still have the issue in my noggin' to deal with, but this is already a huge score! And a huge weight off my shoulders. I'll know more next week when I meet with the UCI Irvine team.
8:30 AM - November 11, 2019. I'm currently sitting in the Radiation waiting room at Cedars Sinai, a place I used to call home. It's been one year since the last time I saw my Oncologist here who at that time recommended participating in a new clinical trail for a medication that treats the brain. And boy has it been a wild year.
From the get-go (October 2018) I was told that the metabolic activity in my lungs had increased, and that there was new activity in my brain. Of course, there is the caveat that these could only be "suspicious" in nature, but everyone felt it was best to jump with the clinical team running the Lorbrena trails. So, I gained a new lover in this cancer research broo-haha by becoming a guinea-pig
for Pfizer in the attempt of regulating dosages and their unique side-effects. I've written about these in previous posts (highly suggested reading) and will disregard here, but what I would like to outline is the stress in dealing with the current state of the medical industry when dealing with a catastrophic disease.
Is he an HMO or PPO?
About 3 months into the trail (January 2019) I got a PET scan and Brain MRI to see how things were coming along. Well, as my previous Oncologist said: "Fuck...", there was apparent increase of metabolic activity in my lung and apparent progression in my brain (see post about that visit here). A bummer to say the least, BUT after reviewing my scan for a 2nd opinion the results were deemed otherwise: the tumors were responding to the drug, although not as fast. Still, a small decrease is better that any increase. Effectively, I fired my Oncologist (who, as a matter of fact is the big Lung Cancer honcho at Cedars Sinai that treated Valerie Harper.) and officially hired the Oncologist that was running the Lorbrena trail, all the way in Huntington Beach.
Pretty much how it went down.
Things were coming along swell with the whole experience, mind the ongoing side-effects and two hour commute. But shit, that's what podcasts are for. Still, it became a grueling pain in the cornholio to travel that long to each appointment. My blood pressure never seemed to be at a resting state since I usually would run into the office, having arrived a few minutes late due to traffic. But the moment of truth came in May 2019 when another PET/MRI were scheduled at two new facilities: One in Newport, the other in Aliso Viejo (JOY).
My Cancer Network
The results from those MAY scans were the least I expected. The lung was stable, but the brain tumor had apparently increased in size AND there were TWO NEW TUMORS.What the flick...
Just wait til you get older kid...
I thought the Lorbrena was supposed to treat the Brain tumors along with the body, but there was apparent resistance. However the Oncologist decided to continue with the Lorbrena treatment and scheduled another Brain MRI in August 2019 to rule out a false-positive. He also referred me to a specialist at UCI (Irvine) that deals with my particular type of mutation: ROS 1.
UCI Irvine is great. They have a good success rate with their trails and have a vast network of medical resources and such. After initial consultation I was placed on their list of upcoming trails and was told to stay the course.
THAT IS UNTIL the results of the August 2019 Brain MRI were not good. The original tumor showed ONGOING growth, plus now there were THREE NEW TUMORS.What the fucketity fuck fuck!
Yep. I've given my tumors Christian, er... Jewish names.
Hence, my Oncologist scheduled a consultation to a Radiation Tech and Neurosurgeon stat. These were within the HOAG medical network located in Newport. Joy of all fucking joys, I was about to enter a whole new system of radiation treatment, plus Gamma Knife that would "cut" these god-damned tumors out of my noggin'. Holy Shit says I, while peering into the abyss of unknown ground.
By this time, I had already consulted with my trusted 2nd opinion Onc AND with the UCI specialist. And while they both agreed that the scans looked suspicious they deemed that not much difference can be seen compared to the scan from January 2019. (Confused yet?).
Two chicks at the same time.
I finally met with the Neurosurgeon in August 2019 to discuss the upcoming slice n' dice session to scoop out these little fuckers, but to keep the meeting short he ultimately said that there was, in fact, NO NEW TUMORS and that the suspected growth on the original tumor was inflammation. In essence, that this tumor was bloated because it was dying.
Going on in my brain. RIGHT NOW!!!
I was ecstatic when the Neurosurgeon said no surgery/radiation needed for the moment. But this joy just turned into despair as I thought of all the misreads and misdirection laid out in the past 7 months. I got confused, and angry.
After this massive clusterfuck with HOAG medical group I decided to go back to the original Ceders Sinai Radiation Oncologist to get his opinion on these latest scans. After reviewing he felt that there was indeed suspicious activity and suggested getting a new MRI to be scheduled two months from then.
I got scanned last week.
It's now 11:30 am and I've left Cedars Sinai where they gave me the results of my last Brain MRI (November 2019), and unfortunately they were not good for reals this time. It seems all the tumors that were once "suspicious" are now "facts". Three "facts" as a matter of fa... fuck.
They are tiny, but enough to warrant the need to treat with Radiation Surgery. However, there are newer clinical trails that I may be able to participate in, but the caveat is that I cannot have any type of Radiation treatment beforehand. Big Pharma is pretty particular about her clinical trails, so I'm at a sweet-spot for the moment to determine what step would be best.
My current treatment is $17,000 per month. True.
But all is not dire. My type of cancer is (thankfully) not as aggressive, so I have a tiny bit of wiggle room to investigate the best alternative. But fuck if I don't feel deep down defeated. I was really hoping this whole experience with Lorbrena would ultimately pay off. Fucking Sigh...
So, here I am. Happy with alternatives, but confused, disappointed, angry, and feeling the need to grasp for something no longer there: The gentle trust in the Universe. In God. In whatever the fuck I used to believe in. I've become bitter towards the things that used to bring me comfort. Even my own artistic spirit.
There's been a lot of ups & downs since I last wrote on this blog:
New meds, new scans, new results, new fears, and much more new joys.
And as I look back at the path I've experienced these past 3 years I can't help but think of how fast time flies. My oldest daughter will attend 2nd grade in a few weeks and my youngest will turn 4. This is beyond what I thought I'd experience when I was originally diagnosed, and it is pure joy to know that I am here, healthy, and in good spirits.
Quihubole Bueyes!
Since the beginning of 2019 I've been on a clinical trail for a cancer drug that acts as an inhibitor called Lorlatinib. What is does is block a particular enzyme from working and slows the growth of cancer cells. This is very much the same way Xalkori worked (the previous drug I was taking), with the exception that Lorlatinib crosses the "brain-body" threshold. This is important since 4th Stage Lung Cancer patients tend to get tumor spread into the brain (as I did in Nov 2017). And this has brought on some very unique side effects (explained further below).
An Overview. While I underwent standard Chemotherapy in 2016 I lost 25 lbs. Man, I was in a quasi-happy/sad state where it was nice to see a thinner me, yet feeling awful with all those drugs circulating in my veins. But, I went ahead and bought new clothing thinking I would never gain it back.
at los pinches outlets
UNTIL!
I got the brain tumors. My Dr had me take the dreaded Dexamethasone, a steroid to help reduce brain swelling. This fucking drug had me go raving mad. The side effects: my joints ached, I couldn't walk one flight of stairs, and I gained 20 lbs in one month. It was crazy. Next, the Xalkori side effects: an itchy rash, double vision, fatigue and weakness, and sleight weight stability due to the heavy chorro sessions.
chorro galore
And then came Lorlatinib.
My new girlfriend
My oncologist had recommended that I join this clinical trail back in Nov 2018, as he felt it would be important to get a treatment that would also affect the brain. After beginning, nothing was really noticeable at first regarding side effects other that the typical rash, headache, and other physiological effects. However, in a few weeks I noticed my head began buzzing with thoughts. It was as if my mind was on a conveyor belt, running thoughts and pictures constantly. I couldn't fall asleep. I'd close my eyes and my head would quickly fill up with images. Some fun, some scary. Some very scary...
"Do you mind if we dance wif yo' dates?"
Another side effect I've experienced was a change to my cognitive thinking. An example:
I was presenting a topic about Animation history to my colleagues at work. A subject I am well versed in and had an hour's worth of prepped material to show. I was feeling confident in my subject, but all of a sudden my mind went blank and felt a sudden numbness. Panic attack? Not really. Most of you that know me closely know that I am a big boaster with a personality that can outshine the sun. In addition, I've presented similar material in many classrooms, pitch sessions, and animation studios. This was not your typical "fear of public speaking". This was different. I couldn't express myself and just sat there showing cartoons on the screen to a dumbfounded audience.
On another frightening moment, it was late night and we were putting the kids to bed when a small argument ensued regarding homework. It escalated to a boiling point where I reached an emotional numbness to where all I could not recognize my family, yet I was able to perceive the four of us in our "raw" form... What I mean is that in-my-mind's eye we shed our human selves and exposed was the raw material from which everything is composed in the universe. A hallucination perhaps, but in that brief moment we were equals (not parent-child). Pure spirits in a debate about simple homework duties...
^this X 4
Ok, I know what you're thinking. WHAT THE FUCK is this guy talking about? Even I was confused by all this back then. But I realize NOW that as my body was getting used to this new clinical trail so was my brain. After years of having my body subjected to chemotherapy, immunotherapy, radiation (lung, hip, brain), Targeted Treatment, Meds to treat other shit, et al. THIS WAS THE FIRST TIME I was taking an anti-cancer drug that is specifically designed to treat the brain, and it has manifested itself greatly.
I feel like I've had more spirit animals than Elvis, Jesus, and The Beatles combined.
These particular side effects were unknown at the time, and some patients needed to stop the treatment due to this. I communicated my experience to the clinical trail team to which they took note. They were especially interested in seeing how I coped with this cognitive-thinking aspect of the drug since I was "able to get a handle" on it.
That story is much deeper to tell later. For now I am happy to report that the FDA finally approved this drug, now christened as LOBRENA, with the added side effect of:
• euphoria
• mania
• mood swings
• personality changes
• weight gain (extra 15 lbs, but better than 6 ft under)
I believe in the power of prayer. I know the power of love. I've
experienced the power of kindness.
In 2016 when I started chemo I began a tradition of
grabbing a rose from the many flower arrangements that decorate the lobby of
the cancer center. A pseudo reward of sorts for undergoing the infusion that
kept me locked to a chair for 4 hours as toxins raced through my veins. Once
home, I would simply cut the stem and place it in a cocktail glass with water.
It had become a regular thing for me to do these past three years and rarely
put any thought into it. Then last week:
I ended the clinical consultation with my Oncologist and headed directly
to the nearest floral arrangement for my prize. I picked the thickest pink bulb
and proceeded towards the elevator. Suddenly, I was filled with an immense "nurturing"
energy that overwhelmed me with the added thought that I needed one more rose.
I swear to you, I heard something in my head telling me "get one more
rose". My elevator had reached the main reception area and I continued
toward the exit. By this point I had my flower and really didn't want another
one, but the thought persisted. I proceeded to pay the parking valet when I saw
a nice floral bouquet next to the reception desk, so I grabbed another rose and
walked toward the waiting area. There, I saw a very thin young woman draped in
a hoodie with sweatpants that were barely hanging from her hips. She was framed
by a middle aged couple whom I assumed were her parents. We locked eyes
and she turned slightly into her hood.
"Give her the flower" echoed clearly in my head.
I respectfully asked the older couple if it would be OK to give her the
flower. They said yes, so I knelt and gently handed it over. I introduced
myself and told her that I was also battling cancer. Her face lit up amazingly.
She caressed the edges of those rose pedals delicately as if it was her first
flower. Perhaps it was, seemingly signifying the many floral events
that mark a young woman's life: Prom, First Dates, Weddings, Anniversaries, Valentine's Days...
I got in my car and drove off with tears in my eyes.
The rest of the day remained calm as I reflected on what had
transpired. Not analyzing its meaning nor its value. Neither asking if a God or
higher force was involved. But just realizing in the silence of the moment what
cancer, or any other catastrophic events, can teach us: The joy
in the unbearable lightness of being.
If you've kept up with my little blog you'll note that last week was a semi-dark time. Hearing the word "progression" come out of my Doctor's mouth was enough to give pause to any hope I had of recovery. Not a cure, I know that, but some added time of which I would benefit from some future medical development. Some unforeseen discovery that is just around the corner. But in that moment when looking at the scans, trying to disseminate the weird shapes from the normal shapes, the mind going numb, only hearing partial words like "larger", "denser", "not responsive"... it really brought me to my knees, spiritually.
Funny thing about darkness though. It never lasts.
I have another Oncologist from whom I rely to get second opinions from and she had a largely different assessment regarding my health. Without going into details: everything was rather stable and the original scan reports showed that my treatment was in fact working. The "larger-denser" mass continues to be radiation scarring which can often be mistaken as a tumor. This mis-diagnosis had happen to me back in Nov 2016 and is called Radiation Fibrosis. And the benefit in having a PET scan from which to compare these CT-scans gives us better information: to build a better picture of the situation.
Hello-Hello-Hello.
In the end, the metabolic activity actually dropped a few points since Oct 2018, there are NO new mets in the brain, and my overall outlook is stable, which is winning the fucking lotto for cancer patients. Add the proverbial icing on the cake: my latest blood biopsy resulted in being NED: No Evidence Detected,which is pretty much being kissed by God.
The little engine that could. The Tortoise. Civilization. All are great with Progress. Progress in achievement; progress in perseveration; progress in growth...
But progress in cancer sucks. Progression, that is.
My latest scans resulted in a less-than-favorable outcome as it showed that the old spot in my lung apparently progressed (grew). I say apparently because the technician's report also mentioned that it could be inflammation. The same exact results were reported in October 2018 (see blog Cancer Man IV) where that same spot was detected, albeit a little smaller. They believe that this spot is a tumor due to the apparent growth, or disease progression, yet it does not have the full-effect of metabolic activity a tumor would demonstrate, so inflammation should not be ruled out. Capiche?
It's all a clusterfuck really. I sat in that patient room in the belly of Cedars-Sinai for an hour seeing my Oncologist wrestle with the computers to pull up the correct images. The computer crashed twice, the final report for the brain MRI was not finalized, and my old files would not appear in the system. In the end, I wound up in a fog of confusion not knowing where my health situation was, plus a tweaked mental anguish upon realizing that I reached the peak of insanity.
It was bad. I kept thinking of my girls and how I would not see them grow. Feeling that I let my dreams die while giving life to those of others. Feeling a wasted life... In that hour I was coming to grip with the tragic brevity of life and how precious it is. A coming to Jesus moment.
Cutting through the confusion I set a mental plan of attack and figured out my next steps:
1-Fuck this Oncologist.
2-See Radiation Oncologist while at Cedars for his opinion on scan results.
3-Get Image disc of latest scans & reports.
4-Set appt with the Clinical Trial Oncologist. Give him latest scans.
5-Set appt with my #2 Oncologist for 2nd opinion.
6-Shot of whiskey and eat tacos. Fuck the diet.
All 6 steps completed. Next week I should be busy gathering much more information and evaluating my next course of treatment. There will be a lot to consume mentally, but I look forward in seeing things with a clearer head.
However, I've come to the point where I do realize where my priorities should be. And, if I do have a certain number-of-days left, then, they should be spent on the continued progress of my daughters' well-being & growth. On whatever endeavour I embark on, this should be of utmost importance. It is my creed, my sacrifice, and my duty. And this, of course, includes my own well-being. It's time for a change in my professional pace.
Jan 24, 2019. 10:45 am. In my Oncologist’s waiting room in Ceders Sinai waiting to see the results of my latest scans. My blood pressue was a little high, but totally understandable under the circumstances. Still, continuing to bite the bullet grinds a man’s spirit, but it can also steel him. My choice what I do with this ball of energy I am feeling now in my gut. Embrace the challenge and push through.
