Pill Popper

It's been 30 days since I started on the Xalkori treatment and I can't really tell if it's working. But really, the only way to know is to get CT & PET scans to determine if the cancer tumors have been affected in any way. However, the side effects are real and I have been feeling these in full force.

The worst was the itchiness and rash that blew up around my chest/back on day 12 of the treatment. The nurses at the Cancer Center said that this was normal as my body continued to adjust to the meds. But add in the fatigue, swollen ankles, muscle weakness and nausea and these side effects are compounded two-fold. Yep, the last month was a pain in the ass. 

Gives new meaning to "I wanna be a Flintstone"

Mentally I am drained too. Just living a life of popping pills to keep me alive is annoying, but I guess that's the main objective. To continue to live a life of a working family man with the regular ups-downs, commutes, and general bull shit.

I'm just tired. Really fuking tired. And I need a drink.

Btw, this is what $200 looks like:

or $12,000:

Yay Capitalism!

addendum....

Be Grateful for what you got.

Finding reason to it all

The mind fuck is real...

Getting a catastrophic disease is much more than the physical bodily reactions that come with the pain & discomfort. My mental stability seems like it's reaching a tipping point to where I just want to stop "fighting". And not that I am fighting anything major. I've seen many cancer patients at Ceders that look like they've been thru the grinder (and then some), yet I still am maintaining my cherubby look thanks to the steroids & anti-seizure meds. Still, I keep convincing myself that all of this suffering is actually due to a reason. That I am going-thru-this to evolve into a better person that will eventually help the world, or bring forth some sort of positive result thanks to the trails of pain I've been thru. But this all seems like bull-shit. 


As humans we tend to desire some sort of justification for what we go thru. Whether we deserve it, earn it, or simply say it's "God's-will", we tend to feel that there is some sort of energy that guides us into precarious situations that are meant to teach us something, and that's how I've been feeling these last 18 months. Especially the last three dealing with this brain tumor metastasis, brain radiation, and clinical trails... but now it looks like none of this even fucking mattered.

Back in October when it was discovered that the Opdivo was no longer working it was suggested by another Oncologist to get a new biopsy of my tumor to determine any new mutations. This would help determine how this cancer would be evolving, and hence discover what would be the best trail available. Well, the biopsy did not happen, so November-December-January was spent mostly treating the brain tumors, getting roid rage and being mind-full of suicidal thoughts (med side-effects)...

https://csn.cancer.org/node/308922

But last week, my trail Onc decided on having me take a new blood-test that was state-of-the-art to check for cancer mutations in my blood. Apparently, it has upwards of an 75% positive results in identifying the cancer and its current state.

https://newatlas.com/cancer-blood-test-dna-mutations/50936/

Well, I got those results yesterday and it was deemed that the cancer I have is a rare form of non-small cell LC (about 1% of lung cancer patients have it) called ROS-1, AND that there is already an FDA approved pill to treat it.

AN FDA APPROVED PILL TO TREAT IT...
Xalcori Pill


My Onc continued to state that this pill has about a 65-70% success rate in cancer remission for about 14 months, which means I may actually catch the last season of Game of Thrones, but Jesus I can't help but be irritated over this latest news.



Sure, leave it to me to be a curmudgeon and look a gift horse in the mouth, but why the fuck did I not get this cancer blood test done back in October? Having gone thru all of this bull shit, being rejected for the trails, getting on the steroids and putting my family thru all of the aggravation due to my mental/spiritual sanity? What was the REASON for all of this?

FUCKING SIGH...

Yes, I am comforted that I may not have to go thru any trails and put my body into any form of precarious situation. But one thing that was counting on was that insurance would have covered all expenses 100%. Now I have to see if this new pill is covered (or what my copay may be) since the cost could be within the thousands per month. Even Chemo/Immunotherapy sessions were up there, about 50K per month. Hey, in hindsight I've reached my goal of manifesting One Million dollars!!! Except they went up my arm.



Yes, yes, yes... better news all around. But the mind fuck is real...
So is this:

https://www.frontiersin.org/articles/10.3389/fonc.2017.00208/full

Bringing it home...

October 18, 2017:

Onc: "The latest PET scan shows that the tumor has returned to your upper left lung lobe, and it's also spread to one of your lymph nodes & sternum"
Me: "Fuck..."
Onc: "Unfortunately we'll now need to stop the Opdivo since it seems it is no longer effective in treating your condition"
Me: "What are my options now?" More Radiation? Back to regular Chemotherapy?"
Onc: "Well, we can't really go back to standard Chemo since you've been on Immunotherapy for the last nine months. And Radiation is only optional if you have major pain, and it wouldn't really make a difference... perhaps a clinical trail..."
Me: "Fuck..."

I left the Oncologist's office defeated. Here I was expecting better results after a good length of time on a med that seemed to be working. Now I was back to square one. I called Polly and wept. It was as if the whole battle I fought the last 14 months was worthless. The fatigue, the irritability, the side effects, everything that I had done to my body was worth nothing. I got myself into a semi-depression...

The next day I flew to Vegas for a scheduled company trip that I had not planned attending. But under the insistence of my wife I decided to go and cheer myself up by going on an all-night bender. And it worked, for a bit.

I returned home feeling in-limbo, but ultimately contacted the Clinical Trials department at Ceders, as well as City of Hope. Up until this point I had been depending on my Oncologist to determine the next steps, but now I was to take the bull by the horns and determine what is available to me for my current status.

And by the end of October I luckily was allocated a spot for an upcoming trail at Ceders. Good news I thought! Since I had been without any sort of meds for almost one month and was getting concerned that the tumor was continuing to spread. And then...

October 28, 2017. Out of the Frying pan and into the Fire:

I was visiting my parents in San Diego when I began to feel a strange sensation in my hands as if there was a loss-of-control, a weakness.  I shrugged it off thinking it was withdrawals after being one month off of Opdivo. Now, I had not revealed to my parents the latest results from the PET scan, nor did I say I was heading into clinical trails. Hell, I hadn't even mentioned that this was a malignant cancerous tumor all along. I thought by keeping them from the seriousness of my illness I was protecting them from any worries about my health. Then the Pandora's box exploded:

All of a sudden I felt the left side of my face go numb. "Holy Christ!" I thought. "I'm having a stroke"! I was quickly transported to the nearest ER, where I was given the standard stroke-test (pulling fingers, repeating words, checking vitals, etc). It was determined that I had not suffered a stroke but it would be necessary to get checked and ensure what was going on. With all the confusion, I broke down and finally confessed to my folks the sudden down-turn in my health. The results of the latest PET scan, the tumor spreading, the clinical trails...

October 28, 2017. Out of the Fire and into Brimstone:

Still in the ER, I received a CT scan of my Chest & MRI of my brain to determine what was the cause of the numbness felt earlier in the day. The results said it all: The tumor had spread into my brain, and was causing swelling in the areas where they were colonizing.

Me: "They...?"
ER Doc: "You have more than one tumor there..."
Me: "Fuck me..."

And so the journey into this madness not only continues but it's taking me deeper into the rabbit hole. The last two months have been by far the worst of this whole cancer experience after it was deemed I had 6 tumors of various sizes in my brain. This, unfortunately, made me ineligible for any clinical trails. Plus, I would need to get this tumor situation resolved before I would be considered a candidate again. So, Brain Radiation therapy for a week...

Add on top of that a steroid prescription to help reduce the brain swelling and you have a very moody and jittery Duke. Now, as we close 2017 I've still not heard of any certainly of my participation in any clinical trails yet. The PET scan I received a couple of weeks ago yielded better results in terms of the tumors being reduced, but it may take upwards of 4 months for these things to be completely healed. That would mean almost 6-7 months total without any form of medication since the Opdivo was stopped in October. Plus, being on this steroid has certainly changed my mood as well as my looks. I'm feeling pretty low at the moment, but in hindsight I guess many battles have their ups & downs.

In hindsight, 2017 offered me a look into what steel I'm made out of, especially during my low moments. I've faced my own mortality and have accepted it, albeit I still worry about my young family and their well-being should I pass sooner than expected. But realizing that HOPE & FAITH is all we can cling too is enough to get me up again and continue the good fight. That and good friends that have encouraged me along the way.

To them I say a heartfelt Thank you.

And too you, dear reader, I wish you a prosperous 2018.
The Big Casino

Immunotherapy: Miracle Drug? December 9th, 2016 - October 4th, 2017

During my last treatment of Chemotherapy I broke out in a rash due to one of the meds given. By this point it was my 6th session and things didn't seem as steady as expected for my Oncologist. So she decided to radically change my treatment protocol to a new wave of Cancer fighting meds just approved by the FDA.

You might of seen these commercials during day-time TV:

•Nivolumab (Opdivo)
•Keytruda
•Tencentriq

My Oncologist couldn't say much about them, but she directed me to investigate more about the meds online and determine which I would want to try.

Me: "Wait! Isn't it your responsibility to know all this info and tell me what is best"?
Onc: "Well, it just got approved, and I think it's best for you to determine what you would like to intake into your body".
Me: "So you have no idea of how this will affect me physiologically..."
Onc: "You can find that information online..."
Me: "and you're charging me?"

I opted for OPDIVO since their tagline is "A chance to live longer!", albeit when reading the fine print it states that it's 3 months more than those taking traditional Chemo. But hey, Game of Thrones would premiere soon and I figured three months is all I need.

The side-effects page is a lulu too:



Honestly though, this was the best decision I made. The treatment schedule would be every 2 weeks, plus it shortened the session from 6 hours to 1.5 hours. The cherry on top of it all is that the side effects were minimal, if non-existent. I was able to work the next day with not a lot of physical effect, tho a little fatigue would set in.

I kept monitoring my experience with Opdivo as 2017 rolled in as some of these treatment side effects compound over time.

January...

Onc: "Your CEA is getting lower"
Me: "And I have no pain. So far, so good..."

February,

Onc: "Your CEA continues to get lower"
Me: "I made it to 50! Happy Birthday to me!"

March,

Onc: "Your PET scan continues to show improvement in your lungs and hip"
Me: "Holy Crap, no major side effects in three months! I wonder if I can have some wine..."

April,

Onc: "Potential cure?"
Me: "Two Big Macs and supersize those fries..."

May,

Onc: "CEA is less than the minimal measured bracket"
Me: "VEGAS!!! Bartender, I'll have another Old Fashioned..."

June,

Onc: "Time for another PET scan"
Me: "How about a Brain scan?"
Onc: "No need if you don't have any side effects"
Me: "Shot of Jameson and a Zagorka (Bulgarian beer)...

July,

Me: "What's this pain in my hip...?



The July PET scan unfortunately showed that the tumor was starting to spread to the lower half side of my hip, which was causing the pain when I walked. Obviously some major bad news as here I thought I was getting in the clear with Opdivo. But you'll also notice the change in my behavior during the first 6 months of 2017, and needless to say I fucked myself up by not taking care of my food intake. Not that I was prohibited anything, but a measured approach towards food & alcohol intake was, and is, key to helping your body heal.


On the good side of the PET scan, my lungs were clear and it looked like the tumor was gone.

I consulted with the Clinical Trail Oncologist and he agreed with my regular Onc that I should continue with Opdivo treatments for now, but also get a few sessions of radiation on the hip to help with the pain. So in August, 2017 I began my second round at the Radiation dept at the Big Casino. 


August,

Onc: "CEA remains good"
Me: Why does CEA matter if it is good, yet the tumor spread"
Onc: "..."

September,

Onc: "CEA remains stable"
Me: "Stable?"

October,

Onc: "Hmm, CEA has gone up tho not that much. Also, your liver enzymes are reading higher than normal. I'll need to schedule another PET scan"
Me: "Okay..."

And then, on October 18, 2017:

It’s a great big, beautiful, wonderful, incredible, super-spectacular day.And your heart is humming with good times coming and you got that happy feeling things are going your way.All the bells are ringing and a little bird’s singing while he sits on your windowsill.Singing yessiree, I can surely see, it will plainly be, most definitely.A super-spectacular day!

UNTIL....!!!!