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....!!!!

Breaking Huevos - November 2016

There was a time I started to watch episodes of "Breaking Bad" to see how the main character was dealing with his own Cancer diagnosis (and not just the cooking part, although it did cross my mind). In one of the episodes, Walter White gets a PET scan and chats with the scan tech about how soon the results would be ready, but then notices the reflection of the scan tech's monitor a large blob on the screen. Thinking the tumor had grown, WW reacts by cooking a large amount of meth to compensate for what-he-thinks is the cancer spreading leading to his quick demise, but in the end results in something different. Keep this in mind as I outline November/Thanksgiving 2016.

After receiving the AVASTIN, the med my Oncologist suggested (the bleeding eyes one) I had a nasty migraine that lasted about 5 days. I had expected the typical 2-day chemo side effects but I had never had a migraine that left me bed ridden for a week. Plus I started coughing up blood again. The Oncologist ordered a CT of my brain & my lung that ultimately resulted in a negative result for the former; however for the lung:

Sencha

•Onc: "Alejandro, your chest scan shows progression of your tumor in your upper Left lobe. Are you having problems breathing?"
•Me: "No, just the bloody mucus & cough"
•Onc: "I'm going to refer you to a Pulmonary Specialist. We may need to place a stent in your lung to open up the airway"
•Me: "But I can breathe fine. How much has the tumor spread? Can it be surgically removed?"

•Onc: "Ahem... well, it's gone further into your upper lung and HMO won't approve any surgery for 4th Stage patients. Let me go ahead and order that referral".
•Me: "Ok... but are you sure the brain came back negative...  My head feels like it's in a blender. What can I take for the migraine?
•Onc: "Your brain scan came back normal. Just take more Tylenol."

Brain normal, THAT's an understatement...

By this point I was very frustrated with my medical team, especially my Oncologist, and proceeded to inquire about getting a 2nd opinion, but it would't be that easy since my medical insurance at the time was an HMO and I would need to get approvals beforehand. Especially if I wanted to see anyone outside of my network. City of Hope was charging about one thousand (out of pocket) for an initial consultation. There was another place in Torrance that was recommended, but it's in Torrance. In the end, though,  I stayed with the Big Casino after I scored a consultation with their Lung Cancer Clinical Research Director. And for the first time, after six months of my original diagnosis, I understood exactly what was going on within my body.

The Clinical Trail Onc proceeded to explain the type of cancer I have, how it spread, and followed up with showing me all the scans I've had and how things have improved/worsened. I got a better grasp at how this disease was affecting my body, but more importantly how it was not. It was fascinating to see how my hip bone was healing by creating new-bone around the tumor. Also, I was introduced back then to the Clinical Trails department and was offered a chance to be a part of a trail. One of my biggest regrets was not jumping at this opportunity then, especially after he talked more about the latest lung scan.

He concurred with the results that the tumor had spread into my lung and showed me on his screen a huge blob emanating from the center of my chest and spilling upwards into my upper long.

•Me: "Okay... what now?"
•Clinical Trail Doc: "I suggest that you follow up with your Oncologist's instructions and see the Pulmonary Spec. You should also have your biopsy tested for mutations as this will help identify the DNA make up of the tumor should you decided to get involved with trails."
•Me: Can I kiss you now?"

I left his office reassured that there was still hope in getting myself treated, though clinical trails are no easy road to success either. There is a lot that goes behind the scenes before a patient meets trail requirements, and then there are the unknown side effects and monitoring by the trail team during each phase.

But in the end none of this mattered...



My Oncologist did not follow through with the Clinical Trail Doc's recommendations and proceeded to stick to her plan of having the Pulmonary Specialist put the stent in my lung while she came up with a new Chemo protocol. I argued that I wanted to get my biopsy tested, but she conveniently brushed this away by saying that the HMO would not approve the cost.

So... for the third time in 2016 I was laying on the surgery slab at Ceders-Sinai, waiting to get this stent inserted in my lung to aide my "perceived" lack of breathing (even tho I did not have any breathing issues), and all due to the cancer tumor spreading.

And just like that episode of "Breaking Bad" I mentioned earlier, where it was discovered that Walter White's tumor did not in fact spread, but that the blob was actually radiation fibrosis (scarring from radiation treatment):

IT WAS NOT THE TUMOR IN MY LUNG THAT SPREAD BUT WAS  ACTUALLY RADIATION FIBROSIS.

In the end:
• I did not need the stent after all, there was no blockage in my lung.
• They did not see any evidence that the was a tumor alive, only radiation scarring.
• I was given a "lung-cleaning" for shits & giggles.
• And yes, the Tumor had not spread.

How the fuck did we go from That to This? Especially after three fucking doctors saw the same scan and came to the same conclusion?

Oh yeah...

Keep Calm and Chemo On - August/September/October 2016

Samuel Oschin Comprehensive Cancer Institute

The Big Casino

Getting Chemotherapy was not fun. The Oncologist never really explained what exactly it is, other than I needed to take a shit load of Folic Acid & B 12 shots before I would start. I always thought chemotherapy was a general pill, but it’s a combination of different meds that are fed via an IV. The combo depends on the type of cancer and in my case I needed about 5 bags of them that would take around 6 hours to administer per session, every three weeks. Add in some steroids, and you have a pretty potent cocktail that should help eradicate the cancerous cells. The issue is that it will also kill healthy cells, inducing a form of cell suicide by halting growth. Add in the side effects... Holy Fuck...
I would be knocked out for 2 days straight.



The Oncologist handed me this huge binder with information and then sent me on my merry way to do my own research. You can see more of it here:

https://www.cancer.gov/publications/patient-education/chemo-and-you

And at this point I still did not know the “full-protocol” of what my overall treatment would be, nor a schedule.  I felt like a Guinea Pig from the start, yet at the same time I needed to step up with blind faith, expecting that she knew what would be best for me. Besides, I was already under crap-load of other stress just trying to figure out how to get my personal situation under control in regards to financial matters, the house, mortgage, medical expenses, work, family, etc…

My whole life sped up to this point where making some serious critical decisions would not just affect me, but my young family. I also started to feel that any small action I would take would be directly affecting my family. It became hard for me to even buy a simple cup of coffee as I thought that extra dollar would go to feed my kid (“once I’m gone”), or buy her a warm coat (“once I’m gone”), or send her to college (“once I’m gone”).

A pattern of self deprecation started to develop. I felt that I was worth more dead than alive due to my Life Insurance Policy (which thank goodness I already had for a few years). And several times I wanted to just stop all treatments and dwindle away. Mentally drained, I just wanted to quit...

Cancer has that effect. It consumes your fucking spirit in ways I never thought it could. If afforded the luxury of sleep my dreams were peppered with images of me waiting at an airport, or on the tarmac… Sleep became non-existent at times and the burden on my mind/body weighed heavily as I continued pressing forward.

But then, there were some echoes of light:

October 14, 2016: Oncologist office discussing results of my 2^nd PET scan received the week prior.

Onc: “The PET scan shows the lung tumor has decreased in size. About 0.3 mm”
Me:  “Is that good?”
Onc: Well, after two months of Radiation Treatments & Chemo sessions it is a very small result, but a pattern we do want to see… However, your CEA tumor marker has not relatively changed. I'd like to see that lower.”
Me: “Yes, but a decrease in tumor size? I’ll fucking take that!”
Onc: “I’m going to add an additional medication called AVASTIN to your next Chemo session to shake things up. Perhaps we can get a stronger result but be warned, one side effect is subconjunctival hemorrhage.
Me: "uh, layman's terms?..."
Onc: "you may get bleeding eyes..."