The lighter side of being (on Lorbrena)

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.

nuff said...