Friday, September 5, 2014

It's been a while...

I haven't posted since 2012 and I've been thinking about posting for a long time. Not sure why, maybe I was just lazy..anyways I just finished an inspiring documentary called "Crazy Sexy Cancer" by Kris Carr. She also has a rare cancer called "epithelioid hemangioendothelioma"(and I thought mine was hard to read) with tumors in her liver and lungs. She not only tracks her own life but the life of 3 other cancer survivors. My friend Llana lent me this DVD 2 years ago but I finally watched it tonight..yea it takes me a while to get to stuff sometimes. This reminded me that I should post updates once in a while, especially if it could help a future cancer patient/survivor...and yea for those who have seen it "FUCK CANCER"!

First up, the Crizotinib \ Xalkori seems to be working or I hope it's working. We have no evidence other than how I am feeling, which is the important part right? I have a scan coming up (unless insurance fucking denies it again) within the month then I will know for sure. My doc gave me 3 months to live at the beginning of July mainly because the scans looked so bad, lots of tumors along my upper chest wall and that's all we can see since I only had a chest CT and not a full body. I was in severe pain (couldn't bend forward or twist my neck without extreme pain) and I partially blame Cigna for this since Connie and I were trying to get a long overdue full body PET/CT scan and the Crizotinib for months which they denied even tho I have had the PET/CT many times. Maybe I wouldn't of been in so much damn pain if I started the drug earlier and we had an earlier scan to show how bad it was getting. I was also recommended to get off the Pazopanib by this point since my docs said it's most likely not working anymore. These TKI or "nib" class drugs are typically tested for 6 months through clinical trials and they stop working after about a year for many patients. This is uncharted territory for medical science and earlier in the year my doc even told me "anything goes" at this point in my Pazopanib treatment. I was like "greeaaaaat"...At least he's honest with me.

When I arrived at UCLA in early July writhing in pain, my doc prescribed me some of the most powerful pain meds like Dilaudid (another opioid)  and Fentanyl patches (100mcg in strength). The patches aren't prescribed to anyone unless they have leveled up to the final opioid (yes I've tried just about all of em by this point). Not only that, it is 80-100x stronger than Morphine! Dat some powerful ass shit man. It's a patch that slowly released opioids into my system over the course of 72 hours but if I try to ingest it all at once it will just kill me (even extremely hot baths can kill me since they are heat activated). So I have read on the forums that I need to "respect the patch" now I takes baths in between patches. The patch and Dilaudid were working and I felt less pain but I was experiencing memory loss and I just didn't feel good at all. The 50mcg Fentanyl patch wasn't enough so I had to go up in dose from to 100mcg just so life was somewhat bearable. Connie organized visits by my friends including many Blizzard folk and my boss Chris. They can attest to how bad I looked and sounded. I didn't even remember some of the visits since I was so hopped up on drugs and I was literally dying on a rented hospital bed at home. There wasn't much the hospital could do for me even if I was admitted.

Here's where timing gods were really on my side. Around the time Connie ordered me a hospital bed and Kimba lent me her wheelchair I get an email from my HR manager Julie that using the powers of Activision Blizzard Benefits (ABLIFE) they were able to overturn my denial for the Crizotinib. I was excited to hear that since by that point I had nowhere to go and the doctors were about to give me full chemo just as a last ditch effort. So before the end of the week I get a call from CVS Caremark(CVS's specialty drug delivery service) saying they had my delivery ready for the 14k a month drug roughly 250 bucks a fucking pill, seriously...they also have to tell me the cost since it's delivered to my door. This is the drug that my Foundation One tumor testing (from March 2014) showed as a potential winner to hopefully stop or slow my tumors down (for those interested I needed an ALK inhibitor). Luckily they do next day delivery so I was like " fuck ya!". Anyways I started taking it right away and felt noticeably better within 3-4 days. On a side note, foundation one took care of the appeal cost and the 7k that Cigna didn't want to pay for was covered..yay.
Week by week I was feeling better and there was some side effects in the beginning (like vomiting from driving or eating) but those went away as soon as I was on a consistent regiment of Zolfran (a safe anti-nausea med) and fruits! It was also only the first week where I had noticeable side effects (I do see light trailing in the dark but that ain't so bad). No more white hair since that was a Pazopanib thing and all the other side effects are coming from my insane 100mcg Fentanyl patch. I am trying to taper back down to 50mcg since it is highly physically addictive and adds to my breathing problems which I already have issues with...yes.. I haz lungs filled with innumerable amount of tumors along with childhood asthma which has come back.

In early July when things started to get bad my wife Connie (Constance Griffith) took leave from her designer job at Carbine Studios to be my caretaker. Since my arms are still weak and its hard to pick up heavy stuff she basically takes care of most everything around the house (including some upgrades which she couldn't do while crunching and wanted to do for years). I love her now more than ever and she has fully taken responsibility for my health (I mean read the last 2 blog posts). She has been super awesome and my best supporter during these brushes with death, I know it takes a large toll on her and I wish that I was recovering faster so I can physically go back to work and help out more around the house.  My dad Del has also been pitching in along with Connie's brother Rob and my..mother Yoshiko. I still get tired easily and it's embarrassing sometimes since I am so used to being able to do everything alone. I really have to pace myself otherwise I can't catch my breath and start to hypo-ventilate. I have been feeling less physical pain week by week so we will see. On a final note, I have been more emotional now that ever in my life which is a bit weird for me being half Japanese and all (ex. crying while talking to people, thinking to myself or sobbing during dramatic movies? I never used to do that). Anyways I will update the blog again once I get another scan and/or a UCLA update. KKG out.
PS. Connie will definitely, give me shit, for my, bad grammar and usage of comma's :)

Saturday, July 12, 2014

UPDATE: Successful Resolution with Cigna

I am overjoyed to write that we finally received Kevin's crizotinib (brand name Xalkori) yesterday at no co-pay, fully covered. Cigna also covered 100% of the cost (no co-pay, no deductible) for an adjustable hospital bed, so Kevin can now sit and lie down much more comfortably.

We had been working with the Cigna representative for Activision Blizzard, and despite my anger at Cigna because of all the delays and denials of services (delays and denials that have materially affected his health and mental well-being), I am grateful for Julie's efforts on our behalf. Cigna will make an exception on some agreement with Activision Blizzard, she told me what it was but honestly I wasn't really hearing anything except "we are authorizing the medication" so I'm not sure what it was. I don't wish to sound ungrateful, but I only wish this had happened sooner, before his health was allowed to deteriorate to this point. Because we managed to get chest CTs instead of the PET scan that kept getting denied (the whole point was to differentiate between radiation fibrosis and actual met growth), we've dropped the PET scan as the mets in his lungs have advanced to the point where there's really no point in putting any further energy into trying to get a full scan.

We have an appeal in process to get his gene sequencing claim paid for. Foundation Medicine (the company that performed the gene-sequencing) is assisting us with the appeal for the $7200 bill. They said they'll help us up to three levels of appeals, so I guess we'll see.

Otherwise than that, my goal is to just keep Kevin in relative comfort, keep him moving so he can stay independent, and hope the crizotinib will help slow down the progress of the disease, wishlist hope is that we see stability, maybe even reversal. It's a lot to hope for, but I'm glad that I'm at least supported by my work, friends, and family so I can be at home with Kevin.

Monday, July 7, 2014

Our Troubles with Cigna Health Insurance

It's been a while since we posted. To be honest, during periods of low cancer activity we've been trying to focus on having "normal" lives. Hah. The cancer was relatively stable for about a year and things were calm enough so I could actually ship my game. It sounds selfish, but making WildStar was really important to me and I wanted to be there to see it out the door. It was a relief for a few golden months to be stressed over nothing more than making deadlines and dealing with annoying coworkers.

Then Kevin's health took a nosedive in 2013, and now we're in 2014 with brain mets, lung mets, sternum mets, and the sacrum met (which appears to be mostly inert from radiosurgery performed in 2013).

This post is so people can follow a timeline of our tussles with Cigna:

July 2012 - Surgery in Germany for laser resection of lung tumors, left lung
Nov 2012 - 2nd Surgery in Germany for laser resection of lung tumors, right lung
Cigna Response: Denied, based on policy with Kevin's employer that no surgeries allowed in foreign countries, unless emergency in nature

We chose not to appeal this, after all it was clearly laid out in the handbook, so we paid roughly $70k out of our own pockets. Amazing friends promptly set up a fundraiser and replenished our thoroughly depleted coffers.

May 2013 - Discovery of 5cm sacrum tumor, choking the spinal nerve causing pain and gradual loss of ability to walk/lower body functions
Cigna Response: Refused to approve SBRT (radiosurgery) to zap the tumor, conventional surgery was out since the tumor was actually growing in the bone tissue itself and would have required pelvic reconstruction surgery, lifelong pain, all without a possibility of "getting it all out". We said no thanks, explored radiosurgery instead. I should note they apparently wanted us to go through traditional chemo and therapy despite being told endlessly by our doctors that ASPS (Alveolar Soft Part Sarcoma) is resistant to both and can actually even be aggravated by these.

Kevin also starts pazopanib, a targeted therapy drug approved for sarcoma use, we see some shrinking as evidenced by increased mobility and lessened nerve pain...BUT THERE'S STILL A 5CM TUMOR SITTING IN HIS SPINE. HEY CIGNA, WE CAN HAZ SURGERY NAO???
Cigna Response: Continues to deny SBRT treatment

July 2013 - Kevin hospitalized when pain becomes absolutely unbearable, doctors at the hospital order SBRT on the tumor after reviewing his case
Cigna Response: Denies SBRT, denies the entirety of the hospital treatment claiming SBRT could have been done as an outpatient surgery (WHICH WE TRIED TO GET BUT THEY DENIED EARLIER) Gives us an 80k bill saying that we're not responsible for services performed that were not medically necessary (I guess being admitted into a hospital for torturous pain as a result of a spinal tumor that we can't operate on because insurance is being a bunch of dickheads translates into "not medically necessary")... though I guess since he was hospitalized the onus to pay was on UCLA. Either way, dicks.

Kevin responds well to radiosurgery on sacrum, we see significant shrinkage and Kevin is able to walk with only minor discomfort now. He is on a full regimen of systemic treatments with shitty side effects, but it looks like it's keeping his lung tumors at bay. Before I have to find a lawyer, health insurance through my work (Yay Carbine, go WildStar!) kicks in and Blue Cross covers ALL of the 80k hospital stay + radiosurgery bill. Carbine health insurance > Blizzard health insurance.

Six month period of deceptive stability continues until...

March 2014 - Kevin gets a brain MRI and it's discovered he has brain tumors now. WBRT is actually approved by insurance and he's treated with it for three weeks. Loses hair, extreme fatigue, generally feels like shit. Added a second systemic treatment at this point called Afinitor (everolimus) but Kevin is unable to tolerate it. It creates angry ulcers everywhere, on his back and in his mouth. Kevin cannot even swallow water without being in pain. He drops something like 20-30 pounds before we decide the side effects are just too toxic.

June 2014 - Since the pazopanib seems to be having limited efficacy, with new brain mets having appeared, we search for other treatments. On the advice of a parent who has been battling on behalf of her daughter, who was diagnosed at age 7? 9? with this terrible disease, we had Kevin's tumor gene-sequenced. I'm hazy when exactly we did this, probably back in March, I think? Based on the results, we are strongly recommended to pursue crizotinib (Xalkor) and cabozantinib (Cometriq). But guess what, since neither are FDA approved for use in Kevin's disease, which is a super rare cancer (accounts for .01% of all cancers diagnosed in the US, comes out to maybe 200 or less patients total), insurance denies us. We ask them to make an exception. We want another PET scan to assess how effective pazopanib has been throughout the body.
Cigna Response: Cigna denies our pre-cert authorization request for the PET scan and also the drugs. Says it's medically unnecessary. We try and figure out ways to schedule alternate scans, using MRI imaging, and the loops the doctor's office has to jump through to get a single fucking scan should qualify those nurses for the Olympics. To their credit, they stayed on top of it all, communicated frequently with us, and did everything in their power (including spending hours on the phone with insurance, and with the employee rep from Activision Blizzard).

Now we are squarely in the must seek clinical trials/experimental drugs since our insurance refuses to pay for anything, but his brain mets disqualify him from a lot of things. I will be honest. I don't know if crizotinib or cabozatinib is the answer. In fact, Cigna is correct in that there is no large body of evidence that supports the efficacy in these drugs for ASPS. That being said, there are less than two hundred fucking cases of ASPS diagnosed in a year, most of which are incorrectly diagnosed as something else. Show me the researcher that goes HOT DIGGITY DAMN I can't wait to do research that will apply to .01% of cancer patients! (actually there are some, including our oncologist, but you get what I mean). A rare disease, with very little research work done specifically targeting it, by its very nature is not going to have a ton of peer-reviewed literature published about it. If they had already established an effective treatment for ASPS, wouldn't that be called a cure? This cancer has no cure, we're trying to find one, but apparently unless we're willing to fork out 14.4K for a month's supply of drugs, we have to wait for either a clinical trial or the appeals process to work itself out.

Oh, did I also mention they denied the 8k bill for gene sequencing? It's an experimental/investigational procedure. Foundation One is helping me appeal that.

So right now I have an utter loathing of Cigna, the healthcare system, and the fact that even though it's this cancer that's killing him, and not the insurance company, so many things could have been done sooner, faster, and with less stress and agony on both our parts. I am willing to bet that palliative care measures that I'd like to get for Kevin (a wheelchair, a hospital bed, oxygen tank) will be another terrific fight. It shouldn't have to be like this. A stage four cancer patient should not have to fight health insurance every step of the way to get treatment that will improve his quality of life and extend his life expectancy.

Do me a favor. Share this story. One day, this could be your story.

Devil's Advocate Section

Things Cigna has covered:
-doctor's visits, all of them, and we see a lot of different doctors frequently. Last time I counted he has five doctors he checks in with regularly
-UCLA is one of the top healthcare institutions and it's within our network. I am grateful Cigna covers them
-Many of his scans, and he needs to get them ever 3-4 months (I have no idea why some are okay and some are not)
-most of Kevin's non-targeted therapy drugs like synthetic thyroid hormone (low thyroid levels due to crazy cancer drugs), though they did cover the approved pazopanib which is a pricey drug, all his painkillers (also expensive), and other stuff

I appreciate that Cigna has covered some of the costs of Kevin's healthcare. What I fault them for is not willing to cover things that could potentially extend his life, especially as the cancer began to advance. I feel like right now they are just waiting for him to DIE.