Sunday, January 30, 2011

Wanna meet my next surgeon?

Here's a great video with Dr. Yu talking about vaccine trials:

Thursday, January 27, 2011

Lets Get 'Er Done!

In spite of my typical inability to plan ahead, I've finally got...well...a plan! I will be heading down to Cedars-Sinai in Los Angeles on February 7th with (at least) one of my sisters. On the 8th I'll have a meeting with Dr. Yu to discuss my treatment, and then on the 9th I'll have the craniotomy to remove the tumor. Once I recover enough, I'll head back up to SF to recuperate with (at least) one of my sisters. Meanwhile, assuming the tumor is large enough, it will be mashed around with some of my dendritic cells to create a vaccine which I will get poked with about 3-4 weeks after. How's THAT for a plan!

As for the rest of my stressful time, let's just say that in spite of the brilliant and logical arguments presented by me and my sisters, Kaiser held their ground as expected. That said, I've managed to work around them and all is well and good in coverage-land.

While I was struggling through the decision making process, I did contact Livestrong, the organization for which Huck Cancer was (and is) raising money. They were incredibly empathetic and extremely helpful! So with that, I hereby announce a different "recurrence". If the tumors are going to repeat themselves, then so is the battle to fight them!

I give you: Huck Cancer II - Yes, We Still Give A Huck !!!

Spread the word, share the hate. And please donate.

Monday, January 24, 2011

I finally understand...

...why some people enjoy watching soap operas. It's a way to let your thoughts drift away from the craziness in your own life into the fantasy mayhem exposed in every episode. Add humor to the mix, and it just might absorb every free minute that "someone" has available. It also might explain why "someone" hasn't been keeping the blog as current as people might like. Just remember, "These are the Tates, and these are the Campbells, and this is...."

Thursday, January 20, 2011

Scrambled brain, scrambled days

Sorry for the delay in updating y'all. The last few days have been a whirlwind, and I'm not even sure where to start. From the clinical trial side of things, I have now finally spoken with Dr. Parsa at UCSF, and for his oncophage trial it sounds like I have a >50% chance of having enough tumor to produce vaccine. Yes, almost a coin flip. He also mentioned that if I were to go on the Toca-511 trial, I would likely eliminate any chances I might have in the future for a vaccine trial. This was the last nail in the Tocagen coffin. I am planning on speaking with Dr. Liau from UCLA tomorrow to find out a little bit more about their two vaccine trials, and soon after that I hope to make a decision. After all of this, I think I am still leaning towards the Cedars-Sinai trial, assuming that it does seem as effective as the UCLA trial. I'm likely not willing to take the "coin-flip" risk with the UCSF trial.

The rest of my time has primarily been spent trying to figure out how to pay for the trial. My "insurance" company, Kaiser Permanente, will not pay for the out-of-network surgery required by all of these trials. They would be happy to allow me into the trial if they could perform the surgery themselves. However, none of the trials can allow that due to FDA regulation. So here I sit in the middle of what clearly seems to me to be a financial clampdown of Kaiser. I submitted an appeal to their denial, and my appeal was...well...denied. I was offered, however, a personal 10 minute response to the deny-ers, live and in person. Today.

Now, according to them, I was denied coverage of this trial because "referral to the clinical trials [I] have requested is not medically indicated at this time because they lack efficacy in peer reviewed literature." And furthermore, "[My] treating neuro-oncologist...has offered to [me] treatment with a clinical trial with Tocagen or treatment with avastin/CCNU, which [I] have declined."

So, in 10 minutes I need to prove that (a) the trials I'm considering have strong evidence of efficacy (including peer reviewed literature), (b) the trials that are acceptable to Kaiser show far less efficacy than the vaccine trials, but require little financial contribution by Kaiser, thus indicating that their decisions are financial, not medical, and (c) the main thing that Kaiser is denying, the surgery required by the clinical trial, is, in and of itself, the most medically indicated treatment I could have given my current condition. Yes, that's a lot. My first step? Send out an e-mail to my family that says, "I need help!" Immediately they kicked into high gear, finding me several great peer reviewed articles and other information. I also touched base with the "Sue"-club, two friends who have a lot of experience dealing with Kaiser and with funding for clinical trials. And then I started to write. I wrote as much as I could for the rest of the day and into the evening. When I couldn't take anymore, I headed out for dinner.

On my way home I started to get pings from several different directions. The "Sue"-club and some people in the "Dorland hospital" have contact with several medical advocates, and those advocates laid out a concept for how to speak the truth to the deny-ers. Unfortunately, what I had already written would need to be completely reworked. I was overly exhausted and mentally spent. I decided I'd have to try to get that work done in the morning, mere hours before I needed to appear before the deny-ers.

This morning I woke up, turned on my computer, and saw that my (Google) document had been completely modified! Admittedly, my initial reaction was panic. My sister completely changed my document and didn't make a copy! And then I started to read. She had somehow reconfigured this document into the exact style described by the advocates. It literally brought tears to my eyes to see how wonderfully written and clearly stated it had become. It was as if I went to bed, and a bunch of elves came out and did all of my work for me. I presented this newly minted argument to the deny-ers as written, and even delivered it along with peer reviewed papers and a copy of the California law requiring insurance companies to cover clinical trial costs. While I'm still hesitant to think that they will reverse their decision, as a team, we could not have covered it any better. I will know within the next week.

So my thanks go out to the "Sue"-club, my freighbor, and of course my fabulous family. Both of my sisters deserve tremendous praise for the document I used to fight the good fight. As I said to a friend of mine who commented on their brilliance, merge a lawyer with an experienced Drama/English Literature professor and that's what you get...and I couldn't have asked for anything more.

Saturday, January 15, 2011

Quick update

I've heard from Dr. Yu at Cedars-Sinai, and it sounds like I'd fit in well with his vaccine clinical trial. I'm still waiting to hear from UCLA about their clinical trials, but the more I investigate and think about it, the more I'm starting to lean towards C-S. Even though I paid lots of money for the UCLA "2nd opinion", while C-S did it for free....

Next step, talk it over with my Kaiser neurooncologist Monday and hopefully nail down the final decision.

Wednesday, January 12, 2011

Hurry up...and wait

Over the past week, most of my time has been spent trying in so many ways to figure out what my final treatment plan will be. And I am a TERRIBLE planner. I've been gathering opinions from my oncologists and surgeons at Kaiser, UCSF, Cedars-Sinai, and now, hopefully UCLA. With each conversation I do feel like I'm one step closer to where I want to be, but I'm hoping that where I want to be isn't trying to slip away.

Here's the general layout of how things have gone. The initial discussions with my neurooncologist at Kaiser revolved around the remaining standard treatment, which would involve either surgery or radiosurgery, followed with Avastin and some other form of chemo. However, he did offer a 2nd opinion from the UCSF group to see if there are any interesting clinical trials that might serve a better purpose. One trial he suggested was called Toca-511, named after the company Tocagen. This trial is a Phase I trial with very little evidence in humans, but animal testing has shown marked improvements. The other trial that is buzzing in every glioblastomite's ear is the vaccine trial that UCSF is currently running. This trial requires a certain size tumor that is resectable so that enough vaccine can be developed from the extracted cells.

After manually carrying my medical records and images to UCSF, I was presented in front of the Tumor Board. From there I learned that (a) I would be a good candidate for the Tocagen trial, and (b) my tumor is likely too SMALL for the UCSF vaccine trial. I hate it when size really matters. It was also mentioned that the vaccine trial requires surgery at the trial site, and that in the past it has been difficult to get Kaiser to support any trials that require surgery. This was the beginning of what might by the largest concern overall. The most important opinion that I got, however, was that likely I should hold things like Avastin in my back pocket for times when I'll really need it, and instead should take advantage of clinical trials that show promise.

After that meeting, I began to research clinical trials further, and found another vaccine trial at UCLA and Cedars-Sinai. Their methods require resection of a much smaller tumor, giving me a stronger possibility of qualifying. I sent all of my medical records to those two teams along with a box of Poco Dulce chocolate (good idea Rat!)

In the meantime I had another meeting with Dr. Aghi at UCSF to talk about the Tocagen trial. He was very convincing about the possible efficacy of that trial, even though it's just started with very few results. In particular, he removed most of the major concerns regarding whether this trial will eliminate qualification for other trials in the future if needed. However, it sounded like this trial will essentially only attack the tumor that is currently active, whereas a vaccine trial can potentially attack all remaining cancer cells. One thing that was clear, UCLA was a partner on the Tocagen trial AND had a very interesting vaccine trial. I really need to talk to them to examine my best treatment options.

So where are we now? Well, UCLA has received all of my records and presented them in front of their Tumor Board. And? Drumroll please? They are mailing me the report to be received by the end of the week. Er?!? This is not the resolution I was hoping for. I did ask them directly if, while I wait for the mailman to show up, they could tell me if I might qualify for the vaccine trial. Still waiting for a reply on that one. Meanwhile, I'm hoping that should I get accepted to that trial, I will get the support I need from Kaiser, or this could be a pricey battle I'll be fighting down the line.

Friday, January 7, 2011

Drainage does it again

You gotta love having artists as friends!

As the world turns....

The last few days have been spent trying to figure out what the best option for treatment might be. Most of it was spent on the internet, and I can't imagine how people managed to care for themselves before it existed! Sorry, I refuse to embarrass Gore by misquoting him, when in fact *I* invented the internet. Or at least - I work for the company that helped invent it....

But I digress. Today I had an appointment at UCSF talking with one of the fantastic oncologists there, Dr. Clarke. I was ably assisted by Gabrielle, a ridiculously amazing and caring "survivor" who has dedicated a lot of her time to battling brain cancer. Together we whittled down the options to a plan that seems to make sense - until you throw in my insurer. Kaiser. Up until now I have actually been very fond of them, and stuck with them even though I had an opportunity to change health plans at work. I'm really hoping not to regret that decision, but so far I've heard far too many comments on how the best clinical trials I can find, those with the most likely chance of long term survival, will likely not be supported by Kaiser. I am certainly not going to let that stop my choices, and we will see if they would really be so cold. I'm hoping they won't.

In terms of my list of choices, I am mostly looking at several trials involving vaccines created from the tumor itself. One trial is at UCSF, and two are down in Los Angeles (AE, I might be visiting you after all!) There is another Phase 1 trial involving retroviruses, paid for by the drug company supplying them (so Kaiser wouldn't deny that one). Unfortunately, since it is Phase 1, there isn't much evidence that it will work, and not enough evidence that it won't cause problems. I'll be talking with the head of that clinic at UCSF on Monday and maybe that information will persuade me one way or the other.

I really appreciate the kind words passed my way by everyone out there. It means a lot!

Thursday, January 6, 2011


While I'd much rather be writing all of you to tell you something wonderful like "I won the lottery!" or "I was appointed Chocolate Czar!", unfortunately as many of you know, that's not the case. I had my usual MRI on Monday, and through a phone appointment on Tuesday found out that the stupid tumor is growing again. I haven't actually seen the MRI yet, but supposedly it's in the range of 1-2 cm. It grew fast. The past few days have been spent examining the possible treatments, and tomorrow morning I have an appointment with UCSF to see if I fit into any clinical trials that look interesting. Otherwise, it's going to be some kind of surgery (either normal or radiation), then treatment with Avastin and some kind of chemo (not Temodar). Did it come back because I stopped the Temodar? My oncologist didn't think so - it wouldn't have come back so quickly. The director of the support group said, "Don't even think about it. It doesn't really matter anyway."

What effect this will have on my lifestyle depends on what treatment I end up going through, but what affect it has is very clear....