Sunday 19th February 2017,
The Liz Army

A cranky primer on treatment for brain cancer, including a shoddy explanation of clinical trials

My at a few months old. My dad liked these slides.

“I want to be in a clinical trial,” said my dad who, less than two months earlier, elected to forego all treatment options and was enrolled in hospice.

A little over a month ago I blogged about my deadbeat dad who was diagnosed with a glioblastoma that was pushing over his brain’s midline. My siblings and I worked hard to convince my mom to allow him to move from San Diego to her home in Colorado to die under the care of hospice.

To any normal ex-wife this would have been a hard sell, but it was an especially strained request for my mom. After a 14-year marriage she filed for divorce from my father after various abuses, the final straw of which was him beating her half to death in front my older sister and brother. (I was 18 months old at the time and have no memory of this event.)

However, my mom was somehow OK with the idea of allowing a man she divorced 34 years ago to come die in her home. She was no longer afraid of him (not because he had brain cancer; she is a total badass). He had nowhere to go. He was falling a lot. His aphasia was making it hard for him to talk and read. She felt bad for him as a human being.

Skip ahead to today and he has been at her house for over 6 weeks on hospice. Hospice rocks, by the way. I could/should start a whole new blog about hospice but for now I will just leave it at “hospice rocks” and please trust that it is not an overstatement.

I don’t talk with my dad. Over a year ago I decided I would be perfectly fine if I never saw him again. My motivation for seeing him in the hospital in San Diego was out of intellectual curiosity and to help my siblings handle a healthcare situation in which I was uniquely qualified to handle. I feel a twinge of guilt that my reason to help was out of curiosity, but what can I say? The dude used to beat up my mom.

I call my mom twice a week to check in. I don’t want to talk to my dad, but I certainly ask a lot of questions about him.

How does he look? How are his language skills? Is he eating? Has he had any falls? Can he handle his activities of daily living? How is his memory? Is he being nice to you? Is he afraid? What other weird things are going on?

For any weird thing my mom brings up I explain why it is happening using some fancy neurological term that reassures my mom that his is all natural while making me feel distanced, clinical and intelligent.

I am sure my behavior and curiosity is not healthy, but I don’t know what else to say or do.

And all of that was fine until yesterday, when my mom said that my dad started asking his hospice nurse about clinical trials.

What the what?!

Rule 1: Hospice does not provide curative treatment

Hospice is amazing because they are there to provide care for you when you are nearing the end of life and you have officially opted out of treatment, perhaps because all treatment options had failed or you are really frail and you are like screw all that crazy brain surgery stuff.

Hospice is a benefit covered by Medicare; it’s “free,” as in, we all pay into this benefit throughout our lives so we can cash in on it when we need it. A misconception about hospice is that you have to go somewhere to get it, but that is not true. Hospice is more commonly a service that comes to you in your own home. If you have to go to a place that provides hospice you will have to pay for room and board, and that is not covered by Medicare.

The main requirement to receive hospice care is that you have officially declined further curative treatment.

When my dad said he’d like be on a clinical trial he was basically saying,

“Hey, remember when I made a very clear decision about my healthcare and refused to receive treatment and was cool and all with going on hospice so I could come live with my ex-wife? Yeah, I changed my mind.”

Rule 2: You don’t jump from no treatment to clinical trial

If you get diagnosed with cancer, you know this.

You get your diagnosis and opinion on your treatment decisions, you might get a second opinion or two, and then you start on your treatment plan. For someone with brain cancer your treatment plan might like this:

  • Have a resection (craniotomy) or a biopsy to discover your tumor type and then treat based off of that information
  • Depending on the grading of your tumor and its unique genetic markers you might have:
    • Radiation therapy for 6 weeks
    • Temodar chemotherapy for 6-12 months, in some cases, up to a few years
    • Targeted therapies such as Herceptin or Tarceval
  • If you do not respond well to the therapy, or your tumor begins growing again after a period of time after chemo, second-line drugs may be taken, such as Avastin or one of the drugs mentioned above if you haven’t already taken it. In recurrent glioblastoma you may also be authorized to use the Optune device (which is magical hat that sends electrical signals through your brain–description not approved by the makers of Optune).
  • In some cases you might have a second brain surgery to remove more tumor if it is possible without impeding your functioning and quality of life.

It is only after all of the above bulletpoints are exhausted (which may take months to a few years) do you start thinking about clinical trials.

Rule 3: A clinical trial does not a cure make

Rather than copy and paste a great explanation about clinical trials by my friends at the National Institute of Health (which you can read here), I will break it down in Liz-isms.

There are three phases of a clinical trial.

Phase 1 means you are a lab rat who is taking the drug to test toxicity levels, i.e., see how much of drug X a human being can take before they die or develop various side effects. People who participate in these trials are doing it for the good of mankind and all patients who might be diagnosed with the disease after them in the future. If you are participating in a Phase 1 trial, you are a martyr and I salute you for your sacrifice. And also, we should have a Memorial Day for people who participate in Phase 1 trials.

Phase II trials look at how well treatments work and further review the treatments for safety, i.e., the next step up from Phase I.

Phase III trials are further refined trials that work with larger groups of people and compare how new treatments might work compared with known treatments and/or placebos.

In the brain cancer world, since there are so little of us to work with, I’ve heard that we never get the placebo–we always get the drug when we enter a clinical trial. This can be cool, or not, depending on your goals when you are short on options.

Where was I?

After my mom told me that my dad was asking a hospice nurse about clinical trials I asked what the hospice nurse said.

The nurse asked, “Why do you want to be on a clinical trial?”

That made me laugh. Classic! What a great answer. What is the reason behind what you want?

Is it because he wants to extend his life? At what cost?

I explained to my mom all of the treatment steps my dad would need to go through before he would finally get to the process of being qualified for a clinical trial.

She said it sounded so complicated and she couldn’t remember all of that. She asked me to write it down.

I was like, What the hell? Write it all down? Who do you think I am, a person who just writes shit about brain cancer stuff?

And then I remembered that I am a person who writes shit about brain cancer stuff.

Enjoy… and to be continued.

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  • Christi

    Oooooh, Liz, I have so many thoughts (and a 2 year old next to me getting ready for nap)! So, I will squeeze in what I can.

    1) I love you. 2) what your “dad” is requesting is totally common and normal. He’s a selfish asshole, but he’s also experiencing what most people experience near the end. 3) that hospice nurse is AMAZING!! I would even go so far as to say that RULE 1, in any healthcare scenario, should be to define goals of care WITH the patient!!! That includes equipping the patient AND their support system with as much information, in laymans terms, as is necessary to help them make an educated decision that is best for them. It also means that you assess and address and and readers and readdress, even on hospice. Once on hospice, you are absolutely not “locked in.” Too many people lack the continuing education and support needed to feel confident that they have made the best choice in coming on hospice. They forget how awful “treatment,” clinical trials or otherwise would likely be for them. So, huge props to the RN for helping define goals of care and likely disease progression. Ugh, it just doesn’t happen enough. 4) you probably know all this, but I love my Liz discussions and can’t help but chime in!

  • Scott Holloway

    Two things-

    1- The world is better because you write shit about brain cancer stuff. You’ve helped a lot more people than you realize.

    2- It’s nice to know you got your badassery from your Mom.
    Best wishes for a great year ahead.

    Scott

  • Jenna Delk

    Hi Liz. First and foremost, Congrats on your health – what a blessing! Secondly, I want to thank you for taking the time to share your journey in such detail. Admittedly, I am a sales rep for an intra-operative chemo treatment for high grade gliomas, but as I was researching my accounts in the Northern CA area I somehow have come across your blog. I still and have always felt very passionate about the treatment option I represent and it’s necessity for such a nasty disease; however it is your words of feelings, timeline of care, and stories that has provided me with the bigger picture of the patient’s overall care and struggles. I have considered myself an advocate for providing treatment awareness, but you are a true advocate and it’s clear that you have made lemonade out of the lemons you were given.