What's it take to get an MRI around here? October 26, 2014

Friends and Family,

 

Here's how a recent conversation went with my oncologist:

Me:   "My right elbow itches, and I get a twitch in my left eye when I eat squash."
Doc:  "Could be the cancer. We should get you an MRI."

Those weren't the exact words, but pretty close. I had some pain radiating down my right arm for two days, so I dutifully reported it, just like they drilled into us clinical study participants. 

I thought it might just be an irritated nerve, but when you're an oncologist everything looks like cancer. Since I have cancer in a couple of spots in my spine, he was worried it had spread to my neck. Regardless of whether I agree every time, it's good to know that he has my back.

This is when I got a lesson in the costs of running a clinical trial. Before he ordered the MRI he had to email the drug company to find out if it was something they would pay for, or whether it would my insurance would have the honor. Routine care goes under my insurance. Anything not routine, like my biopsy, EKG's, lab work, etc. gets paid for by the drug company. 

You thought I was going to San Diego all these trips for treatment? Nope. All I do for treatment is take a pill every day. The trips to San Diego are to get scanned, sampled, and studied.

Every CT, MRI, and trip to the infusion room for EKG's costs thousands. If you've ever been in a hospital you know that the bill is always, always, always higher than you think it could possibly be. 

Multiply these thousands by a couple of dozen or more events over the course of a year or two for the trial, and the math gets pretty staggering. Then multiply that by 440 participants. That's without even considering the cost of all the brains and research it takes to develop the drug. 

It all adds up to the reason why they charged $200 per pill for Tarceva, and why they'll probably charge something similar when AZD9291 grows up and gets a real name. 

I have often thought about the massive bill my insurance company is paying for my care. I have often felt guilty about these massive bills piling up over eight years, and I'm still running up the tab. I am one of the reasons, I thought, why your insurance premiums are so high. 

Am I worth spending that kind of other people's money - your money - to keep me alive? What is the value of a single human life, when the cost is so extraordinarily high? That has been a heavy weight to carry. Not enough to overcome my survival instincts, but all the same it has weighed on me.  

However. 

After eight years I've had time to think more about this. This is how it looks to me: 

The drug company spends a zillion to develop a drug. They pass this on to my insurance company, and make all their money back, plus another zillion for their trouble. 

They also sell it in other countries, sometimes for full price, but it's really based more on ability to pay. It can be sold for a fraction of the price, although they may wait until it has gone generic before they sell it at the discount rack price. 

Yes, your insurance dollars are paying not only for my care, but for the cost of developing the drugs that will be used around the world. You are also paying for future care, since the patent will run out in 20 years, and then they will be selling these pills for a few bucks. I'm OK with this system, because this country can afford it more than a lot of other places in the world. 

I don't know how you feel about it, but all this has eased my conscience immensely.

Back to my doctor and me. While I waited to hear back from him, I iced my neck and stayed away from the gym, so I wouldn't irritate it further. A day later he was still waiting to hear back from the drug company. I told him that the pain was gone, so he agreed to cancel the MRI request.

So what's the answer to the question, what's it take to get an MRI around here?" It's simple. If your baseline is cancer, anything more than a bad case of hiccups will get you another scan. But this time anyway, that won't be necessary. 

That's one less pain in the neck!

Love,

Dann

 

Partay!

You didn't REALLY think that Genevieve and I would go all the way to San Diego to start this new clinical trial without CELEBRATING, did you???

The night before I started the trial we went over to visit my buddy Craig and his wife Kim. I just learned that Craig is probably the FIRST PERSON IN THE COUNTRY to start on AZD9291. I think I was one of the very last before the trial closed. We are the bookends to what is turning out to be a terrific story!

Craig just learned that his cancer has shrunk so much on AZD9291 in just three months that his oncologist says that his tumors are barely visible! Now we have TWO reasons to celebrate, and TWO reasons for big heaping mounds of hope!

See Craig's latest at http://craigblower.wordpress.com/.

Smooth Sailing September 20, 2014

Friends and Family,

Yesterday was another day that could not have gone any better!

We met the Interventional Radiology (IR) doctor just before the procedure. I asked him if he knew why we're hoping he'll use the "little guy" tumor if possible. He told me it was probably in my chart. His "Fellow" (trainee doc), who had done his homework, was able to tell him that using the larger tumor would delay the start of my treatment by almost four weeks.

Next I told him that I was willing to tolerate a little more risk in going for the harder-to-get "little guy," in exchange for starting treatment sooner. He agreed to try. Again, it pays to be your own advocate!

I also handed this IR doctor a piece of paper and asked him to read it to while I was under sedation. Here is what I asked him to read:

"You're going to start shrinking all your tumors and the cancer in your bones right now, and you're not going to stop until it's all gone from every part of your body. Make it happen, Dann! Don't wait for medication to do it!

And so it is."

He gave a less than committed response, but his Fellow promised to make it happen. Better yet, after they left, Anthony, my nurse, told me that he would read it, because he understood what I was trying to do. He said he would try every possible approach to healing if he was in my shoes, because we just don't know what will or wont make a difference.

Anthony read it to me three different times during the procedure, more than I had asked for.

I'm not sure that Anthony has more than a vague idea how much this means to me, since I was too groggy to express myself, but he will. I will be sending him a thank-you letter today. Whether this hypnotic suggestion works or not, his caring left a big impact on me. It doesn't always take a tremendous effort to make a difference in people's lives. It just takes showing that you care.

I made it through the procedure without any complications, and the IR doc was able to use the smaller tumor. YESSSSSSS!!!!!!!! All systems go!

Tuesday we're off to Hawaii to think about sand and surf and the beauty of the world, and being T790 positive, and not all that much more.

We will find out if I get in the study in about two weeks, when we get the biopsy results. Until then, thank you for all your positive thoughts and prayers, and for visualizing T790.

What you do really does make a difference.

Love,

Dann

The Dream Team September 18, 2014

Friends and Family,

Genevieve and I flew down to San Diego this morning in advance of my lung biopsy, which will be tomorrow morning at 10:30. Due to time and distance they didn't schedule me for the usual pre-op consultation to explain what would happen.

First I should tell you that a year ago Genevieve and I planned a trip to Hawaii, which would have started today. I asked my new oncologist about delaying the start but still going, since there's nothing to do while we wait for the biopsy results. He didn't like the idea, since I wouldn't be close by if I get the green light. But what difference does that make? If I get in the study I could fly back from Hawaii just the same as I could fly back from Portland. So what would you do???"

We're going to Hawaii on Tuesday.

I called the oncology Nurse Coordinator to try to reach the doctor doing the biopsy, since I knew nothing about the procedure and I was losing sleep over it. I wanted to know how long before surgery should I stop aspirin, since it's a blood thinner. I also needed to know how long after the biopsy it was safe to fly, since I don't want a pressurized airplane to cause a collapsed lung. This is another reminder of how important it is to be your own advocate.

I was curious how they could do a "CT-assisted biopsy," since I've been in that CT tunnel at least 35 times now, and there's not enough room in there for me and the doctor both. We should have met long before this if we were going to be that intimate.

It turns out that they scan me, then insert a needle into my lung, usually through the chest but sometimes through the back. They then scan me again and see how close they are to the tumor. They go back and forth, scanning and adjusting, until they get their biopsy.

I'll be under conscious sedation and feeling no pain. The real danger here is that I'm told that you lose your inhibitions, but have no memory of it afterwards. The staff think this is sometimes hilarious. I'm just hoping that Genevieve isn't in the room, and that there are no hot nurses assisting. Genevieve thinks this comment is sexist, but hey, I'm a guy.

There are still two big forks in the road. The first is to see if I have the T790 mutation, which I will come back to.

The second is which tumor they biopsy, the big one or the little one. If it's the little one, no problem. If it's the big one, and I have T790, they will delay treatment for 24 days so that the tumor has time to "heal" for research purposes. Those will be nerve-racking days, since the cancer will be growing during that time.

If I have the T790 mutation, I'm in the study. If I don't, that's the end of it. I need to find a different treatment option.

This makes now a very good time to visualize:

<<<<<<<<<<<<<<<<<<<<<<<<< T790 >>>>>>>>>>>>>>>>>>>>>>>>>>>>

Speaking of visualizing T790, I have to tell you about our fantastic neighbors! Thursday night we got back from San Diego around midnight, tired and tense from all the treatment/no treatment stress. Friday morning when I went into the kitchen, I looked out the window and saw a giant sign that said, "DANN... T790.... Love Violet and Steve" in their windows!

After seeing that sign, I had tears streaming down my cheeks! With THAT kind of support, how can you NOT believe that everything is going to work out? You talk about team work? THAT is MY kind of team!

Such wonderful support has come from so many of you. It comes in your words, your emails, your blog comments, and your thoughts and prayers. It makes much more difference than you can imagine!

We all think we are so much more alone in this world than we really are. It's just that it usually takes a pretty big nudge for most of us to let each other know. There's much more "Team" around all of us than we know, until a great big opportunity pops up.

So do yourself and someone you love a favor. Create your own great big opportunity. Show them in some way that you love them, especially when they aren't expecting it. That's when it will hit home the most. You'll feel it too. I guarantee it.

That's what I call living the dream.

Love,

Dann

Getting Help Visualizing T790

We got back from San Diego about Midnight Thursday night. Friday morning I had breakfast and then looked out my kitchen window. This is what I saw!

Steve and Violet have these signs in their windows! It put a lump in my throat and tears in my eyes!

What amazing neighbors/friends to have!

Thank you, Violet and Steve! You're the best!

Course Correction September 4, 2014

Friends and Family,

Before Genevieve and I met with Dr. Cetnar today to get my CT scan results, I had the usual paperwork to fill out. The first question on the sheet is, “What are your concerns today?” I wrote, “Making sure that my excellent health continues.” I have felt so confident lately that it has gotten easier to fill in that blank with positive affirmations. Last month I wrote “World Peace,” since I had almost no concerns about my own health.

All that changed today. When a doctor’s opening line is, “I have good news and bad news,” you know what is coming next. In this case the good news is that there has been no increase in the number of little cancer mini-tumors throughout my lungs. The bad news is that a couple of the biggest ones have doubled in size.

If that was the end of the story it would be no biggie, since the biggest tumor is only 2 cm (3/4”), but what it means is that the cancer is learning to work around the Tarceva. It will only escalate from here.

So now we are left with a decision about what to do next. Here are the options Dr. Cetnar suggested:

1. Continue with the Tarceva, and use radiation when the little tumors get too big. This sounds like a crappy option to me, since I have hundreds of the little suckers, and I just can’t imagine that the radiology team can accurately zap a bunch of little spots and hit the targets.

2. Go through chemo again. He doesn’t like this idea, since chemo didn’t shrink the cancer at all last time around. However, it did stop the cancer from growing for some time. Not only that, but he was surprised to hear that my previous oncologist hadn’t used the same chemo cocktail that had been effective in shrinking the tumor that I had eight years ago. That gives hope that it might work again this time. The side effects aren’t fun, and the outcome statistics show a pretty short-term gain for most people, but it beats a poke in the eye with a sharp stick, at least by a little.

3. There is a clinical trial on a new treatment (AZD9291) that targets my cancer’s genetic mutation, but only if the cancer has further mutated in just the right way. My chances of having the right new cancer mutant are 60%. To add a little more challenge to this, there are only two places in the country that are running this clinical trial right now. The closest is at UC San Diego. He doesn’t know if they are accepting new patients.

4. I could start on afatinib, which is similar to Tarceva. About 11% of the people who switched when Tarceva stopped working had shrinkage of their cancer. However, what we didn’t find out is what percentage were able to stop their cancer from growing. It would be great to get rid of it, but I would be happy with a drug that stops it in its tracks for any length of time.

There are other options, all of which Dr. Cetnar thinks would be chasing rainbows.

The upside to all of this is that the growth has been so minor that we don’t have to race around in panic mode to come up with the next step. If the cancer was growing faster we would have to make a quick choice, maybe more out of desperation. Instead, we have time to evaluate the options.

This is a lot to absorb in the last three hours, but we worked out an initial plan. Dr. Cetnar and I will both call UCSD and see whether they are admitting new patients (since sometimes they listen more to the doctor, and sometimes they listen more to the patients advocating for themselves), and what it would take to get me in the trial. Meanwhile, I will also try to get a consult at MD Anderson in Houston, which Dr. Cetnar says is consistently rated one of the top two cancer centers in the country.

I am extremely fortunate in how this is turning out. I have a buddy in San Diego that has been on a remarkably parallel path to mine. He is close to my age, has the same type of non-smoker’s lung cancer, started Tarceva about the same time as me, had radiation to his hips at almost the same time as I did, and just started on this AZD9291 clinical trial two months ago. He is the one who told me about this trial. Long ago my oncologist met the AZD9291 pharmaceutical rep at a conference and asked to be part of the first wave of clinical trials, but he never heard back from the rep, so he didn’t know that clinical trials were actually underway. Hearing about it from Craig may end up saving my life, or at least extending it for a healthy interval.

All your positive energy and prayers are very much appreciated right now, and I do mean POSITIVE energy! Leave your pity behind! Bring on the cheerleaders!

Love,

Dann