Sunlight and Ducks Make Pretty Good Cures January 10, 2015

Friends and Family,

First, I want to share a memorable vacation with you. It was pure joy. Genevieve and I went to Palm Springs with her twin sister Charlotte and my best friend/brother-in-law, Lorin. With a refreshing lack of pre-planning, we spent a day in Joshua Tree National Park (extraordinary), hiked in the Whitewater Preserve (gorgeous), and Lorin and I took a guided tour of the 3,200 wind turbines in the area (fascinating). We also made a spontaneous trip to the Rose Bowl in Pasadena. We bought discounted tickets from scalpers at the gate. If I could beat cancer the way the Ducks demolished Florida State, I would never have to worry about cancer again in my life! I can’t ever remember having a vacation that was so much fun! Of course, I have an advantage in the fun department. I have laser focus on making the most of every moment. “Live like there’s no tomorrow” turns out to be a pretty good motto.

On to the real news. On Tuesday I had my latest CT scan, and the news is good. The cancer is stable.

So after all the enthusiasm for the vacation, why the lack of enthusiastic excess about stable cancer? Because after the last CT scan six weeks ago, when the cancer had shrunk 60-70%,

I was getting spoiled. I was hoping for a continuing trend that would lead to being cancer-free. I even dared, for the first time since I was re-diagnosed three and a half years ago, to dream that I was on the verge of becoming cancer-free. The bigger the dream, of course, the bigger the crash if it doesn’t come true. Still, I consider it a sign of growth that I would rather risk the dream than try to be numb and lose out on the joys of experiencing a full life.

There were a couple of asterisks that came with this “stable” report. The first is that there were more leopard spots (“sclerotic lesions”) on my hip bones. The radiologist again called it possible cancer growth, while my oncologist again said he thinks it means that the cancer is further dying off and leaving little pockets behind. “The best indicator is that you don’t have any pain in your hips.”

I don’t know what you think, but I’m going with Dr. Optimist. Also, I want to thank Tori Tomalia for reassuring me that she had the same experience, and that all went well.

Tori has an outstanding lung cancer blog, by the way. See http://lil-lytnin.blogspot.com/.

The second asterisk in this CT report is that, while overall my lungs are stable, one spot grew and another shrunk. (“Spot” sounds better than “tumor,” don’t you think?) My best guess is that the ADZ9291 is attacking the genetic mutation it was designed to attack, but since I have more than one mutation, it may not be impacting the other mutants.

I finally found out how AZD9291 works. The cancer disguises itself to hide from my immune system. It puts on a fake beard and sunglasses and tries to blend in with the crowd. AZD9291 unmasks the cancer, so the hero of this story, my immune system, can attack it. What I take from this is that, with cancer, just like with politics and relationships, sunlight is the best disinfectant.

Now that I know this, I’m asking for your help again. In the past I asked you to “think dried prunes” to shrink the tumors. I believe that is one of the things you have done that has kept me alive. This time I’m asking you to help with something that works like AZD9291:

Think of sunlight shining in on each of the little spots in my lungs, hips and spine, and let that sunshine fry each of the little critters.

If you have a photo image of sunlight doing this, I would love it if you shared it with me. I’ll post it on my blog, so that others can benefit as well.

I hope your year is starting out as good as mine.

Love,

Dann

Genevieve's Healing Art #7

Love takes many forms. One of the things that Genevieve has done to help me beat this cancer is to create a series of artwork, which I am including on my blog on an irregular basis.

Here is what she says about her art:

"My art is greatly impacted by the energy of healing it can impart to the viewer. I believe intention and symbology can awaken the “chirotic point,” a place where the optic nerve interfaces with the brain and the subtle properties of healing energy are perceived and received by each cell in the body."

................................

#7

"Thinking positive is a key to healing. Color holds the vibration .The  silver dots  hold the healing properties from the infinite. Each thought can be its own color palette of healing vibration. It will change cellular structure."

Never a Dull Moment December 3, 2014

Friends and Family,

Genevieve and I are back in San Diego again, for all of the pokes and prods, scans and samples that are part of this latest three-day trip. We were tense waiting to hear the results from my CT scan, which was completed yesterday. It's the first one since I started taking AZD9291. By noon today we were in full "scanxiety" mode, still waiting for results five hours after we got to the hospital. 

We also had a new concern. Over the past five days I have had pain in my lower back that was shooting down my right leg. I had the same pain in the same place exactly one year ago. It got bad enough that I was in a wheelchair on a few occasions (airports, OMSI with the grandkids, and other events that required a lot of standing) over the course of a few months. Dr. Patel made sure the scan covered that area so he could find out if the cancer spreading.

One of the staff decided that we shouldn't have to wait any longer, so in between EKG's she gave us the Cliff's Notes version of the reports. It was decidedly mixed. The report for my lungs showed some shrinkage, but the one for my hips indicated that there were a few new lesions. 

This wasn't what we were hoping to hear. What did it mean that it was growing in one place and shrinking in another? My mind was racing, thinking about getting my affairs in order, and treatment alternatives - all the familiar ruminations. Genevieve was true to her own way of coping under stress, as she withdrew into a blank stare.

We had seen Dr. Patel before my scan yesterday, so he planned to release the results today, but not to see us again. After the report we had just seen, that was not going to work. I pushed to have the doctor see us.  

I'm glad I did. When he popped in a couple hours later, he was all smiles. He pronounced the results a total success. 

He said that what appeared to be new cancer spots on my bones was actually the cancer dying in those places, which made them easier to see on the scan. His complete confidence and experience with similar results was enough to convince us!

He also elaborated on the lung scan. Many of the countless baby tumors had disappeared, and many of the others were smaller. The biggest one shrunk from 24mm down to 7mm. Overall, he said the cancer had reduced in my lungs by 60-70%. YEAHHHHHH!!!!!!!!!!!!!

I have a new favorite oxymoron now: "Massive Shrinkage!" 

Now, about the lower back problem. It is not cancer. He thinks it may be a slipped disc or similar, something that should be treatable with a cortisone injection or similar. He said an MRI should define it more clearly. That sounds much better than either cancer, or the "torn disc" that it was (mis?)diagnosed as last year. 

Let's see... Shrinking cancer and a back problem that may be easily treated? 

I love the holiday season. Today was a little bit Christmas and a lot of Thanksgiving. There is a lot to be grateful for.

Happy Holidays!

Love,

Dann

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/.