Loaded for Bear

Friends and Family,

Is it that time again already? Yesterday we met with my oncologist in San Diego for the clinical trial, and of course to get scan results. 

It has been 13 months since I started on AZD9291. What a terrific run it has been! There was “massive shrinkage” – of the cancer – in the first six weeks of treatment, and then no change ever since. So it wasn’t a surprise when we met with my oncologist yesterday, and he told us…

The cancer has not grown! Yahhhhhhhhhhhhhh!

After the first few months on this treatment, I started asking the question that everyone in this situation wants to know: What happens when this treatment stops working? Every time we’ve had this discussion, Dr. Patel has waived his hands, smiled, and said, “You don’t need to worry about that. There are LOTS of options that will be available when you need them!” 

That all sounds great, but I have been around this block too many times to bet my life on it. “Don’t worry, be happy” makes a great song, and it’s a great way to live your life, but it’s not the best way to approach treatment when your life is on the line. 

I was particularly motivated this time because I have been watching my friend Craig, who is in the same clinical trial as I am. His cancer began progressing many months ago, and he hasn’t been offered a good alternative to chemo up to this point. I know that when I have been in Craig’s shoes, meaning each time a treatment has stopped working, all my careful, methodical thinking goes out the window and I get desperate to grasp at whatever treatment is in front of me NOW. The closest comparison for those of you without cancer would be job hunting: Doesn’t every job look a lot better if you are already unemployed? 

So this time, I came in loaded for bear. MUCH more politely phrased than this, I told him that “it all depends” wasn’t a satisfactory answer. I told him that I KNOW we’re going to have to genetically test my cancer when that time comes to see what treatment might be best, but what does his decision tree look like?

He must have been expecting the conversation to take a turn in this direction, and he was happy to go down this path. He started out with those words of hope that are sooo encouraging these days: “If you asked me three weeks ago, I would have given you a different answer. There’s a new treatment that has just come out in clinical trial." That new treatment is a drug called EGF816.

Of course, I immediately started reading up about this third-generation targeted genetic treatment. It works well for EGFR mutations after T790M becomes resistant to treatment. So when AZD9291 stops working, the next generation is upon us!

Another option is to combine this third-generation drug with Tarceva, the first generation targeted treatment. You know how grandparents and grandchildren sometimes get along better than the sandwich generation does with either their parents or their children? Turns out it works that way for genetic mutations as well! This is exciting stuff!!!!!!!!

Dr. Patel backed me up a couple steps, though. He told me that the FIRST option isn’t to switch drugs, because when AZD9291 stops working so well, the cancer still progresses pretty slowly. The treatment of choice is likely going to be radiating a few spots in my lungs if they start showing a little growth. He called it “spot-welding,” which is pretty descriptive. So that is MORE good news: If/when my AZD9291 stops working so well, it will be slow and gradual. That buys MORE time for MORE options. I love it!

Another option will be to try immunotherapy – drugs that boost the immune system. At least one of them, Opdivo, is already on the market, and there are two others in clinical trial (Phase II/III). A good number of people who responded to AZD9291 and then went on Opdivo had fairly serious side effects, so we’ll have to weigh that option when the time comes.

Keep in mind that, up until a few years ago, no new treatment options had been discovered for five decades. Now, I have been on three new drugs that didn’t exist when I was first diagnosed nine years ago, and there are many more in development. This is all good news piled on top of good news as far as I am concerned. This is all great news, and it brings up something I’ve been happy to spread for a long time:

Now, where would you guess I found this sign of hope?

In my oncologist’s office, of course!

Love,

Dann

 

 

 

 

New CT Results, and Requesting a Little Hope

Friends and Family,

My latest CT scan results are in, and things remain spectacularly unchanged. Can you see my smile from there? :-) I feel increasing gratitude after every scan, because I can’t count on this lasting forever.

I know this because the New England Journal of Medicine just published the Phase I trial results for AZD9291 (http://www.nejm.org/doi/full/10.1056/NEJMoa1411817). The average time people stayed on the drug before their cancer started growing again was 9.6 months. If my results are average, I have a couple of months before things change. I don’t plan to be average. I’m treating the stats like you would a pole vaulting competition. Somebody has to set the record. 

Ever since I ran into a guy at the LUNGevity Hope Summit who had been on Tarceva for eight years (roughly seven years longer than average – and still going), it has raised my level of hope.

How much difference can hope make? How much difference can love and support make? This is where I’m asking for your help.

Two things. First, I’m asking if you will send me your images of hope. In my last blog entry (below) I posted a couple of images of "Hope" that I found in Washington DC. I’m hoping you will help me expand that list by emailing more images to me. It makes more difference than you can imagine. As proof, those images you sent to me of light zapping the cancer and healing light a few months ago kept me (and many others) flying for months!

Second, I’m inviting you to join me for the Lung Love Run/Walk on Saturday, June 20th. My very own team, “Live Lung and Prosper,” welcomes new members and/or donations at http://bit.ly/1Kj9tbk. If you join by this Friday, June 29th, they can still guarantee you a tee shirt. After that it’s a gamble. (Sorry, it’s the real estate agent in me. Gotta create a sense of urgency.)

OK, I held back the best part of my CT scan results. It showed that my Swiss cheese hip bones and spine are turning solid again. Was this improvement caused by the AZD9291? Was it caused by the bone strengthening (Zgeva) injections combined with calcium supplements? Was it the healing light sent by y’all???

Hoping everything is going well for you, too.

Love,

Dann

Footnote: If you don’t have my email address, go to the Contact tab at the top of the page and give me your email address. I’ll reply with mine.

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

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/.

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!