Decision Time for My Treatment

Friends and Family,

If you could get the same life-saving medication without being in a clinical trial, would you quit the trial? That’s what I have to decide.

Two weeks ago, I got some spectacular news. My clinical trial drug, got FDA approved! World, meet Tagrisso, The Drug Formerly Known as AZD9291. For me, getting this news felt like a holiday! Thousands of people will now live longer. I am awestruck! It’s a crapshoot whether I would still be alive today, almost fourteen months later, if I had not gotten into this clinical trial. That makes the lives of those thousands of people much more personal to me. Woohoo!

Now here’s the dilemma: The approval of this drug means I have options. Ashley, the AZD9291 Clinical Trial Coordinator, called me. Since I now have a choice and could get my medication in Portland, she asked me if I planned to remain in the clinical trial. I got the feeling she was expecting me to say, “nice knowing you,” and never look back. But the decision isn’t so easy.

There are good parts and not-so-good about remaining in this clinical trial. On the not-so-good side, there is the time and expense of flying 1,000 miles to San Diego every six weeks. It also means getting CT scans twice as often, which means twice as much radiation, which means increased risk of… getting other cancers! Two medical professionals I asked denied being experts in this area, but estimated that CT scans have 100 to 250 times as much radiation as an X-ray. I don’t even know how to fathom what this means about my risk of getting other cancers.

But there are good parts about remaining in the clinical trial. To begin with, I literally owe my life to this drug, and I believe that gathering more research data is important. Since there are only 411 people in the world who have been in the trial, that’s a small number for research purposes. The irony is hard to beat: By remaining in a study to increase the safety for the people that follow me, I increase my own risk of getting another cancer.

There is also the HOPE factor. People who start this drug need success stories. For example, I started on Tarceva shortly after it was approved. My oncologist told me the stats on how long the drug was usually effective, but he also pointed out that there were people that had been in the clinical trial for many years. That gave me more hope. I told myself that I could be “that guy” who stayed on the drug for years. Now, I could be “that guy” for others that follow me on Tagrisso. But only if I remain in the study.

The other reason to remain in the study is that UCSD has an amazing team of oncologists who specialize in lung cancer, and specifically Dr. Sandip Patel. While many oncologists treat lung cancer, the knowledge of other clinical trials and cutting edge treatments that you get from a specialty team is incredible. By remaining in the clinical trial, I remain in contact with Dr. Patel, who can guide me when I need a new treatment.

So, my friends, what would you do? Are there other factors I haven’t considered?

Love,

Dann

Profiles in Lung Cancer Day 29: Genevieve de Renne

"Never underestimate the power of love, and the power of your own thoughts."

Genevieve displaying a small sample of her healing art

Genevieve displaying a small sample of her healing art

In honor of Lung Cancer Awareness Month, a group of lung cancer bloggers have gotten together to show the many faces of lung cancer, one for each day of the month. Today we highlight a caregiver. In a completely scientific and unbiased selection process, I chose my wife Genevieve de Renne to interview.

Genevieve’s role as a caregiver have been broad-reaching. Her efforts have ranged from the completely practical, such as her pit bull diplomacy with my oncologist, to creating several series of artwork that rotate in our home which are designed to “give subtle healing messages.” She employs countless methods that are more esoteric in order to influence the healing process, but in the end, I translate all of them to mean that she is sending me her love.

Here is my interview with her:   

How long have you been a caregiver? “If you are just talking about being a lung cancer caregiver, it has been a little more than nine years since you were diagnosed the first time. If you define being a caregiver as being there for someone unconditionally, it started when I was a single mom, and then when I was a caregiver for my parents in their later years.”

What was it like in the beginning? “I was in an emotional haze. It’s gut-wrenching to see your loved one go through something like this, and to know that there’s nothing you can do. I had no control, and it was challenging for me. I wasn’t prepared for how quickly I could go to straight to fear.”

What do you wish you would have known at the beginning that you know now? “I wish I would have known that a diagnosis is not a prognosis. I would want to know that we make adjustments, and that life continues. It just takes a different course. I would want to know how important it is to stay in the present, and not let my fears take over.”

What has been the hardest part? “My fear of losing you. For example, if your cough doesn’t sound right, or it sounds like you are breathing harder. It brings up my fears of loss and abandonment. If you have old issues, cancer will bring them right back to the surface. I have to stop every time I have a negative thought, and consciously change it.”

What has been the most rewarding part? “Watching you grow into your gifts. Seeing you develop your interest in writing, and sharing it with others. Watching you let people see the light inside of you.”

What advice would you give to other caregivers? “First, you are a witness to the process... you can’t fix it for your loved one. We can only do what is within our control.

Next, be prepared to be really flexible. There is no clear path, so you have to make it up as you go along. You just have to have faith that the next section of road will appear when you need it.

Finally, remember that you are a part of this journey. Embrace the changes within yourself as you go through this. Emotional things are going to come up, and you need to be present every step of the way. You are becoming a stronger, better person because of what you are going through.”

What do you think would be the most surprising thing for survivors to know about what it’s like to be a caregiver? “Caregivers feel helpless many times. The journey is a physical one if you have cancer, and an emotional one if you are the caregiver.”

How has being a caregiver changed you? “Totally! I think being there unconditionally for somebody… not the Hallmark card version, but really knowing it in my bones, has been the most rewarding part. Knowing the deeper parts of loving somebody and being loved, and feeling that on a cellular level.”  

What is something that people wouldn’t know about you? “I think that, because I’m quiet, people don’t know how much inner strength I have. I rely heavily on my inner strengths, my resilience, my problem solving, my flexibility, and my creativity.”

What gives you hope? “Your passion for life! Also, that we just learned that there’s another treatment step that will soon be available for you. In the big picture, people are surviving longer, and speaking out more. I love that there are people who are passionate about research who are making a difference!”

What resources have been most useful in helping you through the challenges? “Having support people that consistently give me a bigger perspective. For me, that has been my twin sister, and a good friend.”

Last parting words? "Never underestimate the power of love, and the power of your own thoughts. You have to love every cell in your body and send them positive thoughts. This applies to caregivers as well as survivors."

Click here to see yesterday’s story about Dr. Alice Shaw, written by blogger Linnea Olson.

Click here to see tomorrow’s story about Jamie Schull, written by blogger Kim Wieneke.

For a link to every profile written in Lung Cancer Awareness Month, click here.

Profiles in Lung Cancer Day 18 - Gail Lemaire

Gail Lemaire: "I have 30% lung capacity and I'm still laughing my head off!"

In honor of Lung Cancer Awareness Month, a group of lung cancer bloggers have gotten together to show the many faces of lung cancer, one for each day of the month.

Today, meet Gail Lemaire, who has been beating lung cancer for 23 years. Now THAT brings hope to the rest of us!

Gail, what is your connection with lung cancer? “I am a survivor of lung cancer five separate times over the past 23 years. I have also had breast cancer twice, and thyroid cancer twice.” Gail is also an advocate for others with lung cancer.

Why do you think you’re still alive???!!! “First, I have the most unbelievable husband in the world. He is there for me every minute of every day. It seems doubtful that I could have made it through all of these difficult illnesses - cancer, surgery, treatments, and thousands of tests, etc., without his love and support. Next, I believe in the power of positive thinking. I want to LIVE my life, because I am the luckiest, most blessed, happiest, most contented woman you could ever meet! I’m thankful for every minute of every day that I’m alive. Also, God keeps me here for some purpose, and I’m still trying to figure out what that is. I hope I'm doing it. Of course, good treatment and good doctors are a very important part as well.”

Volunteer work? "I helped form a lung cancer support group at my hospital in 2010, which I still coordinate and co-lead.  I’m also an American Cancer Society Reach to Recovery (breast cancer one-to-one support) volunteer through my breast cancer doctor’s office. For the past 15 years, I have recorded a Sunday news radio broadcast for a Blind and Learning Disabled audience. Sadly, that agency has now closed. I also do other occasional activities, like volunteering at LUNGevity’s annual "Breathe Deep" fun Walk/Run."

Why all these different volunteer activities? “These Volunteer positions are the most rewarding work I could ever imagine.  Certainly, I feel better and get more out of working with other cancer survivors than any help or assistance that I could possibly provide to them.”

What does a typical day look like for you? “I am lucky enough to wake up each morning to my darling husband giving me a cup of coffee in bed!!!  I admit it, I'm spoiled!  I go to the hospital quite a bit for tests and treatments.  I meet up with other cancer survivors - and also do the "ladies who lunch" thing. I stay busy with my Bunko group , my book club,  my breakfast club, and my fine dining group. I also spend time with the LUNGevity group online, as well as a few others.  There are so many places online to share information about our health and wellness.” 

 What is something that people may not know about you? "I have 30% lung capacity and I’m still talking my head off!!!  I haven’t run any marathons, though. My husband and I are captive slaves to our 10lb. rescue/adopted dog, who has us perfectly trained to her liking."

What do you want people to know about lung cancer?   "If I tell someone I have Lung Cancer and they ask me "did you smoke or do you smoke?" it is very hurtful, and it infuriates me. It is an insult to imply if you were a smoker you brought on Lung Cancer yourself.” Also, in the immortal words of Sir Winston Churchill, "Never, never, never give up!"

What brings you hope?  "A doctor told me that we have learned more about Lung Cancer in the past 5 years than we have in the past 50 years.  That's hopeful!"

For yesterday’s profile of Kim Ringen, see http://lil-lytnin.blogspot.com/.

For tomorrow’s profile of Anne Gallagher, see http://aquariusvscancer.com/.

For a link to all of the November profiles, seehttp://lcsmchat.com/profiles-in-lung-cancer/.

AZD9291 Gets Approved!!!!!!!!!

I am absolutely thrilled to tell you that AZD9291 has been approved by FDA! This drug finally has a name, Tagrisso (osimertinib). The drug is approved for people who have the EGFR mutation, which also has the T790M mutation. The official FDA press release can be seen at http://1.usa.gov/1H0iCbY.

Since there were only 411 people in the world in the Phase II trial that I was in, I feel extremely fortunate to have already benefited from this drug for the past 13 months. I am also thrilled that my own success has added a small fraction to the research that has proved this drug to be so successful that it was approved in the near-record time of two and a half years!

Better yet, I am now excited about all of the people who will now be able to extend their lives, and their quality of life! Today feels like a holiday! 

To all of the researchers at Astra Zeneca, and all of the clinical research teams, including my own team at UCSD, I want to express my deepest gratitude for your extraordinary work. Because of you, I am still alive. Now, so many others will be able to say the same.    

Profiles in Lung Cancer Day 5: Lysa Buonanno

In honor of Lung Cancer Awareness Month, a group of lung cancer bloggers have gotten together to show you the many faces of lung cancer.

Today's lung cancer survivor and spectacular advocate is Lysa Buonnano, who impresses me more each time I talk with her!

Twitter handle: @thelysabee

Blog: https://lysabuonanno.wordpress.com/

How are you connected with lung cancer? “I was diagnosed with Stage IV lung cancer four years ago. I have been through chemo, radiation, four surgeries, and now targeted drug therapy (my miracle pills).

How do you spend your time? “I have done eight advocacy trips in the past four or five months, such as testifying on Capitol Hill to increase funding for cancer research, and doing other public speaking. I'm also a Lifeline mentor with Lungevity, and I'm a peer reviewer for the Department of Defense's Lung Cancer Research Project. I do something to support people that I know with lung cancer at least once a week, such as researching treatment options, and helping someone in my support group get insurance benefits for treatment. When I’m not doing advocacy, I spend a lot of time with my daughter and my family.”

How did you first get involved with advocacy? “I connected with my local chapter of the American Lung Association, and I have become their spokesperson for television and other media. That led to getting paired up with the national office of the American Lung Association. They fly me to D.C. a couple of times a year to meet with congress.

Why are you an advocate? “This is my way of giving back, and contributing to other people. I want to give other survivors hope that their life can still carry on.”

What does a typical day look like for you? “I get up and turn on my tablet to check emails, and then I do an internet search. I have Google Alert set up for key word searches: ‘Lung Cancer,’ ‘Medical Research,’ and ‘ROS1 (my genetic mutation).’ After that I try to have time for coffee on my patio. I enjoy looking at my waterfall.”

What gives you hope?  Research, and other survivors. To know ten-year survivors and to learn about all the new clinical trials makes me think I'm going to be around for a while!

What is something that people may not know about you? “I’m teaching myself to paint. I’m not great, but it’s therapeutic.”

“I made these for my kids. My daughter is a big Marilyn Monroe fan, and my son plays the guitar.”

“I made these for my kids. My daughter is a big Marilyn Monroe fan, and my son plays the guitar.”

Do you have a guiding mantra you live by? “Every day is a gift… even on my not so great days.”

What else do you want people to know? “Anybody with lungs can get lung cancer. It doesn’t discriminate.”

To see yesterday's profile, go to http://bit.ly/1PnCeYI.

To see tomorrow's profile, go to http://bit.ly/1Wx8sXo.

To see the profiles for the entire month, you will find a link at http://lcsmchat.com/profiles-in-lung-cancer/.

Profiles in Lung Cancer

November is Lung Cancer Awareness Month! Our group of lung cancer bloggers have gotten together to show you the many faces of lung cancer. Each day we will feature a different person on a different blog site. There are survivors, advocates, health care providers, and caregivers.

Tori Tomalia kicked off by profiling Melissa Crouse, a lung cancer patient and advocate. See the November 1st installation of our blog chain at http://bit.ly/1GWkIcB.

Today, Janet Freeman-Daily profiled Deana Hendrickson, former caregiver for her mother, and now long-time lung cancer advocate. Find out about Deana at http://bit.ly/1SkiGob.

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

 

 

 

 

Connect With Others Who Have Lung Cancer

Come to the LVNG With lung cancer event in San Diego this Saturday, October 24th from 9 AM to 3:15 PM. It’s a chance for you and your loved one to connect with other people living with lung cancer. This interactive community event will offer emotional connections, insights, and shared experiences from people living with lung cancer. On a more intimate level, smaller discussion groups will talk about the specific needs of both people living with cancer and loved ones. To register, visit www.lvng.org/events.

200,000 Reasons to Brag

Friends and Family,

Bragging is extremely uncomfortable for me, but I’m going to do it anyway. I have a purpose in mind. More on that in a minute.

Here’s my brag: When we moved my office to the top floor of our building almost five years ago, one of the guys started the Flight Club. It was a way to keep us motivated to walk up the seven flights of stairs to our office. He set up an Excel spread sheet that we could all access and use to track our steps. It kept a running count of the steps.

I’ve been climbing these stairs on average about twice a day. This week I just reached a personal landmark: I have now climbed more than 200,000 stairs. I reached this 200,000 step milestone despite having a second lung surgery, hernia surgery, radiation, chemo, back and hip pain that temporarily put me in a wheelchair, and month-long colds. I have also been working out at the gym 4-5 times a week during this entire time, because I believe that exercise is one of the reasons that I am still alive.

So here’s why I’m bragging: I want to motivate you. Whether you have cancer, other health problems, or even if you’re perfectly healthy, exercise matters. If I can do this when I am missing one lobe of my lungs, and have cancer in the rest of those lobes, maybe you can do some exercise for your health, too.

How many times have you heard on the news about research that shows that diet and exercise lead to better health?    

I’ve been in book stores and libraries, and I’ve done my own personal survey of how many cancer books are about diet, and how many are about exercise. Here is what I found:

  • There are approximately 1,562,435 books on diet and cancer.

  • There are approximately zero (0) books on exercise and cancer.

Okay, I didn’t count the books. And unlike my steps, the number may be a bit exaggerated. Still. The point is valid. Lots of cookbooks, no exercise books. I’m guessing it’s because people find it easier to change what they eat than it is to exercise. Why not do both?

I found this even looking around my own house. We have three cancer cookbooks, no cancer exercise books.

I’m not alone in my thinking. For years the American Cancer society has recommended exercise to help with the emotional and physical side effects of treatment. Now they are even beginning to see that it impacts treatment itself. Exercise impacts tumors. See this article on their website: http://bit.ly/1STmPDj.

I hope this blog entry has done the job. Are you feeling motivated yet?

Love,

Dann

 

Turtle Rescue, Meet Your Ambassadors, and More

Friends and Family,

What a week! First, there were turtle rescues.

No, not THAT kind. Rescue OF turtles, not BY Ninja Turtles. The second option would stretch believability even more than if I told you that I was still alive after nine years with lung cancer.

No, I'm talking about rescuing REAL turtles. That means we're back in Hawaii again, taking our usual morning beach walks. Only this walk was far from usual. First, we  came across this distressed-looking adult turtle, out of the water, baking in the sand.

While Genevieve called the Turtle Rescue hotline (yes, there is such a thing in Hawaii), I found a five gallon bucket and poured ocean water on the poor turtle.

Meanwhile, the Turtle Rescue man told Genevieve that finding this turtle on the beach either meant that it was in distress, or that it was taking a nap.

When I poured the bucket of water on the honu (Hawaiian for turtle), it immediately did a 180 degree spin in the sand and headed for the ocean at full speed.

So depending on your point of view, we either rescued this poor turtle, or made him grumpy by waking him up from a good nap.

Next, on the same walk, we come across a family with a young boy that has been stung by a Portuguese Man-of-War, which is a tiny blue bubble of a creature with a three-foot tale that feels like a bee sting on a string.

The boy had been touched on the leg, chest and arm, and welts were forming. Genevieve instructed us to get the white berries off the naupucka shrub that grows just about everywhere along the beach. We gathered berries, mom rubbed them in, and the boy immediately got some relief. Genevieve told them to go to the ER if symptoms worsened or he had difficulty breathing. The mom thanked us for the instant relief, and for saving the family a trip to the ER.

This stuff never happens, but this day EVERYTHING was happening. We were almost back to our beach house, when we saw a fisherman struggling to get his line out of the water. At first we thought he had a snag, but eventually we saw what he was reeling in: You guessed it. A turtle.

I offered to help. He reeled it in until I could grab the turtle and lift it by the shell. I held it while he ran back to get his pliers, and then pulled the hook out of the poor turtle's mouth. Once it was out, I let the turtle loose in the water, and he swam off at Olympic speed. He didn't even say thank you, probably because his mouth was too sore.

So I'm starting to think that this is why I'm still alive: To rescue turtles. But then Genevieve reminds me that we have been invited to be ambassadors.

Sounds impressive, doesn't it? Now you're wondering, "ambassador of what?"

I guess "Cancerland" would be the best answer. This is four-day speaker training program in Chicago, so that Genevieve and I can become more skilled at public speaking, and then speak at regional cancer-related events when the opportunity presents itself. Now THIS has our full attention. I can't think of anything more fulfilling than providing hope and inspiration for other people that are going through what we're going through.

Last, but number one on my mind for the past couple of weeks, I want to give you an update on my friend Craig Blower. Craig and I have been on parallel paths with Tarceva and then AZD9291 for the past almost three years, although Craig started AZD9291 a few months before me. He has had growth in his existing spots, and metastasis to some new ones. The treatment course is unclear at this time. He is asking for virtual hugs across the miles. If you are so inclined, visit https://craigblower.wordpress.com/ and say hello. It would mean a lot to him, and to me as well.

Love,

Dann

 

September Scare

Friends and Family,

It's that scary time of the year again. No, I don't mean it's time to go back to school. It's the scary anniversary time.

Nine years ago, close to this time of year, I went in for an X-ray of a sore back. The X-ray was photo-bombed by a tumor in my lungs, so I started chemo, and had the offending tumor and the lobe around it removed.

Five years ago, close to this time of year, we were happily enjoying almost five years of my being cancer-free, when a routine scan showed that the culprit had returned - in spades. The inside of my lungs looked like fireworks had gone off everywhere. There was too much to remove, but with multiple treatments, we kept it at bay, and even shrunk it.

Last year, at about this time of year, Tarceva stopped working, and the cancer started growing again. My own oncologist could see no good treatment options. I will say this: He should never play poker. It's a good thing I found the AZD9291 clinical trial without his help.

So, after getting bad news in three different years at the same time of year, Genevieve and I were having one of the worst cases of scanxiety we've had since almost the very beginning of this ride. Compounding the fears, results are now being published about how long AZD9291 typically works, and it's usually just about as long as I have now been on it.

Throwing me further off balance, my buddy Craig Blower https://craigblower.wordpress.com has had continued slow growth of his cancer while on the same drug as I am. I'm still on the edge of my seat waiting to find out how his last scans turned out. Meanwhile, Kim, a fellow Portland lung cancer blogger http://aquariusvscancer.com/author/kimmywink/ that I met at the HOPE Summit in May, is going through brain radiation. Compassion is not serving me well as I worry about these two, and my concern for them hits a little too close to the bone. 

Yes, we panicked a little. Rather, Genevieve panicked a little, while I was ping-ponging wildly between confidently believing that I'm going to be around until I'm 90, and worrying that I will be in hospice within a year. 

That makes the results from last week's scan all the sweeter. Yes, there has been no growth in the cancer! Now I'm SURE I'm going to live until I'm 90!

...at least until the next scan. 

So what have I learned from this? There are limits to what living in the present can do. Realistic fears are still going to creep in from time to time, and maybe that's not such a bad thing. Sharing our fears has brought Genevieve and me even closer, which helps me to not feel so alone dealing with this. Sharing with you helps in the same way. It also puts me in touch with my own humanity. All my hopes and fears bubble to the surface and remind me that I am alive, and how much I value this life that I have. 

I hope you are in touch with the treasures in your own life. Maybe you can pull it off without a heaping dose of fear.

That would be pretty great, wouldn't it?

Love,

Dann

Is Cancer Too Profitable to be Cured?

If you have been diagnosed with cancer for any length of time, then no doubt friends or family members have forwarded information to you about miracle cures from alternative sources that the medical community doesn't want us to know about. Inevitably, the information includes a statement that the cure has been kept from the public because "cancer is too profitable to ever be cured. This question was responded to on a public forum by Dr. Jack West, who is medical director of the thoracic (lung) oncology program at Swedish Cancer Institute in Seattle. Here is his response:

"As someone who cares for sick cancer patients every day and sometimes at night as well, a demanding job that takes a significant emotional toll, I'll start by saying that although I know you are only one of many people who is cynical enough to think along these lines, the question is callous and betrays ignorance.

First, cancer is not one disease but many. In fact, many cancers are cured, and we have made great advances over the past several years and decades.   I have many patients alive now who would have died had it not been for the efforts by my colleagues and myself.

Second, people who suggest that there is a cure for cancer available or readily attainable but not pursued because it's more profitable to continue the status quo have absolutely no concept how difficult an opponent cancer truly is. Cancer is cancer because it grows faster and better than the other tissues of the body, and its job is to mutate over time. That means that cancer cells throughout the body are not the same because they have different mutations, making some resistant to a treatment that is effective against many other cancer cells.  Even if a treatment is effective against 99% of cancer cells, the remaining 1% of cells that are resistant can not only survive but grow and divide and repopulate to create a newer, more and more resistant cancer. This is exactly what happens in many cancers, which can have dozens and dozens of different mutations in a single cell.

Third, I find it puzzling why people who suggest a vast conspiracy to avoid curing cancer ignore the unfathomable financial windfall for the company or institution that actually cures it. If you could cure previously incurable cancers, a company/doctors could charge an unprecedented amount for the treatment, even if they didn't need ongoing treatment. I assure you doctors would rather cure cancer than watch patients they care for decline and die despite their great efforts.

This prevalent theory that cancer may be too profitable to cure is perpetuated by ignorance, like climate change denial.  Unfortunately, there are always people who will abjectly refuse to recognize reality and continue to perpetuate ignorance.  I hope that after asking the question and getting a cogent answer that you aren't one of them."

You can see more from Dr. Jack West at one of my favorite websites, http://cancergrace.org/.

If Your Fate was in an Envelope, Would You Open It?

Friends and Family,

I had it right there in my hands. Should I open the CT scan report now to find out if the cancer has grown, or wait until tomorrow, when I see my oncologist in San Diego?

That’s what I was asking myself on Monday. I had my CT scan at OHSU (Portland) in the morning, and then came back in the afternoon to pick up the digital images (too big to email) along with the report from the radiologist. This is S.O.P., now that I am having my CT scans in Portland the day before we go to San Diego for the clinical trial.

What would you do, if you had your fate written down in an envelope? Would you open it? Burn it?

This wasn’t a question that would go away. Genevieve and I slept with the report five feet from our bed. We left for the airport at 3:30 in the morning, and the report was in my backpack, calling me. Flying down, I could hear a little voice from the overhead bin. “You don’t have to wait.”

I grabbed my backpack off the plane, and it was in my hands again. I didn’t let go until we rented a car and dropped it off at the hospital for my doctor, three hours before my appointment.

Then we waited.

Dog with Biscuit.jpg

I’m entering the time window when AZD9291 stops working for some people. This time window stays open roughly as long as Tarceva, but it varies a lot from person to person. For example, I met people at the HOPE Summit in DC this May that had been on Tarceva for seven years.

Since there is no clear treatment path after this, I don’t know what will happen if/when this stops working. The longer I stay on it, the more time we have to find the next miracle treatment.

At long-long last, we met with my oncologist. He told us the spectacular news we were waiting to hear. The cancer hasn’t changed a bit. We have six more sweet weeks of life to be grateful for!

OK, be honest. Up until now you’ve been thinking, “Dann, are you NUTS? Why didn’t you open the envelope?!!!” Although there may be a little (little?) madness, there’s some method in it. I’ve learned this lesson the hard way.

Nine years ago, when I was first diagnosed, I had chemo and surgery, and became cancer free. However, I was a lot more on edge about the whole death-around-the-next-corner thing than I am now. A year later, I got a call from my primary care doctor. He said my new CT scan had shown a “hyper-dense nodule,” and wanted me to come in for an ultrasound to confirm if it was cancer. Genevieve and I both went into shock. I can still remember where we sat when we discussed it, and feel the pit in my stomach. Fortunately, my appointment with my oncologist was only a few hours later. He told me that the report had been misread by my primary care doc (who has never butted in to my cancer treatment before or since). There was no cancer, and as it turned out, there wouldn’t be, for another four years.

THAT is why I don’t want to see the reports before I talk to my oncologist. A little bit of knowledge is a dangerous thing. Dr. Patel was complimenting me for my “will power” (won’t power?), but this was really about not setting myself up for unnecessary drama.

I have enough of that already, don’t you think?

Here’s hoping that all of your surprises are good ones.  

Love,

Dann