NCI Features the ROS1ders on its CCG Blog

Today the National Cancer Institute published this blog about the ROS1ders on the Center for Cancer Genomics “Insights and Innovations” blog.  The Global ROS1 Initiative is underway!  I’m glad I was able to help share our story.

ROS1+ Cancer Patients Partner to Increase Research

May 23, 2017, by Janet Freeman-Daily, MS, Eng

In May 2015, I met four friends in a bar near Washington, D.C., to talk about not dying of cancer.

This conversation planted a seed that has grown into The Global ROS1 Initiative, a patient-researcher partnership that is redefining research into ROS1-positive (ROS1+) cancer. The Initiative includes a group of over 150 patients in 19 countries; two patient-focused foundations, Bonnie J. Addario Lung Cancer Foundation (ALCF) and Addario Lung Cancer Medical Institute (ALCMI); academic cancer researchers; and industry. The Initiative includes more than twice the number of patients enrolled in any ROS1 clinical trial thus far.

How did this happen? Let’s return to the bar. Read More …

Your Life, Your Choices — A Conversation


If you live in the South Puget Sound area of Washington State, and are interested in starting a conversation with family members about what’s important to you when you think about the end of life (which comes to all of us, though we know not when), please join us on Sunday, October 9, 2016, at Calvary Lutheran Church in Federal Way, Washington, at 2 PM for a free two-hour workshop.  Ann Hagensen, RN, FABC, (Virginia Mason Medical Center) will be presenting materials based in part on The Conversation Project. She will be joined by Karen Freeman Worstell (transformational grief coach and founder of NarrowBridge Solutions), Pastor Lori Cornell (of Calvary Lutheran Church), and myself.

This is a topic of vital interest to me, and not just because I have metastatic cancer.  I have extensive experience exercising durable power of attorney and navigating communications between family members over estate and end-of-life choices. I know friends who had serious accidents or died unexpectedly without having these conversations with their loved ones, and as a result their family members were completely unprepared for the decisions they faced. Because this is so important to me, I serve as an advocate on regional and statewide initiatives to identify and honor patient goals of care and end-of-life wishes.

I hope you’ll join us!

Building cognitive skills after chemobrain

Earlier this month the MIT News published an article titled, “The rise and fall of cognitive skills.”  It discussed research that found different types of thinking skills peak at different times in life.  I particularly like this part:

… crystallized intelligence — the accumulation of facts and knowledge … showed a later peak, in the late 60s or early 70s.

People who participated in this online study demonstrated their ability to build their vocabulary continued to increase into their 60s and 70s, which indicates their ability to accumulate facts and knowledge also continued to increase.  This is awesome!   As a person in my 50s with cognitive impairments from cancer treatment, I’m reassured to know that at least some parts of my brain may continue to improve.  Woohoo!

Now if I can just remember what I learn …



Death and the Cost of Immortality

Western culture is obsessed with avoiding death. For many, it is a terrifying concept.

Yet death is a natural part of the cycle of life throughout the universe. When plants, animals, mountains, planets, solar systems, and galaxies die, their components are released and transition to become essential components of other lives. If stars had not completed their cycle and died violent deaths, the elements necessary for life elsewhere would not have been created.

Some today seek immortality through plastic surgery, elixirs, and cloning. Others imagine a future with cryogenic preservation, or uploads to new organic or inorganic bodies. All of these options consume significant resources. In most cases, the technology is (or would be) affordable only by the upper levels of society.

Speaking as one who is consuming more than my fair share of resources to survive cancer, I wonder whether I’m giving back more than I’m taking from Earth’s resource pool. I’m not afraid to transition to the next stage of existence, whatever it may be, but my autistic son isn’t ready for me to leave him yet.

If people wish to love well and experience life to the fullest by means of a healthy lifestyle, more power to them. However, when we start seeking to extend life with artificial means, I wonder if perhaps we’re being selfish. Might those resources be better applied towards ensuring good water, food, and health are available for present and future generations?

Braving End of the Tunnel Blues

I’m generally a upbeat person. I try to find something positive in each day, even when the only positive I can find is that I’m still breathing.

But every now and then, lung cancer messes with my head. It’s hard to completely eliminate the memory of an October 2011 PET scan image showing a hot spot outside of my chest, my pulmonologist calling after the biopsy to say my lung cancer had metastasized, my oncologist apologetically estimating I had perhaps two years to live. (Granted, he only gave me a prognosis because I pressed him for one. He has since happily recanted.)

I’ve already had two recurrences, both found just weeks after the end of a chemo regimen. I will be in treatment for the rest of my life. My current targeted therapy has eventually failed for everyone who’s taken it. Chemo eventually stops working because the cancer develops resistance to the drug.

Every two months I have another scan to see if the cancer has progressed yet. My cancer is aggressive and smart. When a treatment thwarts its goal of world domination, it mutates and renews its efforts. And the next treatment option may or may not be effective.

Every now and then, these facts overwhelm me, and I cannot stay positive.

Many people who experience near-death report that when they died, they saw a tunnel, walked through it, and emerged into the light before they were brought back to life.

Every now and then, the facts overwhelm me, and I see that tunnel, or at least this end of it. I become acutely aware of what cancer has stolen from me, and how little time I might have left. I start thinking of important tasks I want to finish before I die, of family I will leave behind, of experiences I will never have again.

I call it “End of the Tunnel Blues.”

When it hits, I usually brave it in silence. Few people want to dwell on my possible impending demise. Some are gobsmacked and uncertain how to feel or respond. Others feel compelled to make me feel better. It seems the only people comfortable talking about such things are those who have seen their own tunnel. Other incurable cancer patients like my friend Jay Lake know.

The feeling usually leaves after an hour or two, but each episode leaves a mark on my soul.

If you have a friend facing a life-threatening or incurable illness, they may have periods of the End of the Tunnel Blues. If they mention it to you, try not to freak out. It’s normal. Just listen and, if you can, let them know you’re honored they trust you enough to share their deepest feelings with you.

How Not to Say the Wrong Thing

When a friend or family member is dealing with a serious health issue like dementia or cancer, we often don’t know what to say or how to react. We might want to tell them how scared their illness makes us feel, or avoid talking about the elephant in the room altogether, only to see our words make the patient or family members uncomfortable.

Here’s a nice LA Times article about How Not to Say the Wrong Thing. As a cancer patient and family member of elders who had dementia, I heartily endorse these guidelines.

Here’s another perspective, focused on lung cancer. 10 Things Not to Say to Someone With Lung Cancer

Diabetes Slows the Progress of Alzheimer’s

People with diabetes are known to be at higher risk for developing Alzheimer’s disease.  However, the interaction between the two diseases is not well understood.  A French study published 10/27/2009 just found that Alzheimer’s progresses more slowly in people who have diabetes.   An article on says:

“Diabetes is thought to increase the risk of developing Alzheimer’s, possibly because of vascular damage in the brain that mimics the dementia seen with Alzheimer’s.  But once patients display symptoms of the disease, the current study suggests that the progression is slower than in people without diabetes. … One complication may be that the medications used to help control blood sugar have a protective effect on the brain….”

Jumping with Glial

Most of us have heard of neurons.  But have you ever heard of glial cells?   They make up almost 90% of the brain, and science is beginning to explore what they do and how they might contribute to thought.  Originally thought to simply be the “brick and mortar” that insulated neurons,  glial cells are now known to communicate with each other and with neurons,.  They can produce neurotransmitters, and they appear to be essential for forming new neurons and connections between neurons.  Who knew?

Scientific American interviewed Andrew Koob (Ph.D. is neuroscience from Purdue University) about glial cells and why they orginally got no respect.

Concussions can lead to dementia

The “60 Minutes” TV program recently ran a segment on long-term effects of concussions sustained in sports.  First associated with pro boxers, chronic traumatic encephalopathy (CTE) is a condition seen only in people who suffer repeated dazing blows to the head.  It is  diagnosed after death by examining brain tissue for abnormal proteins that show up as dark brown pigment in brain sections.  These proteins are neurofibrillary tangles of tau, which are also characteristic of Alzheimer’s and other dementing illnesses.  CTE has been diagnosed in the brains of several deceased pro football players over the past few years.

Dr. Ann McKee, a neuropathologist at Boston University School of Medicine, has been working on a brand new area of research on the brain that has provided physiological proof of brain disease in athletes who have suffered concussions.  …

“I’ve looked at brains from people that have lived to be 110. And you just don’t see anything like this, what we see in these athletes,” she told Simon

Even more troubling, she says, CTE actually progresses undetected for years, silently eating away at brain cells, until it causes dementia and other cognitive problems.

“It seems to be triggered by trauma that occurs in a person’s youth; their teens, their 20s, even their 30s. But it doesn’t show up for decades later,” she explained. “People think it’s a psychological disease or maybe an adjustment reaction, maybe a mid-life sort of crisis type of thing. But actually, they have structural disease. They have brain disease.”

Dr. McKee’s research found that athletes in any contact sport are at risk of permanent brain damage.

You can see the video and

In retrospect, I sure am glad dear old Dad (a general practioner) forbade me from playing contact sports while growing up!

Why Is the “Placebo Effect” Getting Stronger?

The brain has an amazing capacity to help the body heal itself.  The “placebo effect” was first described in a 1955 medical paper:  people given a harmless sugar pill – a “placebo” – will feel less pain if they are first convinced the pill is a medicine that effectively relieves pain.  Placebos are effective for a variety of symptoms like depression and stomach ulcers, too.

Since 1962, the US Food and Drug Administration (FDA) has required drug makers to prove a new medicine is more effective than a placebo before it will approve the drug for market.  For some reason, placebos seem to be more effective than expected in drug trials between 2001-2006, especially for meds targeting the brain and central nervous system.  As a result, more new drugs fail to pass FDA approval because they don’t produce results better than sugar pills.  Even old standbys like Prozac are proving less effective against placebos than when they were first tested in the 80s.

The increase in placebo effectiveness is significant enough that the NIH is studying the phenomena, funded by big pharmaceutical companies.  Wired Magazine has a great article on the increase in placebo effectiveness here.

One study mentioned in the article talks about the placebo effect in Alzheimer’s disease (AD) patients.  To be effective, placebos require the patient to have cognitive ability – you have to understand what the pill will do for you before your brain will activate your body’s natural response.  A person with AD may have suffered enough brain damage that they’re unable to grasp that concept.  As a result, AD patients generally require more painkiller than the average person because the AD patients don’t get the benefit of the placebo “boost” in effectiveness.

I anxiously await the study’s results.  It would be wonderful to learn how to make the placebo effect more powerful and let our brains do more to heal us.