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The Basics of PD-1

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Several clinical trials for lung cancer (as well as other cancers) are pursuing therapies based on the PD-1 pathway of the immune system. These trials can usually be found on clinicaltrials.gov by searching with keywords such as PD-1, PDL-1, or PD-L1. Sometimes these therapies are referred to as anti-PD-1 or anti-PD-L1.

PD-1 (PD stands for Programmed Death) is part of an immune system “checkpoint” pathway that, among other functions, helps turn tumor suppression on or off. PD-1 is actually a protein expressed on the surface of certain cells in our immune system; it is NOT a mutation, but rather something inherent in everyone’s immune system. The cells of interest in these trials are activated T cells, but PD-1 is expressed on other types of cells, too. The PD-1 protein is a receptor, which means another molecule can bind to it.

PD-L1 is a protein of the surface of some (but not all) tumor cells. It is a ligand of PD-1 (hence the “L” in its name), which means it binds to the PD-1 protein. When PD-L1 binds to PD-1, it tells the immune system to ignore the tumor cells. PD-1 has one other known ligand (surprisingly named PDL-2).

PD-1 and PD-L1 therapies aim to blockade the PD-1 pathway so the immune system can better attack cancer tumors. The drugs used are designer molecules that bind to part of the PD-1 pathway and block its activity. Some drugs bind to PDL-1 so it can’t bind to PD-1. Other drugs bind to PD-1 to prevent ligands from binding to it. Both approaches aim for the same effect: keep the PD-1 pathway from telling the immune system to ignore tumor cells.

Not everyone responds to PD-1 pathway therapies. Early trial results show lung cancer patients had response rates on the order of 10% to 18%. Researchers are studying whether biomarkers — proteins such as PD-L1 on the surface of immune system or tumor cells — might indicate which patients will respond well to PD-1 therapies. That is why some trials (but not all) require a biopsy for testing before accepting the patient into the trial.

Since part of the immune response for suppressing tumors involves inflammation, participants in trials based on the PD-1 pathway often find their tumors will grow somewhat when they first start the therapy. A few lung cancer trial patients experienced serious or fatal pneumonitis, a lung inflammation.

PD-1 therapies are promising enough that at least four drug companies (Bristol-Myers Squibb, Roche/Genentech, Medimmune and Merck) are pursuing them in lung cancer trials. Because they modify the immune system, the hope is that these drugs will continue working longer than targeted therapies do.

Please let me know if you find this sort of article helpful.

Edited 2013-09-12 12:53 PM PDT to add information.

A Measure of the Seasons

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Today is our family’s Cider Making Day, one of several at our home.

Apple harvest in our Western Washington home orchard runs August to October. We have six varieties of apples that ripen at different times. Yesterday hubby Gerry and son David harvested about 60% of our Elstar and 50% of our Liberty apples, and collected apples dropped from the Chehalis and Spartan trees. About 100 pounds of these will go to the local foodbank. We’ll use the rest for cider and storage.

The first step in making apple cider at our house is washing off kaolin clay, a natural mineral Gerry sprays on our apples to make them less attractive to apple maggots and coddling moths. Next, we quarter the apples and cut out any bad spots (some maggots and moth larvae still sneak in)—this takes the two of us two to five hours, depending on how much cider we want to make and how much trimming the apples need. Gerry and David then press the cider outside in a custom-built wooden cider press. The product tastes amazingly like eating a fresh, tree-ripened apple. We’ll have gallons to last us through the coming year.

Washing apples for cider

The cider press

Making apple cider is a measure of the seasons in our house – we’ve been doing it about 15 years, since the trees Gerry planted in 1994 started bearing enough fruit. Over the past 29 months, it’s become a measure of my cancer seasons as well.

In September 2011, I had recently finished my first line of treatment (seven weeks of concurrent chemo and radiation). I was tired and weak. Instead of standing at the sink to cut apples, I had to sit on a stool, and I only lasted about an hour or two. I had a recurrence in October 2011. It was a terrible shock.

In September 2012, I had recently finished my second line of treatment (five months of chemo followed by six weeks of radiation). I was fatigued, but able to soldier through an entire batch of cider apples while sitting. I had a recurrence in September 2012. It was an unpleasant surprise, but I had a plan, and entered my current clinical trial shortly afterwards.

In September 2013, I’m in my third line of treatment (just finished my tenth month on Xalkori). My legs, feet and hands are achy from cumulative neuropathy and edema from treatments past and present, but I have energy and can once again stand at the sink and enjoy cutting apples while discussing matters great and small with my mate for hours. My next scan in is October. If I have another recurrence (and it will happen eventually), I know I’ll either have local treatment of the metastasis, or switch to another trial at University of Colorado.

Next year, my family will make apple cider again. Life goes on.

Coping with Side Effects

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I have a 20-pound lifting limitation on my right arm from radiation damage. My right brachial plexus — the nerve bundle that controls the right arm — took a full dose hit last summer.

I take an engineering approach to such limitations. I find myself looking at boxes I need to move and thinking, “If I take out these books, then the box is only 40 pounds, and if I divide that by two arms …”

I do not tell my radiation oncologist about these moments.

I hope he’s not reading my blog today.

Still Dancing — OK, Walking — with NED

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My August 12 PET-CT scan still shows No Evidence of Disease (NED). Woohoo! Having completed 10 cycles on Xalkori without progression, I now go to Denver at 8-week instead of 4-week intervals for my ROS1 clinical trial, and have labs drawn at my home clinic between Denver visits.

I have muddled my way through hamstring rehab and am back to VERY basic strength training with light aerobic exercise on the recumbent bike and treadmill. The best description I can find for my state of fitness is “wimpy.” If I walk one city block here at sea level at a moderate pace (about 2.5 mph), my breathing speeds up a good bit and my heart rate rises to 140! I have to use an oxygen compressor to walk in Denver without gasping or stopping after 500 feet. The persistent Xalkori-induced edema isn’t helping.

The physical therapist tells me it will take a looooong time to rebuild the muscles that have atrophied due to disuse and cancer treatment. I made sure she gave me clear guidelines about pacing my recovery, because, as you all know, I’m SO good at taking things slow.

I’ve developed something called “trigger finger” in my hands, and the oncologist says he doesn’t think it’s related to taking Xalkori (although edema might play a role). Because of this and some other issues, I’ve scheduled an appointment with my primary care doctor to discuss whether my thyroid is starting to misbehave in response to the radiation dose it received last year. However, other non-cancer conditions could cause my symptoms, too. Rather than diagnose myself (I know, I know — why stop now?) I’ll hear what my PC doc thinks.

So, here I am, just taking life slow, glad I’m around to enjoy the magnificent Pacific Northwest summer. I’ll be speaking at the World Science Fiction Convention in San Antonio this year over Labor Day, then mostly hanging around the house attempting to declutter and find the floor of my den once again.

Wait …

Wouldn’t it be wonderful if I could actually HIKE somewhere next year? Or take a cruise in the Mediterranean? Or …

My Worldcon Schedule

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Over Labor Day weekend, I’ll be a program participant at LoneStarCon 3, the 71st Annual World Science Fiction Convention in San Antonio, Texas. I usually sit on hard science panels at conventions. Here’s my schedule for this Worldcon. Hope to see some of you there!

The Practice of Space Medicine
8/29 Thursday 15:00 – 16:00
Whether you’re suffering from a case of Andorian shingles or just a mild version of numb tongue, you can be sure that our panelists have a higher patient survival rate than Dr. McCoy. What really happens when you have the flu in space?

Scientific Literacy vs Human Knowledge
8/30 Friday 13:00 – 14:00
The entirety of human knowledge is growing constantly. How can we even decide what the baseline of scientific literacy should be? What’s the process by which the baseline changes?

The Future of Medicine
8/30 Friday 18:00 – 19:00
What ever happened to farmacology? Is the futue of medicine all about genetics? Our panelists will predict the future for you.

Can Machines be Conscious?
8/31 Saturday 13:00 – 14:00
Inventing a better Türing test: neuroscientists are coming up with new definitions of consciousness. They also seek to determine how to measure consciousness.

Using Philosophy to Analyse a National Health Service
8/31 Saturday 15:00 – 16:00
Health is important, but health systems are often criticized, sometimes with good reason. Perhaps philosophy is needed to make premises clearer? Who should be treated, how, and where? Is “more health for the money” valid, or should we consider quality? What are the technology challenges, like ICT? Can we treat more old people at home? Should the patient just be patient, or become a stakeholder?

Stroll with the Stars Sunday – Alamo edition
9/1 Sunday 09:00 – 10:00
The Sunday Stroll with the Stars will head towards the Alamo, a few short blocks away. It will be led by Alamo aficionado and LoneStarCon 3 Chair Randall Shepherd. Meet Randy in the lobby of the Marriott Rivercenter for his personal tour of this famous Texas garrison. Visiting the Alamo is free; note that you will not be able to take photos inside parts of the Alamo.

Cutting Edge Cancer Research
9/1 Sunday 13:00 – 14:00
A look at what is currently possible in the field in combating cancer.

Moves in the Cancer Endgame

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My dad taught me to play chess when I was small. I learned the game fast, and could soon beat other kids older than me. However, when I faced an opponent who was much more skilled than I, my attention eventually wandered. I lost the endgame because I’d lost patience.

A chess game transitions to the endgame when few pieces are left on the board. Whatever strategy positioned pieces prior to the endgame becomes irrelevant. The pawns, which initially were the least powerful pieces, become important.

Recently I was playing a much more highly-rated player online (thank you, Nancy Kress) and realized something in my attitude had changed: I had developed patience for the endgame. Even though I had been outmaneuvered and did not possess enough pieces to win, I kept looking for my next move. I wanted to keep the game going as long as possible.

Metastatic lung cancer is a tough opponent, and the odds favor it winning. Several powerful treatments didn’t finish it off. I haven’t many therapy pieces left. But I keep searching for my next move, even if it can’t give me victory. Clinical trials are now my best pieces in the cancer endgame. I want to keep playing — and living — as long as I can.

Cancer taught me patience for the endgame. Maybe someone else will learn from how I played.

Insurance Considerations for Travelling Cancer Patients

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Over the past 40 years, I’ve travelled to all seven continents and most of the US states. I didn’t feel much like travelling most of the time I was on cancer treatment, but now that I’m feeling fairly normal on Xalkori, I’ve begun to venture out again.

When I buy expensive tickets on common carriers (airlines, cruise ships, train), I buy travel insurance. Before I was diagnosed with lung cancer, I bought it primarily to cover non-refundable payments in case I had to cancel due to illness or family emergency, or to cover lost luggage and medical expenses abroad. Now that I’ve got metastatic cancer, and I’ve learned how much quality of cancer care varies, I’m more concerned with covering expenses if I have cancer-related problems while on a trip.

The CDC has a good page that summarizes the three types of insurance for travelers: travel insurance, travel health insurance, and medical evacuation insurance. Here’s what I’ve learned from the travels of myself and others.

Travel Insurance and Travel Health Insurance

These policies are usually purchased for a specific trip, and cover the following travel medical problems, along with baggage insurance and other things.

Trip cancellation provides reimbursement for non-refundable trip payments and deposits if I must cancel the trip before it starts. If the trip is expensive — say, a two-week cruise — and purchased many months in advance, I want my deposit and payments to be reimbursed if changes in my treatment plan (say, radiation for a new met) force me to cancel my trip.

Trip interruption provides reimbursement for non-refundable trip payments and out of pocket expenses if the trip is interrupted after it starts. If I have a health problem on the cruise, and the ship departs without me while I’m waiting on a doctor or hospital, I will get reimbursed for the extra airfare to catch up with the ship after treatment, and meal expenses I had to pay out of pocket while I’m off the ship.

Emergency medical and dental pays medical or dental expenses incurred on the trip. Cruise ship doctors are pricey, and expect payment at time of service. Medicare and Medicare supplements usually do not cover medical expenses incurred outside the USA.

Emergency medical transportation arranges and pays to medically transport me to an appropriate medical facility when I need care, and get me home after I’ve received care. More on this under Medical Evacuation Insurance.

Frommer’s has compiled a list of companies that offer travel insurance and travel health insurance. The US State Department has another list of companies that provide coverage for overseas travelers. AAA-hosted trip usually book me through Allianz, and I’ve booked through Allianz myself online.

Medical Evacuation (Medevac) Insurance

If I become severely injured or ill while away from home, I might need an air ambulance to transfer me to a major medical center, or even my home hospital. Such transfers are EXPENSIVE. A friend with cancer paid $20,000 to be flown by air ambulance from Seattle to Kentucky. If you’re overseas, the cost could be $100,000 or more if you’re in a remote area with little medical care available. Travel insurance policies often don’t provide sufficient coverage for this.

Medevac policies can be purchased separately or in combination with travel insurance. Some Medevac insurance providers have their own network of specially-equipped airplanes whose flights are not restricted to airline timetables and routes; other providers are simply brokers that make arrangements for evacuation with contractors. Most medical evacuation insurance companies offer policies that cover the insured on all trips during a set period, be it short- or long-term. Annual policies are typically around $200. Terms and availability vary from carrier to carrier.

Some carriers that offer Medevac insurance are listed below. I don’t have personal experience with any of them; this list is just offered as a starting point for readers.

Allianz
Global Rescue
IMG
MedjetAssist
TravelAssist Network
Travel Guard MedEvac Plan
WorldMed

Buyer Beware

Here are a few lessons learned from my own experience:

1. Read the insurance policy to be sure my specific travel situation is covered. Some policies will allow me to cancel within a short period after purchase if I discover my situation isn’t covered.
For my first trip to Denver for a clinical trial, I bought Alaska Airlines travel insurance through what was then AccessAmerica (now Allianz). The full policy was emailed to me after I bought it. Good thing I read it immediately: it didn’t cover travel for medical treatment! Fortunately I was able to cancel and get a full refund within 10 days, if I hadn’t already left on the trip. Without travel insurance, however, I would have to forfeit my cheap non-refundable ticket if the clinic changed my appointment day. I was able to reschedule a non-refundable flight for free once by playing the cancer card, but I wouldn’t want to rely on that approach.

2. Disclose pre-existing conditions (lung cancer!) and check for pre-existing conditions waivers that might disqualify me for coverage.
Because I have lung cancer, AAA travel agency told me I had to buy non-refundable travel insurance at the time I made my initial deposit on a cruise, months in advance of the trip. If I had waited to buy the insurance, any claims related to my lung cancer would not be covered. My healthy son was able to wait to buy his insurance until he made his final payment for the cruise.

3. Check for dollar limits, deductibles, and terms regarding medical evacuation.
Be sure the coverage limit is high enough to pay for evacuation from wherever I plan to travel. Ask what air carrier the insurance company would use for evacuation from the travel location—they may not have contractors in all countries. Check the policy to see who decides whether I’m sick enough to qualify for air ambulance, and whether I would be transferred to “the nearest appropriate hospital” or a hospital of my choosing.

Celebrating World Lung Cancer Day

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Today I celebrate World Lung Cancer Day.

Lung cancer claims more lives than any other cancer. According to the American Cancer Society, each year, more people die of lung cancer than of colon, breast, and prostate cancers combined. Yet the survival rate and funding dollars per death are lower for lung cancer than for those cancers (and almost all other cancers). The CDC lists lung cancer (not breast cancer) as the leading cause of cancer death among women.

Lung cancer deserves more research funding. Anyone who has lungs can get lung cancer. About 60% of newly-diagnosed lung cancer patients are non-smokers or never smokers, and lung cancer in never-smokers ranks among the top 10 fatal cancers in the USA. And, regardless of one’s habits or behaviors, NO ONE deserves to die of lung cancer.

Already more metastatic lung cancer patients like me are living longer thanks to targeted therapies, maintenance chemo, and changes in standard of care. Lung cancer statistics will continue to improve as more patients start to benefit from upcoming early detection methods (like CT screenings and biomarker testing), improvements in treatment options, and an increased national focus on lung cancer research.

Here’s hoping for more successful treatment options for all lung cancer patients, and a cure in my lifetime — which means SOON.

LUNGevity announces its 2013 Research Awards

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I received the information below in a news release email from LUNGevity today. It’s encouraging to see the research undertaken for lung cancer patients, especially research related to the KRAS mutation (for which few therapies currently exist), lung cancer resistant to radiation therapy, and acquired resistance to targeted therapies (like Tarceva).

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LUNGevity is proud to announce our 2013 Research Awards!

New LUNGevity awards are enabling promising research into managing lung cancer treatment more effectively, as well as preventing the disease in high-risk populations.

Six exceptional researchers have received 2013 LUNGevity Lung Cancer Research Awards. They join a community of brilliant LUNGevity-funded scientists across the country who are working to help people with lung cancer live longer and better.

 

2013 Career Development Awards for Translational Research were made to the following researchers.

Timothy Burns, MD, PhD, University of Pittsburgh Cancer Institute, is working on targeted therapy for non-small cell lung cancer (NSCLC) patients with mutations in a gene called KRAS, using a new class of drugs.

David Kozono, MD, PhD, Dana-Farber Cancer Institute, will identify which genetic types of lung cancer are the most resistant to radiation, and which of these may be best treated with a combination of radiation and bortezomib, a drug already FDA-approved for another type of cancer.

Meredith Tennis, PhD, University of Colorado Denver, will identify biomarkers that signal whether a patient is likely to benefit from iloprost and pioglitazone, two drugs that have demonstrated promise in reducing NSCLC risk, and whether they work in a clinical trial setting.

 

2013 Targeted Therapeutics Awards for Translational Research were made to the following researchers.

Balazs Halmos, MD, Columbia University Medical Center, is working on a way to increase the effectiveness of radiation and chemotherapy that could also lead to personalized NSCLC treatments, especially for the third of all lung cancer patients with locally advanced lung cancer.

Lecia V. Sequist, MD, Massachusetts General Hospital, will develop models that explain how NSCLC patients can acquire drug resistance to targeted therapies after a period of initial successful treatment, leading to the development of new treatments to help patient overcome the drug resistance.

Frank J. Slack, PhD, Yale University, is studying the KRAS-variant, a recently discovered KRAS mutation found in over 20% of NSCLC patients, which has been shown to predict a patient’s response to cancer treatment. His research aims to confirm the role of the KRAS-variant to direct cancer therapy for lung cancer patients and as a potential future target for therapy.

 

The work of these talented researchers will help ensure continued progress in fighting lung cancer. Special thanks to Genentech and our other donors for their support of the LUNGevity Scientific Research Awards Program. Read more about these exciting projects. In addition to these awards, LUNGevity will announce funding for awards through its Early Detection Awards Program later this year. Please stay tuned!

Death and the Cost of Immortality

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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?