2 posts tagged “David”

Meet David from the PatientsLikeMe Team of Advisors

Posted February 3rd, 2016 by

We’d like to introduce you to David, another member of your 2015-2016 PatientsLikeMe Team of Advisors. David has been living with Stage IV lung cancer for four years and hopes to be an inspiration to other cancer patients.

He has worked to raise awareness for his condition as a political advocate for the NGO Lung Cancer Alliance. And as a retiree, he stays active by cycling, gardening and baking bread.

Here, David stresses the importance of forging a strong partnership with his care team and reflects on what he calls “some of the best years of my life.”

What gives you the greatest joy and puts a smile on your face?

Knowing at the end of a day that my time was spent wisely and productively. To me this means, like any other person, I have accomplished one or more tasks that are important to me. As a retiree each accomplishment mostly orbits around my avocations that include (1) road cycling (2) gardening or working in my greenhouse (3) baking artisan bread (4) photography and (5) traveling. Each avocation reinforces my emotional well-being and belief that despite having a terminal disease (Stage IV Lung Cancer) I can live like any other retiree and enjoy my life. I have successfully adopted this mental framework for the past four and a half years and know that my disease does not define me. Equally important, I have demonstrated while cancer maybe active in my body, my mind has the power to control my response to the disease. I have chosen to embrace life through my hobbies; I successfully rejected the alternative, which is to fold and identify myself as a hopeless, depressed, terminally ill cancer victim. How ironic that the years since I was diagnosed with cancer have been some of the best years of my life.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

While nobody has directly asked me what is it like living with Stage IV lung cancer, a terminal disease, I suspect many people want to know. Outwardly, they see me living a normal if not an envious life and simply cannot comprehend how mentally this is accomplished (without folding) knowing that I have a terminal disease. I would tell them that advanced lung cancer patients can be grouped into two large cohorts.

The first group represents 80% of all NSCL lung cancer patients that do not have equal access to breakthrough therapies and are treated with traditional chemotherapy and radiation. These treatments exact a toll on the physical condition of the patients, and others often experience the person as looking sick. Then there is a much smaller group (20%) that can benefit from breakthrough therapies, which are called targeted and immune therapies. I fall into the targeted therapy group where you take a pill(s) that controls the cancer without the debilitating effects on the body of those that receive traditional therapies. This is why people who know that I am sick greet me with the words “Dave, you look great.”

Despite this façade, living on targeted therapies has significant psychological consequences. Dr. Vicki Jackson, chief of palliative care at MGH, commented on the emotional state of long-term survivors living on targeted therapies: “It’s amazing, because people can live like they don’t have cancer, just by taking a pill. But patients either expect it’ll happen forever, or the roller coaster ride of waiting to see whether there’s another trial drug…gets incredibly stressful.” Truer words were never spoken. The life that I live becomes soul searching every two months before my next scans. What will be the outcome and how might it impact my long-term journey with advanced lung cancer? Emotionally the ritual is wrenching to the psyche.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

My advice to a person recently diagnosed with lung cancer would be to take a protracted deep breath so that you have time to absorb the shocking news your provider delivered to you. Once your equilibrium has been restored, develop a partnership with your oncology team so that you can informatively participate in your treatment options. Given your situation, be chary about popping the big question “How long do I have to live?” Your blunt question makes your provider respond in kind and the answer may not serve you well. No one lung cancer presents in the same way. Our immune systems are unique and how our disease responds to a treatment modality can be very different from others treated like yourself. For example, my surgeon told me I had one to three years to live. In December I will be alive for four and a half years living through targeted therapies as though I did not have lung cancer.

The more self-serving first question to ask your oncologist is if a DNA analysis designed to reveal mutations in your tumor has been performed. This is extremely important because the answer will help you and your providers to decide where and how you should be treated. If the analysis reveals the tumor harbors an activating mutation, for which there is a targeted therapy, then where you are treated can become a critical question. If clinical protocols are not available at your hospital do you make the decision to travel several hours to another hospital to enroll in a clinical trial? Know that research data shows that targeted therapies can significantly extend the progression free survival of a patient. Alternatively, if no activating mutation is found does it make a difference in outcome if I am treated locally versus being treated at a research hospital?

For the newly diagnosed my final words of wisdom would be to cautiously use the web for information. There is a natural tendency for our minds to go to dark places in this situation. The web offers a plethora of data to reinforce the darkness, which may compound depression and a sense of hopelessness. What is most important in the early stages of your journey is to form a good partnership with your oncology team and to find an anchor that shines a light of hope and promise in the dark spaces of your mind.

How can you use life insurance to reduce the financial burden associated with lung cancer?

People purchase life insurance for a variety of reasons so that families can absorb the loss of income when you pass. Typically, families need money to pay off medical bills, pay off a mortgage and to provide a spouse to give the family time to readjust to a new standard of living. Most people purchase term insurance which insures people for a stated period of time. Buried in some of these policies is a benefit sometimes called Accelerated Death Benefit or Living Benefit. This policy benefit is intended to help ease the financial burden of an individual who has a terminal disease and is expected to die within six or twelve months of their diagnosis. By default, stage four lung cancer qualifies for this benefit. Therefore, without question this allows a policy holder to cash in half of the value of the life insurance policy. The money is considered a death benefit and is not taxable. The other added value to the family is that the premium on the policy is reduced by half.

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Q & A with Dr. David Casarett, author of “Stoned: A Doctor’s Case for Medical Marijuana”

Posted July 22nd, 2015 by

If you’ve been following the blog lately, you might already know Dr. David Casarett – he’s a professor at the University of Pennsylvania’s Perelman School of Medicine and the author of “STONED: A Doctor’s Case For Medical Marijuana.” He recently worked with PatientsLikeMe on a survey that asked members how they felt about marijuana, and the results were just released last week. Below, read what David had to share about the inspiration behind his novel, his thoughts on online communities like PatientsLikeMe and the intertwined future of marijuana and medicine.

 

What inspired you to write “Stoned: A Doctor’s Case for Medical Marijuana?”

A patient – a retired English professor – who came to me for help in managing symptoms of advanced cancer. She asked me whether medical marijuana might help her. I started to give her my stock answer: that marijuana is an illegal drug, that it doesn’t have any proven medical benefits, etc. But she pushed me to be specific, in much the same way that she probably used to push her students. Eventually I admitted that I didn’t know, but that I’d find out. I then learned of the use of cannabinoids like cannabidiol for pain, obesity, anxiety, and more. Stoned is the result.

Inside the book, you say “For Caleb. I hope he found the relief he was searching for.” Can you share a little about his story and why you dedicated the book to him?

I describe my meeting with Caleb in the first chapter. He was a young man with advanced colorectal cancer who drove his RV to Colorado to get access to medical marijuana. He got there, and marijuana was legal, but he couldn’t afford it. He had access to other legal drugs like morphine and ativan through his hospice, but he didn’t use them because they didn’t work for his pain, and made him feel sick. The only thing that worked for him–marijuana–was out of reach.

Sounds like you went through some interesting research experiences while you were writing the book. (Pot wine? Marijuana paste on your leg?) How did those experiences influence your perception of marijuana as medicine?

I was trying to understand what the best way is to get the “active ingredients” of marijuana into people. I saw lots of ads for various methods, and all sorts of products are available, but I wanted to know what works. It turns out that some methods, like marijuana tea or beer or wine, aren’t very effective. But others, like vaporizing, definitely are.

What do you think is the biggest misconception about marijuana in the medical community?

The biggest misconception about marijuana in the medical community is probably that it offers no medical benefits. At least, that’s what I thought when I started researching Stoned. Actually, there have been some good studies that have shown very real benefits for some symptoms. True, there isn’t as much evidence as I’d like. But there will be more. New research is coming on line every year, and we’re gradually figuring out whether and how marijuana works.

How do you see online communities like PatientsLikeMe contributing to the medical marijuana discussion?

I think the biggest potential contribution of PatientsLikeMe is a source of crowd-sourced science. Medical marijuana science is lagging far behind the way that people are using it. For instance, in researching Stoned, I spoke with dozens of people who were using marijuana to treat the symptoms of PTSD, but there haven’t been any randomized controlled trials of marijuana for that use. That doesn’t mean that marijuana doesn’t treat PTSD symptoms, just that we don’t know (yet) whether it does. Additionally, these communities can work together to publish guides on where to buy cannabidiol near them and stores that they recommend based on their experiences to help new patients.

We need randomized controlled trials, but those trials will take time, and money. That’s where communities like PatientsLikeMe come in. We can learn from PatientsLikeMe members what they’re using medical marijuana for, and how. And we can learn whether they think it’s working. Those reports can help patients learn from each other, and they can help researchers figure out what to focus on.

What did you find most interesting about the PatientsLikeMe survey results?

I was surprised that 87% of people weren’t at all concerned about becoming addicted or dependent on marijuana. We know that although the risk of addiction is small (about 10%), it’s very real. That risk probably isn’t enough to convince most people to avoid medical marijuana, especially if it’s helping them. But we should all be aware of those risks, so we can be alert for signs of dependence, like impairment of function, or effects on work or relationships.

You mention that the future of medical marijuana is the most interesting, yet hardest to answer question. But that said, what do you think the future holds for medical marijuana?

Some of the most exciting advances in the science of medical marijuana, to me, are related to what marijuana tells us about the endocannabinoid system – that’s the system of hormones and neurotransmitters and receptors in all of us. We don’t know a lot about what that system does, but we do know that marijuana ‘works’ by tapping into that system. The cannabinoids in marijuana trick the body by mimicking naturally occurring endocannabinoids like anandamide.

So although it’s fascinating to think about what marijuana could do, and although clinical trials of marijuana are essential, the really neat science of the future may focus on that endocannabinoid system – what it does, how it works, and how we can use it to promote health.

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