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Dad, You Have to Inhale

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By James Salwitz, MD

marijuana cancer patientsMy wife calls them “hand-me-ups”…  things we inherit from our kids.  My ex-fashionable shirt that my son wore in college.Our semi-vegetarian diet my daughter adopted in high school. The dog at my feet that came visiting for the weekend, three years ago.

Our lives are enhanced and modified by the most unexpected of teachers, our children. The mentoring of our progeny keeps those of graying years at least partially youthful.  Still, I was astonished to hear this week, the words, “Dad, you need to starting doing drugs.”

The “dad” being addressed is 93 years old and has advancing cancer. He is tired, nauseas, anxious and sleeps poorly.  Though he likely has a number of months to live, he has become withdrawn.  Despite my usual medical brew, his incapacitating symptoms are without palliation.

Dad is miserable.  Enter his daughter with the solution.  The “drug” she is talking about is the treatment de jour, marijuana.

How did this happen?  We raise our kids to be good, honest, mature citizens; we drive them to soccer, suffer through years of homework (do you remember dioramas?), and do the whole college obsessive-compulsive tour thing.  In addition, above all, we beg our offspring to stay away from pot, pills and addictive mind-altering potions.

Now they turn on us, pushing ganja in our time of need. How did we go wrong?  Actually, it is we that missed a great opportunity.

50% of Americans have inhaled marijuana at some point in their lives.  More than 25 million of our neighbors have used it within the last year.  Those that imbibe are of a decidedly younger demographic.  The oldest citizens, especially those of the Greatest Generation, are much less likely to have experience with cannabis.

Fortunately, once again, youth presents the solution.

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The Gift of Cancer

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By Brett Hendel-Paterson, MD

flying cadeuciiAfter my last post about “the gift of cancer” I must say that CLL has felt much less like a gift this month.

Joining the ranks of those with “a diagnosis” has given me a some insight into what our patients face all the time.

Recently, I received my second dose of humility.  I capped off a truly exhausting week in the hospital with a routine lab follow-up.

The last day of my 85-hour week I had my CBC checked, and my platelets dropped from the 100s to the 30s.

My first reaction was denial.  Lab error.

Unfortunately, they dropped further the next day and I realized that the little red bumps on my legs weren’t some skin reaction, but petechiae.  Bummer.  Turns out that in addition to the 2% of people diagnosed with CLL under age 40, I also joined the 20% who develop idiopathic thrombocytopenic purpura (ITP).

The treatment of choice for ITP is prednisone 1mg/kg.  So after a visit with my oncologist, I started 80mg of prednisone.

I realized with more than a little chagrin that I have a double standard about therapeutics. I was surprised at how much I despise being on prednisone.

I had never taken it before, and I would guess that I prescribe it every week, if not every day, that I work in the hospital. I have always felt that prednisone is fine for my patients to take.

Steroids work to help clear up that asthma flare, quickly improve that gout pain, or even help with a burst of energy in the last days or weeks of life for a terminal patient.

But for me? No thank you.

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Traditional Chinese Herbalism at the Cleveland Clinic? What Happened to Science-Based Medicine?

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By David Gorski, MD

flying cadeuciiI don’t recall if I’ve ever mentioned my connection with the Cleveland Clinic Foundation (CCF). I probably have, but just don’t remember it.

Long-time readers might recall that I did my general surgery training at Case Western Reserve University at University Hospitals of Cleveland. Indeed, I did my PhD there as well in the Department of Physiology and Biophysics.

Up the road less than a mile from UH is the Cleveland Clinic. As it turns out, during my stint in Physiology and Biophysics at CWRU, I happened to do a research rotation in a lab at the CCF, which lasted a few months.

OK, so it’s not much of a connection. It was over 20 years ago and only lasted a few months, but it’s something that gives me an obvious and blatant hook to start out this post, particularly given the number of cardiac patients I delivered to the CCF back in the early 1990s when I moonlighted as a flight physician forMetro LifeFlight.

Obvious and clunky introduction aside (hey, they can’t all be brilliant; so I’ll settle for nauseatingly self-deprecating), several of my readers have been sending me a link to a story that appeared in the Wall Street Journal the other day: A Top Hospital Opens Up to Chinese Herbs as Medicines: Evidence is lacking that herbs are effective.

I also noticed that Steve Novella blogged about it and was tempted to let it pass, given that I had seemingly lost my window, but then I realized that there’s always something I can add to a post, even after the topic’s been blogged by Steve Novella.

Whether that something is of value or not, I leave to the reader. So here we go. Besides, if this article truly indicates a new trend in academic medical centers, it’s—if you’ll excuse the term—quantum leap in the infiltration of quackademic medicine into formerly reputable medical centers.

It’s a depressing thing, and it needs to be publicized.

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Whose Cancer Is It, Anyway?

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By “Knot Telling”

flying cadeuciiI recently read a blog by Dr. Danielle Ofri in the New York Times “Well” blog about how as a physician she learned to respect the patient’s wishes even when they contradict her professional inclinations. It’s called Doctor Priorities vs Patient Priorities.”

She writes that the patient is looking through a “wide-angle lens” that takes in the whole of his life while the doctor’s lens is “narrowly focused on the disease that pose[s] the gravest and most immediate risk”. She saw her challenge as entering into dialogue with her patient in order better to understand the wider perspective of his whole life and to work with him to find the most acceptable way to deal with his disease.

If only Dr. Ofri were an oncologist. If only she were my oncologist. My last appointment with my onco, Dr. G, was a disaster. Not only have I not been back to her, I have not gone to any oncologist since then. Part of that is because I don’t want any treatment at this time; that’s still true.

But if I am going to be very honest, and I try to be that always, it is also because of that disastrous appointment with Dr. G.

First of all, she would not respect my decision not to have any more chemo and refused to order any scans unless I would a priori agree to chemo if she decided it was indicated. She also mocked me. It took a long time for me to tell that second bit. In fact, from that day in August 2013 until just recently—seven months!—I only told one or two other people about what happened.

The evening of that last appointment, Dr. G called me at home to continue the argument. I found myself apologizing for causing her distress. Yes, I know that’s ridiculous, but that is how I react to being bullied. Borrowing the words of a friend who really gets it, I apologize to others for their hurtful behavior and then I internalize it. I haven’t talked about Dr. G mocking me because I feel ashamed.

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The Legacy of the Tarceva Diva

By Brian Loew

About three years ago, a new member of our Lung Cancer Survivors Support Community posted a message: she was taking Tarceva and wanted to discuss with fellow members everything about that cancer drug.

She titled her post, TARCEVA DIVAS AND DUDES DISCUSSION & SUPPORT. She saw a need to create a community within a community, and beginning with that modest post, she did it. She didn’t ask permission. She didn’t wait for us, or another member, to organize and lead a top-down discussion about Tarceva.

The ongoing discussion string became the place for our members to go to talk about Tarceva and next-generation lung cancer treatments.

The member became known by some as the Tarceva Diva, and for the purposes of this story, that’s what I’ll call her. This story is not specifically about Tarceva, or even about lung cancer, but instead, it’s a celebration of  an unsung hero who helped thousands of people.

There have been well over 8,000 posts in less than three years’ time–about 250 posts per month–in just that series of hundreds of “Divas and Dudes” discussion strings. That’s a constant, dedicated stream of treatment insights from-the-front-lines of people worldwide affected directly by lung cancer.

“WELCOME TO TARCEVALAND!!!” she’d proclaim to a new member, or “newbie.” She could insert humor into the discussions without making light of the seriousness of members’ illnesses. The activity in the Tarceva sub-community grew so quickly that the Tarceva Diva created another discussion topic, TARCEVA SIDE EFFECT BUSTERS, which created yet another resource for members.

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That Vitamin There Could Kill You

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By James Salwitz, MD

Once-upon-a-time, when a patient said they were taking a vitamin, most doctors would simply shrug their shoulders and say, “well, I guess its OK, it couldn’t hurt.”   There was little research to judge the affect of vitamin supplements, so there was no reason to take a stand.  That is no longer true.

Now we have published data on many vitamins and we can say that for most people they do not work.  More importantly, there is increasing research that says manufactured, chemically synthesized nutriment compounds in a pill, can be deadly.

For this reason, I am likely to ask my patients if they are taking a vitamin and, if so, which fabricated additive and how much.  Therefore, I asked Bill, while he was in the office receiving chemotherapy for Hodgkin’s disease, what alternative therapies he was using.

When he informed me that he swallowed a multivitamin (MVI), large doses of Vitamins C and E, as well as a B complex preparation, I advised him to stop.

To my astonishment he responded, “Well, you only want me to do that because you make a lot of money on chemotherapy, and vitamins might put you out of business.”

Bill’s response, he lack of trust in my advice, disturbs me at several levels.  He fails to understand and does not wish to learn the present state of science regarding nutrition. In addition, there is a major problem regarding his perception of my motivations and therefore the veracity of my guidance.

Let us be clear; in the absence of malnutrition, malabsorption and a few uncommon medical conditions, there is absolutely no reason to take a multivitamin.  They do not prevent or fix anything.  Originally developed for starving populations and hungry soldiers during the Second World War, they have no place in a society with access to a broad range of foods.

More importantly, there is increasing data that people taking a multivitamin may become less healthy.

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In Praise of Lisa Bonchek Adams, Breast Cancer Expert

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By Brian Loew


The two columns by Bill and Emma Keller about Lisa Bonchek Adams unleashed fury this week from supporters who questioned the manner in which Adams, who has metastatic breast cancer, “lives her disease” through her blog and Twitter feed.

Amid reams of articles, blogs, tweets and Facebook posts, patient advocate and breast cancer survivor posted Liza Bernstein grabbed our attention for posting a brilliant yet simple observation. Responding to an article in Gigaom, Bernstein noted that Bill Keller wrote this of Adams:

“Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out…”

And Keller went on to describe what those experts thought.

Bernstein and other e-patients know well that Lisa Adams is an expert. In her response, Bernstein said that while Adams “is not a doctor or a researcher, [she] is a highly engaged, empowered, and educated patient who, as far as I know, has never shared her story lightly.”

Perhaps unintentionally, Keller’s supposition that Adams is a “comfort” to other patients compared with the analysis he provides from “cancer experts” marginalizes what people like Adams bring to others affected by cancer.

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N = 1 My Experience with the New Health Care System

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By Robert Fogerty, MD

“You look nice today. People don’t come to chemo in suits very often.”

The friendly and familiar receptionist mentioned as I was checking out, the always full jar of lemon flavored hard candy on the shelf between us. As I pocketed a few of the candies, I managed to swallow the nausea and metallic taste just enough to say, “Thanks. I have a job interview today.”

During my senior year in college, with medical school acceptance letter in hand, I was diagnosed with metastatic testicular cancer. Initially, life became planning surgery and meeting doctors, but early in my treatment course I received a letter that my health insurance had been exhausted and I would no longer receive any health benefits. This was after my first of four chemo cycles, with a major surgery still to come. Needless to say, this was a problem. My parents were both well educated, a lawyer and a chemist-turned-teacher, but this took everyone by surprise and presented a new crisis.

We responded by dividing up tasks. My parents quickly inventoried all the assets, including the family home, and my sister called around to all the hospitals to see what could be done.  She called the local and state governments asking for advice while I simply tried to eat food and get to class to graduate on time; I couldn’t have another tuition bill on top of my health expenses. I also started to look for a job, with a job came insurance – this much I knew.

I went to the interview, a job as a management trainee in a car rental agency, with hopes that this job would be something I could get, could do during treatment, and would provide the insurance that would save my family from financial ruin at my hands – my disease. I went to a Jesuit college and learned that truth and honesty are paramount.  So, I told the recruiter that I had cancer, I was in treatment, and that I would likely be done soon – all true.

I didn’t get the job. I still didn’t have insurance and my next chemo session, with its massive bill, was coming very quickly.
My sister learned that this would not be fun. One hospital said to her that they would treat me and then take us to court to get paid. Thankfully, I went to school in Massachusetts where a law was on the books that allowed me to enroll in health insurance without a pre-existing condition exclusion because my insurance being exhausted counted as a special qualifying event. I enrolled in an individual insurance plan, my care went uninterrupted, and I graduated on time. To this day, my sister and I remain grateful to Massachusetts for that single law, which is as much a part of my success as cisplatin and etoposide, the chemotherapy agents I received.

The bills still mounted, but were manageable. I survived, personally and financially. I pushed off medical school for a few years to get my life back in order, and moved on. I had many scary moments during my treatment, from the plastic surgeon telling me my arm might need amputation to my neutropenic fever to being discharged just in time for my college graduation.  However, what bothers me the most was, and stillis, the sense of abandonment from my society when my insurance ended.

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Think You’re Young and Invincible? You’re Young, Yes. Invincible? Maybe Not.

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By Kathleen Reardon

Life was getting underway the day I found a suspicious lump. My first book had just been published and was being received well in my field. I was traveling and speaking about a new research project. The phone kept ringing and there was little time to think.

I figured that was the reason why my weight was falling. It was one of those good side benefits of a busy schedule. Why worry about a pea-sized lump? Lots of women have those and they turn out to be nothing. Coincidentally, that was exactly what my gynecologist said it was: nothing but a cyst.

Two more visits to that doctor resulted in him telling me that, at my age and with my family history, there was nothing to worry about and I should get on with life. He refused my request for a mammogram, suggesting that I should relax. I gave relaxation a try until a friend told me, “You look bad. If you don’t go see your GP for another opinion, I’m not going to talk to you.” There were dark lines under my eyes and I was becoming tired and downright skinny. I took her advice. It was cancer.

When I read about young people declining to sign up for health insurance, I remember back to that time. Sure, it’s great to be young. One of the best things is thinking you have a long time before you need to worry about your body giving you major problems. And isn’t life a gamble anyway?

I’m sure many young people reason this way and to some extent they’re right. Having spent a significant part of my career studying how people reason about health, it’s no surprise to me that weighing the odds causes a good many of us to take risks.

Yet, there is no such thing as a “young invincible,” the term currently bandied about to describe adults under the age of 35.

It’s not their fault if the system is unresponsive when they attempt to learn their insurance options. But it is their responsibility, to themselves and their families, to make sure that if something does go wrong — as it often does — their insurance will afford them the care that could save their lives.

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My Wife Has Cancer. I Need to Know: Will She Have Insurance On January 1st?

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By TONY JEWELL

On February 16 of last year, I was in a New Orleans hotel room preparing for a meeting when my wife Becky called and said simply, “I have cancer.”

We knew it was possible, but that didn’t in any way lessen the impact of those three words.

I have cancer.

Everything that was right and comfortable was in that instant washed away by a million questions with no answers. At a time when we needed nothing more than certainty and clarity, there was only confusion and doubt.

Upon landing in Philadelphia hours later, I called to see how she was doing with her newly diagnosed breast cancer. Feeling numb, I managed to make one other call soon after landing. Not to friends. Not to family. Instead, it was to our insurance company.

That’s right: Other than my wife, the one person I most wanted to speak to in the world was a Cigna call center operator.

We hadn’t even had a chance to meet with her oncologist to discuss potential courses of treatment, but we had questions because we had recently changed our plan to carry higher out-of-pocket costs and lower deductibles. We needed answers to those questions so we could go about worrying about more important things.

What procedures are covered? Are the doctors at the cancer center in plan? What is the maximum out of pocket? What other limits should we know about?

A 15-minute conversation later, we were comfortable that insurance wouldn’t be an issue and had a decent understanding of what our share of the costs would be. At a time of absolute fear and confusion, our insurer provided a moment of comfort and clarity.

That is the kind of financial and emotional stress that millions of people face every day in the United States. That is also the kind of financial and emotional security the Affordable Care Act was supposed to provide — especially to those who currently lack health insurance. Continue reading…