Category: Blog

Ross Barkan’s July 17 opinion piece in the Guardian, The biggest threat to journalism isn’t Donald Trump. It’s declining revenues, raises some issues for me, some of which I have been kicking around for a while. The first, in particular, is like a blister that won’t heel because I just keep walking on it.
► What is “fake news”? Is it the spread of false stories – whether fabricated by someone in Eastern Europe with a profit motive, or based on unsubstantiated rumors passed by gossipmongers in the U.S. with too much time on their hands? Or is it someone’s (perhaps Barkan’s “orange-haired and shrill, whining” person’s) judgment that the story should not be judged “news” by the media that publish it?
I’ve thought for some time that the answer to anti-media cries of “fake news” should not be answered with demonstrations of verity but with defense of the publisher’s news judgment. When I see such defenses, I cheer. When I see all the effort put into proving the truth of what we publish, I cringe. It just makes matters worse when we miss the point on this. In particular, it makes things worse when our news decisions are unsupportable. This happens more often than I choose to keep track of.
► What is the “news industry,” which Barkan seems to equate with newspapers when citing Bureau of Labor Statistics data showing that “the industry” employed 411,800 people in 2001 but only 173,709 in 2016? Further, how should we be measuring the numbers when so many journalists today are part of the “gig economy” and so little data is reported on the various segments, nooks and crannies of our industry?
These aren’t new questions; they have been debated for nearly a decade. I’ve been unable to locate recent statistics on journalism employment, and even if I could find those numbers, where would freelancers be reflected? Just thinking about how to count, in today’s messed-up journalism world of for-profit and nonprofit media employees and freelancers, gives me a headache.
► Are rural areas and small towns starving for news, as Barkan claims? Further, is a decline in media covering rural issues responsible for fostering a segment of the population that “cannot believe a single story the media reports”? Or, is the widespread distrust and disbelief of news reports caused, at least in part, by an underlying liberal bias in the mainstream media, bolstered by trends toward mixing opinion with “analysis” in articles published in the news pages?
I admit to being an old-time journalist, stuffy and steadfast in my belief that we need to do our best to remain objective and eschew any public expression of support for subjects of the stories we tell or may want to tell in the future. I was trained by stalwarts of newspaper and magazine journalism who taught me these values, and I was employed for decades by a company whose stock in trade was tied up in the need for complete accuracy and objectivity in our published information. That’s my background, and I’m sticking to it.
Now, about Barkan’s premise that media covering rural issues are dying: this isn’t quite true. I remember the time when, throughout the country, small-town local reporters were “neighbors” and the editor-in-chief was “a town fixture.” Recent presentations I attended featuring new small-town editors and reporters lead me to believe that time is not over yet, and in fact is on its way back in many areas of the United States.
Al Cross, director of the Institute for Rural Journalism and Community Issues at the University of Kentucky, agrees with me on this point, though not without qualification “In some areas there has been a resurgence of local journalism, because there will always be a demand for news of one’s locality, but that hasn’t reached most communities,” he wrote in an email. “Conversely, community journalism remains the strongest part of the traditional news business, partly because its local-news franchise is unchallenged in most places.” It’s part of the future of journalism, whatever that turns out to be.
I don’t quarrel with Barkan’s main premise, that the biggest threat to journalism today is declining revenues. An increasing share of ad revenue is indeed going to Google, Facebook and other online giants, and the need to pay for classified ads is greatly diminished by Craigslist. I agree with him that hope lies in finding an economic model in which journalism works as it’s supposed to, shedding sunlight on the workings of government and telling stories that inform us about things beyond our ken.
So, there’s work to be done, and here’s one place to begin: Think how much good it would do for the profession to have news outlets in far-off places teaming up with independent journalists throughout the country to ensure that editorial directors and their readers, viewers and listeners have a better sense of the mood of the country than they had in the 2016 election.
Maybe, just maybe, it would help turn around the thinking of those who now “only see a live journalist if one swoops in during a presidential election – or one never shows up at all.” Collaboration between media outlets and freelance journalists across the country should be part of the fix for what ails us, whatever that turns out to be.

One question I wanted to ask Dr. Evan Lipson today at Robert’s follow-up appointment at the new Sidney Kimmel Cancer Center at Sibley Hospital was, what does it mean for a melanoma patient to reach the five-year milestone after apparently successful resection of his cancer?

Looking back wistfully at the days when I had “general knowledge” about cancer with no personal connection, I still consider five years as a time to breathe a deep sigh of relief. I haven’t been sitting around worrying about the potential for Robert to have a recurrence, but one thing I’ve acknowledged since we passed the five-year mark on June 18 is that it won’t surprise me if it happens.

My question for Dr. Lipson was based on anecdotes I remember from a few years ago, when I was still monitoring the Melanoma Research Foundation’s Melanoma Patients Information Page regularly. I remember reading about several survivors whose cancer came back after seven to ten years with no evidence of disease (N.E.D.), and I wanted to know if melanoma is different from other kinds of cancer in this respect. Does it recur after five years more frequently than other cancers?

Dr. Lipson said yes, melanoma comes back after five years. However, he explained that five years is not necessarily considered a milestone for the chance of the cancer returning. Instead, it marks a point at which some follow-up testing, like xrays, CT scans and MRIs, is ordered less frequently in N.E.D. patients because the risk of continuing exposure to radiation outweighs the benefits of earlier diagnosis. That doesn’t mean the chance of a recurrence or finding a new lesion suddenly drops off; it continues to decline gradually, as it has been doing thus far.

A sigh of relief for Robert, perhaps – he will be glad not to drink “milkshakes” with isotopes in them as often and will have less fear of beginning to glow in the dark. One more six-month interval, which will bring him to the end of the five-year follow-up study since he completed the GVAX clinical trial at Hopkins after his melanoma was resected. Then the frequency of follow-up scans will most likely reduce to nine months, and eventually to one year.

Robert’s question for Dr. Lipson was about the research he participated in. He asked whether the new studies and treatments have eclipsed the research the Hopkins team and other melanoma specialists were doing with vaccines in N.E.D. patients five years ago. The answer: cancer vaccine research has advanced, including for therapies that can be given to patients with tumors that can’t be fully resected. For example, the Food and Drug Administration has approved Phase 3 research into the TVAX vaccine for treating brain and kidney cancers, and the research has entered Phase 2 for melanoma and seven other cancers.

One important thing about this research for melanoma patients is that this vaccine may have a longer-lasting effect than the recently approved adjuvant therapies, with fewer risks and side effects. With the vaccine therapy, some cells from the patient’s tumor are combined with an immunotherapy agent and injected back into the patient to generate an immune response against that tumor. Some of the cancer-fighting cells the body creates in the immune response are removed, made to reproduce in the lab and then infused back into the patient to immunize him/her against recurrence if the cancer has not been completely removed or has already metastasized.

Whew! Hope I got that all right! In case it’s still too complicated, I’ll give you this simpler explanation, the one that persuaded us not to go with a chemotherapy treatment when Robert enrolled in the GVAX trial in 2012. Chemotherapy is nasty; better to prevent recurrence with a vaccine if possible. Little risk from trying, so why not?

OK. I’m ready to move away from melanoma again for a few months. Let me know if you have questions – I’ll try to answer!

High on my wish list for news and feature editors advertising for freelance journalists is to tell us how we fit into their publishing plans. All too often, it’s difficult to tell from the ad or call for pitches whether this opportunity fits into our work plans.
If content providers would say what they mean and mean what they say in their postings, we could save a lot of time – ours and theirs – by not applying for unsuitable gigs. Here are various scenarios gleaned from recent postings seeking freelance journalists:
Their business model includes regular contributions from independent journalists, perhaps because they want to air features and reports from a variety of voices.
They need coverage in an area (geographic or subject matter) where they don’t have staff reporters and are looking for top-quality freelancers with knowledge and connections to provide it.
They are contracting work to a freelancer while determining whether a new product or area of coverage will work.
They use freelancers to fill in for employees on leave or to cover occasional shifts.
They post the job status as freelance so they don’t have to put someone on the payroll.
I say “yea” to the first two, “ok” to the third if it’s fully disclosed in the notice, but “no” to posting freelance jobs to fill staff positions without hiring. It doesn’t matter whether the gigs or shifts are full- or part-time, regular hours or on-call. These days it may not even matter whether the work is done in-house or remotely.
All too often we find ads like “Senior Digital Producer – Full-Time freelance with the opportunity to turn into a permanent position” or “full-time freelancer with health benefits to work on features and front-of-book/back-of-book.” Or this one for a sports copy editor, clearly a newsroom job under supervision of a higher-ranking editor: “Enter data into website. Provide assistance with editing process. Answer phone calls, help compile roundups, and edit stories.” These are clearly staff, not freelance, positions and should be advertised as such.
Many media companies post for freelancers because employees cost more. Like all employers, publishers and broadcasters must withhold and match employee payments for Social Security and Medicare in addition to paying for state and federal unemployment insurance. These workers also generally are covered by wage and hour laws and workers’ compensation insurance. These “benefits” cost employers not only money but also time for compliance. Hiring freelancers is one way to get around that. As a result, journalism is among the industries that frequently don’t comply with the state and federal worker classification rules.
Independent journalists with years of experience say there are other reasons media companies prefer to post freelance gigs. Here are a few:
They can get quality work done cheaply by laid off and early-career journalists.
They don’t care about the quality of the work – they are just looking for cheap content.
They have no intention of paying and are less likely to face a meddlesome collection action from an independent worker, particularly one working remotely.
Some readers might discount the intentional abuse the latter reason connotes, but many long-time freelancers are convinced this problem is more widespread than we know. As for the lack of care about quality, we have the option to say “no” to cheap work that wastes our time, and shame on us if we agree to do it and then complain. But shame on them if they take advantage of our colleagues’ unintended employment situations.
Classifying a worker as an employee vs. independent contractor is important to companies for tax and legal reasons – specifically relating to employment tax and labor laws. The classification depends not on how much money a business has in its budget, whether the work is done in a certain place, or even how much value the business places on the work. In the U.S., according to the Internal Revenue Service, it relates solely to whether the person or company doing the hiring has control over what work will be done and how. Some states go further, with presumptions that workers are employees if they perform substantially similar functions as employees.
To media companies that look at experienced professional journalists as a source of cheap labor, whatever their circumstances, I say “shame on all of you.” You contribute to the smog surrounding our profession today. You need to clean up your act and help us all get to a better place for journalists to fulfill our role as watchdogs, educators and providers of information to the public.

Hi Gabriel,
Grandpa and I have an uninvited house guest, and soon there may be little ones!
About 10 days ago a robin came with her mate and started to make a nest over our front door. We were worried that she would be disturbed by our going in and out all the time, so we kept taking the mud and grass down. We kept that up for two days, but so did the robin couple. Every time we took it down, they started over again.
Eventually we gave up because it was apparent to us that these robins were intent on making their nest right there, in a place that is protected from bad weather and predators.
After the nest was complete, we noticed the female robin hanging around the nest quite a bit. I’ve learned from reading about robin behavior that the female will typically lay one egg a day for four days. Then she nestles into the nest to incubate the eggs. Most of her time is spent there for the next 10 to 12 days, until the babies break out of their shells.
I wasn’t able to take a picture of the eggs because I have no way to get above the nest without disturbing the female robin. Here’s a photo of her incubating the eggs.
 
Because the nest is right over our front door, Grandpa and I have been going in and out of the side door most of the time. The female robin leaves the nest every time the front door opens, and we are afraid that if we cause her to leave the nest too much the eggs won’t get enough warmth and the hatchlings (baby birds) might not be strong enough to break out of their shells.
She also leaves the nest to eat, drink and “go about her business,” and when she does, the male comes to the ledge over the door to guard the nest so that no predators can steal the eggs. Here’s a photo of the male robin looking inside.
 
I’m going to visit GramEl in Florida this week, and it’s possible that the babies will hatch while I’m away. I hope Grandpa will tell us any news of the robin family while I’m away.
If you want to know more about robins and their nests, you can find some information here. At the bottom of that page there are links to even more information about robins.
Love,
Grandma
 

Sometimes when I think about pitching stories to new clients, I just get the willies. Sometimes, though, it verges on full-blown terror.
This has always been so – and for me, “always” means a long time. I first started freelancing early in my marriage to a newspaper reporter whose employers wouldn’t hire employees’ spouses. Working for the competition wasn’t acceptable either, so most of my first decade as a professional journalist was freelance. In those days everything was done by snail-mail, and how I dreaded opening the mailbox!
The first rejection letters didn’t bother me, but after too many in a row I came to dread even sending a pitch.
Eventually I landed two steady gigs – writing for a new city magazine in Norfolk and producing a monthly tabloid published by a Tidewater-area faith-based organization. Pitching established clients was much easier, I found. Story pitches were less personal, and rejections were always followed up with new ideas from both sides.
Fast forward a few years: After seven months of the nomad life, many miles and beautiful vistas, many journal pages and boxes of color slides, the pitching demon got the best of me. I did not write a single article or sell a single photo from a camping trip that took us through much of the northern and southwestern U.S. as well as eastern and western Canada. Not one.
When we landed in Hartford, Connecticut, I had the same job-hunting problem as before: no spouses, hired or competing. At least there were Fortune 500 companies in Hartford, not just military installations! Local gigs were within reach. But pitching remained the same – nerves, leading to angst, sometimes terror. More freelance business was done on the phone by then, and I talked my way into a few one-off publication gigs that added confidence-building pieces to my portfolio. I wrote and edited a community newspaper. I was a busy freelancer, but I did not pitch.
After getting stiffed on a big project, I got out of journalism for a few years. I was lured back in by an ad in Quill, the Society of Professional Journalists’ magazine – a gig stringing for BNA (now Bloomberg BNA), the D.C.-based publishing company that became my long-time employer. I conquered my demon quickly pitching to BNA editors, with the help of a network of correspondents throughout the U.S. who kept in touch and shared tips about working with different editors and covering legal and government news across the spectrum of BNA’s publications.
The BNA gig was my luckiest freelance find because it ended with full-time employment that went on for years. I retired early on full pension 10 years ago, with the clips, skills, contacts, and confidence to get back into freelance journalism. That’s when the pitching demon came back into my life.
The business of freelancing had changed by then. Email and the internet had given independent workers a new way of finding and applying for gigs. Cold calls were less frowned upon, and email follow-ups provided a softer landing for rejections.
I had some early successes finding anchor gigs through networking. The SPJ Freelancer Directory sent another anchor editor my way. I had plenty to do, and my business was profitable.
But anchor clients come and go, and from time to time I needed to diversify my client base. I learned to respond quickly when I found potential clients’ calls for proposals on the internet, tailoring my queries, pitches, and resume to the needs expressed in each notice. I found enough high-paying work that I was able to take in stride the many, many more unacknowledged emails I sent. Outright rejections were preferred to the ignominy of invisibility.
Over time I quit pitching, content with one editing client and all the free time I could hope for. In August I let that gig go, believing I was ready to retire. But this is not an easy business to walk away from if you’ve got the journalism bug!
Now I want to write news and in-depth features, returning to my early freelance writing pursuits. I have a new interest to pursue, and the need for pitching is a fact of life once again. So is my pitching demon.
Happily, it’s too soon to query any editors or pitch any stories. I have much research to do, many people to interview, sources to cultivate, data to collect and analyze – much to learn before the stories will reveal themselves. I have a plan: to gain the confidence of editors by providing news coverage in a specialized, under-reported area while I learn who the players are, thoroughly investigate the subject, and look for some solutions to write about.
Finding those solutions will also help me conquer those demons. I’m sure of it!

I won’t be surprised to see a complaint by the new President that reports of his administration removing LGBTQ, climate change, and other pages and content from the White House website constitutes “fake news.” It wasn’t fake – it was just wrong, at least as reported on People.com.

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Another article, on the Advocate website, didn’t report the erroneous allegation that the Trump administration or transition team took the pages and references down.

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It just didn’t report that, in the normal scheme of things, the orderly transfer of power to the new administration includes archiving the White House website under the departing president and, simultaneously, launching a new version produced by the incoming head of state.

Obama’s archived website:

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Trump’s transition website:

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The Advocate article reported on alarm in the LGBTQ community over disappearance of pages on whitehouse.gov reporting on gay rights, as well as other subjects that were Obama administration priorities, including climate change and civil rights. It may have been accurate as reported, but it wasn’t complete.

The Advocate’s failure to include a nut graph on the way things generally work when one president departs and another one is sworn in leaves the story without context – and misses an opportunity to give readers a more accurate picture of what happened. The transition version of whitehouse.gov launched at noon on Inauguration Day had no pages other than the splash inviting people to sign up for email updates. Reporting that fact would have been a good story on its own, but it would have taken away the hook for the story the Advocate ended up telling.

It’s no surprise that gay rights, climate change, or civil rights (among other topics) aren’t a priority for the Trump administration – any expectation that these issues would continue to have prominence on the White House website after Obama left was misguided. But telling the story and not giving context needed to paint an accurate picture adds fuel to an already hot fire around “the media” and how we cover the new administration.

We need to be more careful. We need to do better work.

Just sayin’ …

Unfortunately we are in the market for a new car after only three years. This from the people who have generally driven our cars into the ground – for 10 to 14 years – and then donated them to charity because they weren’t worth selling.
In case you didn’t know or guess, our current car is a Volkswagen Jetta TDI – one of those diesel numbers that are spewing noxious fumes into the air. Good mileage and low emissions per mile were among the criteria we set when we bought it. Those are still among our top criteria, along with handling and comfort for our long drives north and south. Six to eight hours in a ride that doesn’t perform well, isn’t comfortable, has to be fueled too often, and/or costs a bundle to operate is not what we are looking for.
We bought the Jetta to replace one of our two Subaru Outbacks, so we started looking at small cross-overs – particularly the Mazda CX3, Honda CRV, and Outback. I don’t remember what objections we had to which car, but generally we found them uncomfortable, weren’t happy with the way they handled (steering, acceleration, braking), and felt as though they were just too big.
By 2014 the Outback had increased considerably in size from our previous models – a 1997 and a 2000, which felt more like station wagons to me. Perhaps Subaru increased the size because of competition from other companies introducing crossovers, which weren’t so popular when we previously shopped for cars. Whatever the reason, we weren’t any happier with it than with the others we drove. And by then we were particularly disenthralled with the gas mileage of our older models, so buying an Outback wasn’t high on our list.
But there weren’t many station wagons three years ago – and honestly, I don’t remember driving any other than the Jetta. We loved it from the first ride. It felt right. We hadn’t been looking for heated seats and really preferred all-wheel drive, so we had to recalculate our attitudes to make it work. The more stable price of diesel fuel and high city and highway mileage were bonuses that more than made up for what we perceived to be the drawbacks.
Shopping for cars in 2016
Most of our considerations as we approach a new car purchase this fall, after Volkswagen forks over a sum estimated to be more than we paid for the car three years ago, are the same as before.
The difference this time around is that we are beginning our search with a station wagon. Not a “small SUV” or crossover. Not a four-seat hatchback, and not a two-door car with a big seat/cargo area behind the driver and front passenger. We need to be able to fit four full-size people, sometimes a half-size person, and one or two mid-size dogs inside. We need to be able to drive to New England or Asheville in relative comfort, allowing for the discomfort of traveling six to eight hours at a stretch with only brief stops. We need to get reasonable mileage, and above all it must not pollute.
The only obvious replacement, unfortunately, is made by the same company that lied to us about our last car. We will no doubt drive a Volkswagen Golf SportWagen because it may rival our Jetta in mileage, and if it’s as comfortable and easy to drive, it might work. But no heated seats (unless that’s changed on the 2017), and we question paying the money Volkswagen is required to give us right back to them.
There are a few other choices – a Volvo, a BMW, an Audi, a Mercedes. Not one of them gets decent gas mileage, and most of them are for sure out of our price range. So, is it worth even taking time to figure out if any of them are comfortable and easy to drive?
My real question is, why can’t we just buy a reasonable station wagon? Why is there no mid-price competition in this kind of car? Does everyone now have so much gear that they need an SUV, or at least a crossover? Why did the auto manufacturers give up on the staple of family cars, a wagon to haul three kids and a dog across the country in the summer?
This post is just a rant. I don’t expect anyone to have anything else to suggest. If you do, I’d be more than happy to hear about it, though.
[sigh]

When I closed down the website I used previously for business purposes, I intended to create a new presence for my business here at hazelbecker.com. I had agreed to work again after a two-year hiatus, thinking I would take on a small publication development project for Bloomberg BNA and then decide how to spend my professional time – the hours each day when I don’t pretend to be retired.
You can see how well that worked! I continued with the BBNA publication until last month.  I’ve enjoyed being back in the hard-news game the BBNA way, particularly helping figure out the best way to cover an esoteric subject succinctly and with very quick turn-around. The gig also included a lot of editing and training, other parts of my BBNA career that I found most rewarding.
During the same period I was working as a volunteer developing a new website to pull together communications for a nonprofit I belong to. It took too much of my time and dragged on forever, but now I see that activity also winding down – website launched, other volunteers beginning to step in and take over content development and maintenance on the site. Whew!
That brings me back to where I thought I would be by late 2014 – creating a new presence for Hazel Becker, Editing & Publishing LLC, my freelance writing, editing, and publication consulting business. I want neither to jump back in with both feet nor to disappear completely from the journalism scene, so I’ll need some income to pay my expenses and keep up with my profession. Clearly, this blog isn’t going to do the trick.
At the Society of Professional Journalists D.C. Professional Chapter’s freelance luncheon earlier this week I enjoyed helping a new freelancer begin to think about how she wants to market herself. She’s unemployed after moving to the D.C. area and would like to try her hand at freelancing rather than take a salaried position that isn’t really what she wants to do. She wasn’t sure how to get started, so we spent some time talking about how she will create a presence for her budding freelance business on the web.
Since I shut down my previous business website two years ago and haven’t cared about visibility until now, I feel lucky to have opportunity to start over. A little overwhelmed, yes – but also perhaps a little wiser, and certainly more familiar with website publishing and freelancers’ websites. I hope it will be better this time.
So, I’m looking at the new web presence for my old freelance business with a fresh eye, hoping I’m up to the challenge of blending business with personal on the internet. I hope you’ll see some results here this summer. 

Robert had scans at Sibley yesterday and got the results today – no evidence of disease! Notably for me, I had no scanxiety this time. I guess we’ve both come a long way since his melanoma diagnosis in May 2012.

Although I haven’t written about scan anxiety in a couple of years, that doesn’t mean it hasn’t been nagging at me somewhere in the background – until this time. But even with the length of time between scans getting longer, I didn’t lose any sleep this time and hardly seemed to notice. Instead, I caught myself wondering whether he really needed me to go to the hospital with him. It wasn’t any measure of anxiety that made me keep quiet and just go – instead, it was the feeling he deserved some payback for all the times he’s tended to me when I bled too much or precautions needed to be taken so I wouldn’t. And I was pleasantly surprised by the speed with which Robert sent me the results; I hadn’t even thought of looking online for them yet.

I’m not saying that I don’t think about melanoma any more. It’s still a nasty disease. Unless the experimental melanoma vaccine Robert had administered in 2012 is more of a wonder drug than the doctors have evidence for, his chance of metastasis isn’t reduced just because his disease hasn’t become active. Those little buggers could still be floating around in there, waiting for their chance.

Perhaps Robert’s demeanor has rubbed off on me, even if just a little. I’m better able now than I was in the past to keep possibilities in their place and not treat them like eventualities, planning in my mind now to deal with them. His ability to focus on what he needs to be doing and not be distracted by worries about things beyond his control is admirable. He controls what he can – forgoing beach vacations despite his love of the seashore, making sure he’s in the shade on the patio when we relax there at the end of the day, wearing his Blue Devils hat even when going into a crowd of Tar Heels or Terrapins fans to make sure his head is covered. He just hasn’t got time or patience for worrying.

I don’t worry a lot either – but that hasn’t always kept me from preparing contingencies in the back of my mind for things that trouble me. About melanoma, however, I feel as though I have built a protective shield inside me that will kick in and keep me from going crazy if the news isn’t as good after some future scans. I’m sure the progress in melanoma research has something to do with strengthening that shield. I’d like to think I’ve built some inner strength as well.

Let’s hope we don’t have to find out anytime soon.

Even if 3 ½ years is not a milestone generally marked in cancer survival, we came away from our visit with Dr. Evan Lipson at Johns Hopkins University Hospital yesterday with smiles and relief on two fronts. Not only does Robert continue to show no evidence of disease after his primary melanoma was removed in June 2012, but the report we heard on progress in melanoma research since his diagnosis is exciting and encouraging.
First, a brief recap (or feel free to skip to the first subhead below): Robert’s rather large, probably nodular melanoma lesion was discovered in April 2012 when his dermatologist removed what we thought was a cyst from his scalp. Because it didn’t show up on the skin looking like melanoma, the biopsy report said he had metastatic melanoma – at that time a condition with very poor prognosis (and still not what you want to hear today).
After surgery to remove the lesion from his scalp and a skin graft, consultations with melanoma experts at Hopkins and the University of Pennsylvania plus a report from scientists at Stanford University led us to the conclusion that Robert’s lesion was either primary dermal melanoma or nodular melanoma.
In either of those cases, the advice from all the melanoma specialists we consulted was the same: be vigilant in following up with the dermatologist and oncologist and, if you choose to, enroll in a clinical trial looking into melanoma vaccines designed to boost the immune system’s response to any melanoma cells floating around in the body undetected. So, that’s what we did.
(Click here if you want to read our melanoma story from the beginning.)
N.E.D. – all clear for now
In addition to the GVAX trial, Robert enrolled in a five-year follow-up study, and yesterday’s visit with Dr. Lipson in Baltimore was the annual check-up that’s part of that study. He had the scans here in D.C. at Sibley Hospital (where we see Dr. Lipson for the periodic check-ups recommended during the first five years after a melanoma lesion is resected), so we already knew the radiologists found no evidence of metastatic disease (N.E.D.). This visit included the blood work that confirmed everything else was ok.
Dr. Lipson stretched the time for follow-up scans to six months; we will see him next at Sibley in June. This is not unexpected for a patient who is 3+ years N.E.D., and I know if he suspected anything was amiss we would be scheduled to see him sooner. N.E.D. scan results are reassuring whenever we get them, and I am more at ease now than I was a year ago with a half-year interval between scans. All is well.
Update on melanoma research and treatment
On the way to Baltimore Robert read the paper that was published on the vaccine trial he participated in, but as it was written in med-speak he couldn’t understand it. So, after razzing Dr. Lipson (a former CNN producer) about forgetting how to write properly, we asked for a summary.
Dr. Lipson said the GVAX trial that Robert participated in produced mixed results. On the one hand, in looking at the tissues taken from study participants after the vaccinations, researchers saw increases in the types of cells that they hope would augment immune activity and decreases in the kinds of T cells that would hold back or block immune attacks. However, they didn’t find increases in cells that would indicate active anti-melanoma immune responses. This may be because the study cohort consisted of patients with resected melanoma – in other words, mostly patients who didn’t have active disease.
The next step for the research is probably a study that combines the GVAX vaccine with another agent to boost melanoma immunity. Possibilities are an anti-PD1 agent, like the one reportedly used to treat former President Jimmy Carter’s brain metastases, or T-VEC, a version of the herpes simplex virus that showed promise in studies released in the summer. We hope not to be part of the next trial … we don’t want to have to decide what the next treatment will be – but we’re glad the research continues at such a fast pace. Just in case.
As for the genetic testing that was done on tissue from Robert’s melanoma tumor, we found out – not surprisingly – that the tissue sample was insufficient to identify any of the genes that are known to be mutated in some melanoma patients. It might be possible to try again if there is enough tissue left from the tumor, but that may not be necessary – even if Robert has a recurrence. Scientific advances over the last few years make it possible now to find some gene mutations floating around in the blood stream, so they may be identified through a blood test. If there’s a need to do genetic testing on Robert’s melanoma (i.e., if it recurs), that would be the first thing to try.
But more important, advances in immunotherapy over the last few years have pushed therapies targeting specific genes to the back burner in melanoma treatment. The up-front therapies, like the anti-PD1 drugs approved in 2014 and the viral agents reported on this year, are at the forefront of melanoma research and treatment today.
N.E.D. – not necessarily “cancer-free”
Before signing off, I want to say a word about the publicity surrounding President Carter’s melanoma. Reports over the summer that metastatic melanoma was found in his liver and, later, had metastasized to the brain were upsetting, not only because I hope he will live longer and keep doing good work. I also was upset by the misinformation in the news reports.
Forgive me, journalist friends and colleagues, but there is a difference between “brain cancer” and “melanoma metastases in the brain.” This is not just splitting hairs – it’s important to people who need to keep up on melanoma research and treatment. Our continuous news cycle may not give journalists the luxury of reporting the details if they are murky or unclear, but neither does it insist that we report conflicting or questionable details immediately, even if someone else put them forward.
And as for Carter’s statement that he was “cancer-free” … I hope so, but I’m not sure enough to make that statement. Someone who presents with metastatic melanoma in two separate parts of the body may show no evidence of disease, but that doesn’t mean there are no micro-metastases floating around in his body.
I truly hope the treatment Carter took – one of the anti-PD1 therapies approved in 2014 – has knocked out any remaining melanoma in his system. And, I hope even more that we never find out that Robert is not “cancer-free.” But I’m not saying it. N.E.D. is good enough for me.