Monday, June 25, 2012

June 25, 2012 – Tweaking the Cocktail

If ever there were a good time to be a lymphoma patient (not that I think there ever is), it’s now.  Every annual meeting of ASCO (the American Society of Clinical Oncologists) seems to offer news of some new variation on treatment protocols that promises a heightened survival rate.

The latest one for follicular lymphoma – as I learn today from an e-mail bulletin sent around by the Leukemia and Lymphoma Society – is a new combination of Rituxan (the monoclonal antibody drug I received along with my CHOP chemotherapy) and an old drug that’s been around for a while, Revlimid:

John Leonard, M.D., of Weill Medical College of Cornell University presented promising results for a Phase III trial of a new Rituxan combination to treat patients with follicular lymphoma (FL). Dr. Leonard reported that using Revlimid plus Rituxan very much increased overall response rates for relapsed FL patients (73% in this trial vs. 50% for Rituxan only in previous trials). A Phase II trial of this combination for newly diagnosed FL patients is already underway.”

Revlimid, its manufacturers admit on their website, is an “analogue” of Thalidomide – one of the scariest names out there in the field of pharmacology. OK, let’s be real: Revlimid is Thalidomide, but with the drug’s notorious history I can understand why they’d rename it.  I still remember, as a kid, paging through an issue of LIFE magazine with its chilling, black-and-white photos of the children born with horrible birth defects as a result of that drug.  From 1957 to 1961, Thalidomide was commonly given to expectant mothers to prevent morning sickness.  No one knew that many of the children born to these unfortunate mothers would have no arms – other than small, vestigial appendages that could in no way substitute for the real thing. Very sad.  (Not to mention, a gold mine for the trial lawyers.)

As a cancer drug, Revlimid is evidently effective: and, as long as the patient isn’t an expectant mother, it’s supposed to be safe (or, at least, as safe as most other cancer drugs, all of which have a certain risk to them).  Lots of chemo drugs come with a warning label saying they’re not for expectant mothers, or may cause sterility.  Doctors have raised that sort of warning with me, at various times as I prepared for treatment, but when I tell them Claire and I are not only done having children, but that I’ve had a vasectomy, it lays those concerns to rest pretty quickly.

It’s not cheap, though: reports that Revlimid (medical name, Lenalidomide) costs an average of $163,381 per year.  Ouch.

Dr. Leonard’s work is only a Phase I trial, with Phase II now underway, so this drug cocktail is a long way from being ready for prime time.  I’m glad to know someone’s out there, though, with the medical-research equivalent of a cocktail shaker, trying out new drug combinations.  From early indications, chances are that this one may be in production in several years’ time, so it's one more reason to be hopeful, should the day come when I need treatment again.

Saturday, June 23, 2012

June 20, 2012 – Looking for Burglars in an Empty House

Today I drive to Memorial Sloan-Kettering’s satellite facility in Basking Ridge for a follow-up visit with Dr. Boyle, my thyroid surgeon.

The worst part of the trip, it turns out, is the drive up there.  I-287, a ring-road around New York City, is one of the most congested highways in the country.  Today, it’s a parking lot.  Given the time of day, there has to have been an accident or breakdown or something, but I don’t stick around to find out. Already running late, I bail out at the nearest exit (once I creep up to it), and use my GPS to chart out an alternate route on back roads.

I’m an hour late when I get to the place, but they manage to adapt.  First is a thyroid ultrasound – one of the easiest medical tests ever, from the patient’s standpoint.  Lie down on your back on a gurney, in a darkened room, while the technician squirts pre-warmed goo on your neck (that’s a technical medical term, I believe) then slides a sensing device all over your neck for five minutes or so.

It occurs to me, as I’m lying there looking up at the ceiling, that this follow-up test is something like looking for burglars in an empty house.  I no longer have a thyroid gland, and Dr. Boyle was confident, following the surgery, that he’d removed the entire thing, leaving no thyroid tissue behind.  I had the radioactive iodine treatment last fall, just in case.  Today’s visit is likewise one of those “just in case” situations.

The visit with the doctor himself is brief and uneventful. After ascertaining that I’m having no difficulties, and that I’m continuing to see his colleague Dr. Fish, the endocrinologist, to make sure I’m taking the most appropriate daily dose of Synthroid (the replacement thyroid hormone), he tells me I’m doing fine and that he’d like to see me in a year.

That’s encouraging.  I wonder about the necessity of today’s test and consultation, but I suppose it fits into some kind of standard follow-up protocol.

I didn’t think we’d turn up any burglars.  What would they be looking to steal, anyway, after the scorched-earth policy of my thyroidectomy?

Tuesday, June 12, 2012

June 12, 2012 – Huh?

Every once in a while you run across a news story, and the only possible reaction to it is.... “Huh?”

That’s how I responded when I read a news article just out, that claims there’s conclusive evidence that overweight men have a better chance of surviving diffuse large B-cell lymphoma than those of more normal weight.

Like I said: Huh?

That news runs counter to every bit of medical advice I’ve been hearing for most of my life.

The article is of particular interest to me because (1) I’m a man, (2) I’m considerably overweight, and was so at the time of my lymphoma diagnosis, and (3) I have something very similar to diffuse large B-cell lymphoma.

OK, my grading was actually “B-cell, diffuse mixed large and small cell.”  That means I had some less-dangerous small cells – the kind present in indolent, “follicular” lymphoma – mixed in with the large ones.  It was the presence of the aggressive larger cells, as discovered by the second-opinion pathologists at Memorial Sloan-Kettering as they reviewed my biopsy slides, that put me on the chemotherapy bandwagon straightaway (do not pass GO, do not collect $200).  Otherwise, watchful waiting would have been a viable option.

The only time in my life when I’ve been of statistically normal weight was a period of time in my very late teens and early-to-mid-20s.  Both before and after that time, I’ve struggled constantly with my weight.  My failure to turn around my tendency towards obesity has been one of the greatest sources of guilt and shame in my life.

Ever since cancer has come onto the scene, it’s been even worse.  It’s hard to marshal the emotional energy to change my eating patterns when I’ve been through the sort of struggle I have.  There’s a part of me that says to the rest of me: “Why should you suffer through a diet when you’ve already suffered through so much else?  Live a little!”

Then this article comes along, suggesting that the spare tire I’ve been carrying could very possibly have been my life-preserver.  Go figure.

The article’s appropriately cautious about the study’s results.  The researchers don’t want anyone to go out and start lobbying for hot-fudge sundaes to be included in the treatment protocols.  Quite sensibly, it makes the point that obesity is a proven risk factor for all manner of very bad things that could happen to a person, medically, and that there’s every reason to lose those extra pounds.

But still, it makes you think.

And this one I’ll be thinking about for a very long time.

Monday, June 11, 2012

June 11, 2012 – Robin Roberts, Survivor

A remarkable television moment this morning, as ABC Good Morning America broadcaster Robin Roberts delivers an emotional announcement that she has myelodysplastic syndrome (MDS), and is starting treatment that will ultimately result in a bone-marrow transplant.

This isn’t the first time Robin has been in the news with a very personal medical story.  Five years ago, she received successful treatment for breast cancer, and spoke about it on the air. Today, she sat on a couch with other members of the Good Morning America team gathered around her for support, and told her viewing public of her diagnosis.  A helpful stagehand had attached a box of Kleenex to the couch with velcro.  She didn't need it.

It’s really worth watching the video clip of Robin’s Good Morning America announcement.  It’s a fascinating mini-case-study of what it means to live with cancer, in community with others. The reactions of her colleagues sitting on either side of her are just as illuminating to watch as she herself is.

Although Robin didn’t use the “C” word on the air, MDS is considered to be a blood cancer in the same family as leukemia and lymphoma.  Treatments are similar.  Robin has the good fortune to have a sister who’s a perfect donor match (which tells me she’s going to have an allogeneic stem cell transplant, generally considered to be the most effective).  Good for her.

At such future time as I may have to have a stem cell transplant, a donor’s not going to be so easy to find.  Both my brothers have been tested, and we’ve learned that neither one of them fits into the 25% of siblings who are typically a good match, so I’d have to rely on finding a volunteer through the National Bone Marrow Donor Registry.

Robin is planning to continue working, even though a PIC line may be visible on her arm (not a big deal for most people, but in the image-conscious world of TV journalism, it’s significant). She will, of course, eventually be out on sick leave for an extended period of time, as she goes into isolation for the actual transplant.  Yet, in the months leading up to that time, as she receives various drugs to prepare her for the big event, she’s going to keep going before the cameras, living life as usual.

While this may sound extraordinarily courageous to some viewers – and, indeed, to some of Robin’s colleagues sharing the couch with her – to anyone who’s been in that situation it’s not so surprising. What most of us want to do, once we’ve gotten over the initial shock of our diagnosis, is to keep on living our lives.  This is the second time around for Robin, when it comes to cancer treatment. While she’s obviously emotional going before the cameras to tell her story, it makes sense to me that she wants to keep on keeping on, with a minimum of fuss.  In Robin’s own words, “It’s about focusing on the fight, and not the fright.”

If her viewers catch sight of a bandage on her arm, indicating the presence of her PIC line, then it will be a helpful reminder that there are far more people living with cancer than dying from it.

Tuesday, June 05, 2012

June 4, 2012 – The High Cost of Dying

An article in the June 4 & 11 issue of Newsweek lays it on the line, as far as the high cost of medical treatment in this country is concerned.  Case in point: Terence Foley, who died in December of 2007 after years of treatment for a rare kidney cancer. His wife, Amanda Bennett, tells their story in an article excerpted from her new book, The Cost of Hope: A Memoir (Random House, 2012).

Simply as an exercise in accounting, the figures for Amanda’s husband’s final month or so of treatment are jaw-dropping: $33,382 for one hospital stay, $43,711 for the next, and $14,022 for his final three days of life.

Amanda doesn’t begrudge the more than 90 grand her family and their medical insurer laid out in order to buy her husband a few more weeks, even though his quality of life was poor. She says she would have given approval for even more spending, had someone convinced her it would bring any real hope of achieving a remission or cure.

But that’s the root of the problem.  The higher you climb up the pyramid of the medical-treatment establishment and into the rarefied air of physician egos - not to mention the threat of legal liability - the more reluctant many specialists are to admit that any of their patients are likely to die on their watch.  They find it easier to simply order another MRI and hope it reveals something different than the last one did.

In a related video on the Newsweek/Daily Beast website, Amanda passes on a bit of practical wisdom one of her husband’s doctors shared with her, in a rare moment of candor: “We’ve got a terrific medical establishment. We do great things.  But we’ve never made anybody immortal.”

Several years after Terence’s death, Amanda gathered up her late husband’s medical records as she began researching her book.  As she commenced reading, she became aware of something no one had noticed at the time.  Everyone on Terence’s medical team knew his chances of survival were slim, and getting slimmer.  Yet, no one had been perceptive – nay, courageous – enough to blow the whistle and say, “Wait a minute, I think some of this may be getting excessive.”

In Amanda’s words: “I didn’t realize that they had prodded and X-rayed and scanned and tested him even though they thought he was dying.  Soon.  The discharge record after his four-day stay expresses regret that they could offer no more than ‘comfort care.’”

But still, during those days the tests and procedures just kept coming.

It’s true, we’ve got an amazing medical system in this country – especially in teaching hospitals like the University of Pennsylvania Medical Center, where Terence received his care.  I feel the same way about Memorial Sloan-Kettering, and even – for more routine needs – about our excellent community hospital, Ocean Medical Center. The problem is, in whatever hospital, once a crowd of specialists starts milling around a patient, each putting shoulder to the wheel of the aggressive-treatment juggernaut, it’s very difficult to stop it, nor even to slow its progress enough to assess whether every possible treatment is a good idea.

Amanda found that, in a major medical center like UPenn, it can be hard to simply keep track of all the people who are making medical decisions: “Over the stay, at least 29 professionals – nurses, physical therapists, a nutritionist, and nine M.D.s – attended to his needs.  We had never met any of them before, and I don’t recall meeting the majority of them even then.”

Typically, the specialists deal with only one tiny segment of the patient’s medical issues, reserving judgment on other problems that belong to a colleague’s turf.  OK, maybe a cardiologist wants to order a CT scan to take another look at how the heart’s doing – but is that costly scan really better than less-expensive diagnostic methods, if the patient’s kidneys are about to shut down for good?  Amanda began to suspect she was “the only person seeing Terence as a whole person instead of just a single piece of his body that needed attention.”

Moreover, Amanda found that most doctors have only the sketchiest awareness of how much certain tests and procedures are going to cost.  Medical insurance in America has evolved into such byzantine complexity that another sort of specialist – an insurance expert – is required to run the numbers.  This rarely happens until after the treatment has been ordered and completed. The consequence?  It’s all but impossible for patients and their families to make intelligent decisions, in real time, based on what certain treatments are going to cost.  Heck, the doctors themselves don’t even know.

It’s no wonder they don’t, because every insurance company is allowed to function like a vacationer shopping for a weekend hotel deal on Priceline.  Each company’s got their own William Shatner “Negotiator” character, whose job is to intimidate doctors and hospitals into allowing the insurance company’s executives to name their own price.  The result?  In going over her late husband’s medical records, Amanda and her researcher found that “the same CT scan, in the same hospital, cost $776 or $2,586, depending on which insurance company was paying.”

Is this free enterprise?  Sounds more like piracy to me.  (Although, in fairness, maybe that’s too strong a term.  “Privateers” is more like it.  Students of naval history know the privateers functioned more or less like pirates, except for the fact that their captains carried government-issued Letters of Marque allowing them to “name their own price” for captured enemy shipping.  Arrrgh, mateys, haul down the Jolly Roger and raise the comely pennant o’ Blue Cross/Blue Shield!)

In the overcrowded insurance marketplace, our medical-billing machinery has achieved such a level of complexity that it’s become a major cost center in and of itself.  Amanda cites a figure of 31% for the average cost of paperwork, much of it related to billing.  That’s nearly one-third of every healthcare dollar.  Granted, some paperwork will always be necessary, but even so, a shockingly high portion of every health-care dollar is devoted to paying for the insurance companies’ overhead, just so we can fool ourselves into thinking we’re maintaining free enterprise in an open marketplace.

Does preserving competition in the world of medical insurance result in such massive savings that they offset this absurdly-inflated cost of paperwork?  Not a chance.  But few people ever think about that.  We’re paying to solve one problem, only to create another that’s costing us even more.

I know from personal experience (based on the years we lived in Britain) that a single-payer system like Britain’s National Health System doesn’t have that problem.  That’s because there’s no patient billing, no multiple mailings, no collections. The government gets the bill, not the patient.  Think of it: No patient billing. Just imagine how much that would save us in paperwork!

But, no, we couldn’t do that.  Not here in America.  That would be – cover your tender ears, now, children, because I’m about to utter an ugly word –  “socialism.”

(Of course, everyone in America who's older than their mid-sixties already benefits from a government-funded medical-insurance system – Medicare.  I suppose it must stop being socialism, though, once the recipient passes the golden age of Medicare eligibility.)

Amanda points out that, in the last Presidential election, Sarah Palin stirred up a tempest of outrage with her dire warnings about “death panels” – which were, in fact, merely Medicare’s proposal that the confusing, ever-shifting constellation of medical professionals treating seriously-ill patients sit down and talk with each other every once in a while.  Amanda has a very different take on it: “The scary phrase suggested a harsh group of executioners ready to pull the plug on Granny to save money. I began to think of it in a different way: wouldn’t it have been great, as death became inevitable, to have had some help figuring this all out?”

She ends her article by observing that the cumulative, seven-year bill for her husband’s care was a whopping $618,646.  While she admits she honestly doesn’t know – had they realized the true cost – how much of his treatment they would have declined, she does know this about the kind of person her husband was: “I believe he would have liked the chance to play a more active role in how we spent enough money to vaccinate 600,000 children in the developing world.”

Were I in his place, I think I would, too.