Cancer Pain

Cancer Pain

Whenever I meet a new cancer patient, especially one with incurable cancer, pain always comes up in the conversation – whether they have it or not.

It’s the most commonly reported symptom of cancer, and it’s also one of the most widely feared.  

Most patients with advanced stage cancer do, in fact, experience pain; 75-90% according to a 2007 cohort study conducted in the Netherlands and published in the Journal of Pain and Symptom ManagementAnd for much of the history of cancer medicine, most of these patients suffered terribly during their illness – and many died in agony – before the importance of relieving terminal cancer pain was widely accepted. It’s little wonder that the hospice movement began first among cancer caregivers who’d borne witness to one painful death too many and rose en masse to say “enough, no more.” 

Despite the strides made in the last half-century, there’s still a lingering belief out there that having cancer means unrelenting pain– but I’m happy to tell you that hasn’t been true for a long time. 

In honor of Cancer Pain Awareness Month, here are a few important facts about cancer pain (some of which might surprise you): 

  • Cancer pain can almost always be controlled. Data from the World Health Organization shows that following simple treatment guidelines and using widely-available medications controls cancer pain over 90% of the time. 
  • Though narcotics are usually required to control cancer pain, addiction rates are extremely low in cancer patients – probably no higher than 4% according to several studies. That’s 5-10 times lower than the addiction rates among patients with other types of chronic pain. 
  • Pain relief doesn’t require that patients be “drugged out”.  Pain medications can certainly cause sleepiness, for the majority of patients this is short-lived and can be counteracted by dose adjustment. 
  • Dying in pain is a thing of the past. With good hospice care, no one need suffer when dying. 
  • Using narcotics DON’T hasten death. The best evidence indicates that dying patients – even comatose ones – live longer when given narcotics to control pain.

Grief is for Sharing

Grief is for Sharing

Why do we have an urge to avoid people who’ve lost a loved one?

Well, mainly because we don’t know how to make them (or us) feel better so we wind up saying stupid, empty things – like Let me know if I can do anything. 

We blurt that out desperately, knowing we’re just talking to talk, as do the people we’re saying it to – why else do they never taken us up on the offer?  

Please don’t feel bad if you’ve done it, because we all have. I certainly have.  

We don’t say these things because we’re bad, insensitive, or dumb. We say them because at some level we understand that simple human contact and empathy is the most important thing we can give, but giving it requires us to sit peacefully in the presence of pain, and resisting that overpowering urge to fix it. Healthcare professionals especially struggle with the “don’t try to fix the unfixable” urge, and that’s why so many of us are bad at talking about end-of-life or dealing with grief. But it’s those behaviors that put distance between us and the ones we’re trying to comfort, just when closeness is exactly what’s needed most. 

There are few things I try to keep in mind in these situations, and maybe they’ll help you too: 

  • Ask sincere questions, and make space for the answers. “How are you doing?” is fine, but “What are you feeling?” and “What are your days like right now?” are good too. If your loved one wants to talk, listen. But sometimes your loved one won’t have much to say, and it’s important not to take this personally either. Sometimes the most comforting thing you can do is sit quietly with your grieving friend and share the silence.  
  • Let there be room for tears.  Tears can be cleansing, but we’re taught to be ashamed of and embarrassed by crying. Not only is it unnatural to suppress tears, it also dishonors the importance of pain and loss generally. Be that person who can make a safe place for tears, rather than hurriedly reaching for the tissues to hide them.  
  • Help with the daily chores without being asked. One of my favorite quotes is “human to human we help each other through good and bad.” For some people, these simple “acts of devotion” mean much more than words, touch, or gifts. So bring over a meal, cut the grass, or fold laundry. If there are children involved, offer to watch them or transport them to or from school. Grief and loss drain energy for chores, and pitching in can free up the time for the grieving person to rest. We are in this world together, why not help each other carry the load when it’s too heavy. 
  • Don’t forget.  Contrary to popular belief, grief isn’t finished after a certain period of time or “moving through the stages”. Grief comes and goes likes the tides, even years after the loss – especially around anniversaries, birthdays, or major holidays. Remember to still offer support even long after the acute loss. 
  • Embrace the pain like you’re embracing your loved one.  Getting out of this unaffected isn’t possible for anyone with a heart, and you’ve got one. Be prepared to feel sad, scared, confused, helpless – and maybe lots of other things too. 
  • Remember this isn’t about you. Don’t be that person who’s so overwhelmed that the bereaved person winds up having to comfort you.  You’re suffering along with your loved one, but remember whatever you’re feeling is only a fraction of what they’re feeling.

Pembrolizumab approved for a slew of cancers all at once

Pembrolizumab approved for a slew of cancers all at once

Pembrolizumab (a drug that inhibits PD-L1) recently received FDA approval for any type of cancer that’s failed to respond to first line therapy, as long as the tumor carries a specific molecular defect.

Let me repeat that – ANY TYPE OF CANCER.

Mind not blown yet? OK, OK – I should give you some background information about how FDA approval works.

It used to be that drug-makers could advertise and sell medicines even if there was no proof the drugs were effective. It wasn’t until 1978 that the FDA required that medicines actually did what they claimed to do. This was great news for cancer treatment, because it led to the removal of a great many ineffective and fraudulent medicines from pharmacy shelves. But it also caused drug approvals to become much more narrowly focused.

Think about it: if you’ve got a drug that shrinks the majority of breast cancers, almost half of lung cancers, and a third of bladder cancers, you’re going to submit the drug for approval for each separate disease  since you don’t want the poor-responding bladder cancer to jeopardizing drug’s approval for breast cancer patients. But the result is cancer drugs usually only get second-tier testing in one specific type of cancer (or cancer situation) at a time. And though the FDA’s approving more drugs in less time than ever before, I still find it hard to be patient sometimes, even though I understand how important a proper approval process is. No one wants to go back to the “buyer beware” days before 1978.

Back to the main topic at hand, though – the FDA approved pembrolizumab for any type of cancer with a specific defect in DNA mismatch-repair.  That means the drugs work so well in so many different types of cancer that the manufacturer was confident enough to test it in multiple different cancers.

Nothing like this has ever happened in my professional career.

 

(Up Next: What are PD-L1 inhibitors, and how do they work?)

How Can You Do THAT for a Living?

How Can You Do THAT for a Living?

One of the most impactful statements I’ve ever heard about cancer came from a young mother who had just received one of the most devastating possible diagnoses.

She said “I may not be able to change the endpoint but I can change the trajectory!”

I felt so many things at once after hearing her say that: compassion, admiration, courage, sadness, embarrassment over some my own trivial life priorities, gratitude, injustice and a sense of helplessness.  It also made me think back to one of the most common questions I get when people find I work in Oncology: “How and why do you do what you do?” But in thinking back on that patient and how her simple determination to find meaning affected me, I’ve realized the answer is “how could I not?

Scientific and technologic advances are providing new treatment and symptom management options across the cancer care continuum– but at Green Bay Oncology we also realize that cancer care is as much an art as a science. We recognize the central importance of the quality of a patient and family’s experience through diagnosis, treatment, and what comes after. It’s not enough to treat a person’s cancer. We must also help patients and families feel as well as possible during the process. To do that, we must first help them see and feel how much we care about them as individuals. We have an incredible multidisciplinary team at the Cancer Center working together to change the endpoint whenever possible, and to optimize the trajectory in every case – to help make a difference no matter how challenging, small, or short-lived.  This is the essence of why we do what we do…because it means something.

Cancer: Written in the Stars?

Cancer: Written in the Stars?

Among other things the summer equinox means

(besides the sunlight fracturing my sleep at 5:30 in the freaking morning), star-gazers know that the sun’s most northerly position on the day of the equinox is in Taurus – though it wasn’t always so. In ancient Greece, the sun would’ve ridden to its equinox peak in a different constellation: specifically, Cancer. When I stumbled on that tidbit in the paper yesterday, I was reminded how long that name’s been with us.

Cancer’s new prominence in the modern age – in incidence, and in awareness – often fools us into thinking it’s a new illness; but in fact, the disease is as old as our species. It was first named in the fifth century B.C.E. by Greek physicians in the Hippocratic tradition who, frustrated in their attempts to pry tumors free of their patients, called them karkinos (“the crab”) because of the tumors’ claw-like grip.

Greek knowledge formed the basis of much of Roman learning. As Hellenic power waned and Roman influence dominated the world, the Greek word for the disease was eventually replaced by the Latin synonym for crab: cancer.

There may even be another reason these tumors reminded Greek physicians of a crab, though I’ve no proof of this. In mythology, the goddess Hera tried to foil Hercules at every turn – and during his battle with the Hydra (when he needed all his wits and strength) she sent a large crab to bite at his feet during the battle, hoping it would affect his footing enough to cause his defeat. When Hercules instead crushed the crab, myth says Hera memorialized it in the heavens as one of the signs of the Zodiac.

In Hippocrates’ time lifespans were much shorter so cancer would’ve been rare, and would’ve affected the young and otherwise healthy. It would’ve seemed a random calamity of cosmically cruel proportions, biting at the heels of otherwise vibrant youth – like the one Hera sent to torment Hercules – and just like pediatric cancer still seems to us today.

U.S. Oncologists are Working Shorthanded

U.S. Oncologists are Working Shorthanded

The relationship between cancer patients and their oncologists is an intense one.

The stakes are high for everyone involved, and cancer patients especially have very high expectations of their doctors (more info here). There are approximately 15 million cancer survivors in the U.S. right now, and as our population ages and cancer treatments become more and more effective, the number of cancer survivors needing precious time with their oncologist keeps increasing. That number is expected to reach 20 million by 2026.

But the demand for cancer doctors is outrunning supply: in 2016, there were 12,100 practicing oncologists in the U.S., approximately one-fifth of whom are due to retire within the next five years. At present, graduate programs can only supply about 600 new oncologists per year – and with increasing financial pressures on educational programs, there’s almost no potential to increase that output within the next decade (more info here).

And it isn’t simply a matter of current oncologists stepping it up, either: the average oncologist is already working 63 hours per week.

It was hoped that widespread implementation of computerized medical records would yield a boon of efficiency, but unfortunately that hasn’t materialized either. It’s currently estimated that oncologists now spend 50% or more of their time on computer work, leaving less (rather than more) time for patients. Maybe physicians haven’t yet climbed the steep computer learning curve to gain new efficiencies, or maybe current technologies (as implemented) aren’t designed to make physician work easier, but either way it’s been more burden than benefit so far.

So if the work’s hard, getting harder, and there’s more of it than ever before, who in their right mind would go into medical oncology in the first place?

Good question; I’ll try to answer it in my next blog.

For more information about the author of this blog: click here

 

GBM Treatment: One Small Step at a Time

GBM Treatment: One Small Step at a Time

Brain Cancer.

The term strikes fear in even the strongest of us and for good reason. In the past 5-10 years, treatment’s progressed by leaps and bounds in a great many cancers, while in others progress lags. Unfortunately  glioblastoma (GBM), the most common of adult brain cancers, is one of the latter. GBM remains an aggressive disease with a median survival of just over a year in the strongest of patients (and only half that in the more infirm).

In 2005, we took a baby step forward with glioblastoma. The EORTC / NCIC trial showed the addition of temozolomide to standard surgery and radiotherapy extended median survival from 12.1 months to 14.6 months, and improved patients’ chances of being alive at 2 years from 10.4% to 26.5%2.  While not a home run, it was good enough to become the standard of care for the next decade.  But there progress stalled, and would probably still be stalled if it hadn’t been for some unconventional thinking.

The conventional approach to cancer treatment is to eradicate every single cancer cell, achieving cure. But because GBM cells are extremely hard to kill, all of these approaches ultimately failed.

All right then, so we can’t kill it – but what if we could hold it to a stalemate?

Enter Tumor Treating Fields (TTF): a little bit science fiction, a little bit science fact. I have to admit I was very skeptical when I first heard of the technology, and was even less enthused when I saw what a nuisance it is for patients – but it works. In 2015, investigator Roger Stupp (who developed temozolomide treatment in the first place) showed that adding TTF to standard treatment improved median overall survival from 16.6 to 19.6 months, and improved a patients’ chances of surviving 2 years from 29% to 43%3 – that’s as big a step forward as adding temozolomide was in 2005.

What’s the magic? TTF subjects tumor cells to rapidly alternating electrical fields, disrupting cell division. And since it’s uncontrolled cell division that makes a cell cancerous in the first place, the TTF approach hits the cancer right where it hurts.

TTF doesn’t cause nausea, or fatigue, or infections, or low blood counts. It doesn’t even require patients come into the office for treatment– but there is a down side. Patients have to wear an electrode array affixed attached to their bare scalps (meaning they have to shave their heads), and powered by a backpack-sized battery pack. – and they have to wear it for 18 hours a day. Apart from the obvious inconvenience, the worst side effect most patients experience is some mild scalp irritation.

In America we like to imagine beating cancer all at once, a sudden stunning breakthrough that solves the problem once and for all. We’re a culture that prefers football to soccer – touchdowns, home runs, and blowout victories to gradual wins of 2-1 – but in reality cancer treatments have almost always improved gradually, one small step at a time. I’m not sure we will ever see a home run in GBM…but I do believe that slow and steady will eventually win the game.

  1. Stupp R, Mason W, van den Bent MJ, et al. Radiotherapy plus concomitant and adjuvant temozolomide for glioblastoma. NEJM, 2005 Mar 10; 352(10): 987-96.
  2. Stupp R, Hegi ME, Mason WP, et al. Effects of radiotherapy with concomitant and adjuvant temozolomide versus radiotherapy alone on survival in glioblastoma in a randomized phase III study: 5-year analysis of the EORTC-NCIC trial. Lancet Oncol. 2009 May; 10(5): 450-66.
  3. Stupp R, Taillibert S, Kanner AA, et al. Maintenance therapy With Tumor-Treating Fields Plus Temozolomide vs Temozolomide Alone for Glioblastoma: A Randomized Clinical Trial. JAMA. 2015 Dec 15; 314(23): 2535-43.

Melanoma Deserves Your Attention

Melanoma Deserves Your Attention

Our skin is the body’s largest organ, so maybe it’s no coincidence that skin cancer is the most common type of cancer.

Though there are exceptions, they usually form on skin that had heavy sun exposure – so unlike most cancers that hide inside the body, we can actually see these cancers with our naked eyes.

Most types of skin cancer aren’t terribly dangerous, but malignant melanoma’s the exception. Though it’s the least common type of skin cancer, it’s by far the most aggressive. Melanoma’s easy to cure – but only if we can catch it before it starts to spread. It can invade nearby tissues and spread to other body sites much earlier in its lifespan than most other cancers – while it’s still just millimeters in size. That’s what makes it so dangerous, and why early detection is so crucial.

Recognizing melanoma’s signature features are the key to early diagnosis, treatment and cure.

Just remember “ABCDE”:

Asymmetry: One part of a mole or birthmark doesn’t match the other.

Border: The edges are irregular, ragged, notched, or blurred.

Color: the color is not the same all over and may include shades of brown or black, sometimes with patches of pink, red, white or blue.

Diameter: The spot is larger than ¼ inch across – about the size of a pencil eraser.

Evolving: The mole is changing in size, shape, or color over a few weeks or months.

If you’re in doubt about a spot on your own skin, please don’t hesitate and see your primary care provider. It might save your life.

FLT3 mutations in AML: From Trivia to Triumph

FLT3 mutations in AML: From Trivia to Triumph

Here’s an aggravating fact about medical education – a large chunk of what’s taught in medical school is useless trivia:

  • The muscle that elevates your palate is called the tensor veli palatini…
  • Here’s the best way to treat leprosy…
  • Adults whose acute leukemia cells carry an internal tandem mutation of the FLT3 surface tyrosine kinase have a worse prognosis…

I and other cancer specialists have known that last little nugget for about ten years, but haven’t been able to do squat with it:

“So should I use a different induction chemotherapy for FLT3-mutants?” (No)

“Should all FLT3 mutants get a stem cell transplant?” (Not necessarily)

“Is there anything I can do differently for these patients?” (Silence)

Thanks. Thanks a fricken’ lot.

It’s a little unfair to rant, I know. There’s a long lag time between discovery and new treatments for cancer -but the wait is hard, especially with new leukemia patients coming in the door every month.

But last week finally – finally – a drug targeting this specific molecular defect was approved by the FDA.

See, FLT3 is like an “on” switch for cell division. It’s supposed to only be on when it gets a particular environmental signal, and not every cell even carries the switch. But about 35% of acute myeloid leukemia patients have FLT3 abnormally expressed in their cancers – and the switch is stuck in the “on” position, driving cancer cell growth.

Happily, the new FLT3-inhibiting drug midostaurin (given as a twice-daily pill) markedly improved response and survival rates in AML when added to the standard chemotherapy cocktail. The benefits seemed most pronounced among people who ultimately went on to receive a stem cell transplant – but a higher percentage of patients were able to achieve the remission usually required as a first step before transplant.

So now I can re-categorize the FLT3 information from “trivia” to “critical information” in my brain, as I impatiently wait for more breakthroughs.

FDA Press Release 4/28/17: click here

My Hero

My Hero

Oprah’s guest pointed to the place above her collarbone where the tumors first appeared. It’d been a hard fight, with one particularly close call, but she’d made it and now she was a survivor – even a hero. Cue tears from the audience.

Normally I’d have been moved, crying along with the show and applauding the brave woman on Oprah’s couch. I loved stories about women who faced their fears and came out stronger. I wanted to be one of those women.

But the thing was, I had a lump, too. It was in almost the exact same spot as hers. It’d been there for a few weeks now. They’d told me in the clinic that lymph nodes come and go all the time, that I shouldn’t worry if it went away in a week or so, but that I needed to call them back if it didn’t.

But it hadn’t gone away. The thing was getting bigger – a lot bigger. And now there was a new one starting on the other side of my neck. And I wasn’t up to facing it. I was twenty-three years old, about to start a new job as a real estate agent, and the brave woman on Oprah’s couch was mocking me.

I wasn’t feeling any braver when I drug myself back to the clinic. And brave wasn’t on the menu when I had the biopsy, either.  And when I finally heard someone say aloud what I already knew – “cancer” – brave had skipped town.

When you’re in a situation that threatens your future, you can’t know at the time that everything’s going to work out all right. All you know is fear. You’re afraid of the lymphoma, you’re afraid of the chemotherapy that’s supposed to save you, and you’re afraid every next test will tell you something you don’t want to hear.

They must’ve smelled it on me because it seemed that every nurse, every receptionist, practically every person I saw at GBO put in something extra to help me feel less afraid. And they were calm. They’d been there and done that, and their calm reassured me.  I will never forget those wonderful people. They’ll always be a special part of my life.

But there’s just something about Dr. Jaslowski.

Ever met him? He’s soft-spoken and a little shy. He’s so casual that you can almost forget how much information he’s got in his head, and how brilliantly he can use it. He’s gentle and reserved. But then when you most need and least expect it, he wraps you in this huge kindness and you realize he’s the best person on earth.

There was this one day late in my course, and I’m in clinic for treatment. It was almost routine by then, but for some reason fear had gotten out of the barn and was galloping off with me. My chest was tight, and my mind couldn’t fix on anything to ground me. It felt like trying to catch hold of a branch while falling from a very tall tree. I was a mess.

I’m sure Dr. J had a million other things to do right then. I know it would’ve passed eventually and I’d have been fine eventually. But he came to me in that dark place, and helped walk me out of it. I can’t even recall everything he did or said. I just remember feeling unhinged before he came, and somehow afterwards I could remember where I’d started from and how far and how well things had come.

How do you say thank you for something like that?

All I could think to say, remembering the day I’d seen the brave woman on TV and finally admitted to myself I had a problem was, “Dr. J, you’re my hero.”

He looked a little confused for a second, a bit uncomfortable before replying, “But…you’re the hero. You’re the one doing all the fighting.”

Now how do you not love a guy like that?