Archives for 2017

Caregivers: Put on Your Own Mask First

Caregivers: Put on Your Own Mask First

You know those safety demonstrations at the beginning of a flight, where they go through the plane’s safety features?

Remember what they always say about the oxygen masks?

“If you’re with someone that needs assistance, always put on your own mask first.”

You’re thinking that’s selfish maybe, but it’s critical advice – and not just for airline passengers.

US Engineer Destin Sandlin simulated the experience of losing cabin pressure in-flight, and found out how little time it takes to become mentally incapacitated. Within two minutes of trying to breathe in low-pressure, Sandlin could no longer identify basic shapes or perform simple tasks. He couldn’t have put on his or anyone else’s mask if he’d wanted to.

How long do you think you’d have between realizing the pressure was dropping and fumbling your mask on? It’s probably less than two minutes, even if you’re moving efficiently and thinking clearly, and by the time you notice the symptoms it’ll be too late. If you put yours on first you’ll have all the time you need for theirs, and you’ll save two people; but try to take care of them before yourself and you’ll both be lost.

There’s an important lesson there for caregivers. Our internal caregiver resists the advice to “care for yourself first” because it seems selfish. We frantically try to help those around us, neglecting ourselves until we’re incapacitated before we realize it.

How long do you think you’ll have before becoming so exhausted you can’t take care of yourself OR your loved one? Maybe you won’t notice it until you lose your balance and break a leg, or fall asleep behind the wheel, or develop a sudden pneumonia and wind up in the hospital.

Caregivers wear many hats and must often learn new skills, which is stressful and increases our need for rest. Skimp on rest in that situation, and you’re set up for depression and deteriorating physical wellbeing – leading to what is known as Caregiver Burnout.

What is Caregiver Burnout?

According to WebMD, Caregiver Burnout is the state of physical, emotional, and mental exhaustion that can occur when caregivers don’t get the time to care for themselves. Signs of Caregiver Burnout can include: fatigue, stress, change in sleep patterns, getting sick more often, and withdrawal from friends and family.

Thankfully, having a solid self-care foundation can prevent this from happening.

What is Self-Care and how do I do this?

Simply put, self-care is budgeting time to make sure your own needs are met, in four critical areas: physical, emotional, social and spiritual.

Examples:

  • Physical Self-Care: exercise, taking walks, trying yoga, following-up with your primary care provider, hiking, meeting with a nutritionist
  • Emotional Self-Care: journaling, joining a support group, finding a mentorship program, practicing mindfulness, counseling
  • Social Self-Care: going to the movies, volunteering in your community, joining a club, spending time with your friends, taking a mini-vacation
  • Spiritual Self-Care: reaching out to the faith community, meditating, spending time alone with yourself and reflect on life goals and accomplishments, spending time in nature and enjoying a sunset, reading spiritual literature

If you take care of yourself first you’ll have the strength and energy to care for your loved one. But if you neglect yourself in favor of your loved one, you’ll both be lost.

So remember to put on your own mask first.

Sources:

https://www.huffingtonpost.com/refinery29.com/why-youre-instructed-to-p_b_11201778.html

https://www.webmd.com/women/caregiver-recognizing-burnout#1

https://www.merriam-webster.com/medical/self-care

Clinical Trial Award

Clinical Trial Award

Getting the most advanced cancer treatment to patients requires that cancer doctors do two things: support the process that develops these treatments, and give their patients access to these trial-phase treatments.

However, only one in five U.S. oncologists participates in the NCORP – the National Cancer Institute’s pipeline that delivers clinical trials from the academic centers to the community cancer clinics – and it’s easy to understand why: it’s lot of grant-writing, administrative work, and staying informed enough to match patients to trials that might help them.

But if you’re dedicated, you make time for the important things – and Green Bay Oncology physicians are dedicated to clinical research.

Though only a minority of NCORP physicians get recognized for excellence in patient enrollments, this year five Green Bay Oncology physicians received this honor:

●  Dr. Brian Burnette – Gold Certificate
●  Dr. Sigurdur Bodvarsson – Silver Certificate
●  Dr. Anthony Jaslowski – Silver Certificate
●  Dr. Matthew Ryan – Silver Certificate
●  Dr. Ruth Warren – Silver Certificate

Recognition is nice, but doing the right thing for people facing cancer is even better – and that’s why our physicians keep at it.

It’s the right thing to do.

Remembering Becky

Remembering Becky

I first got to know Becky through my wife, since she worked with Becky’s fiancée. They had bonded over a shared love of professional hockey, something that is not common in Wisconsin.

We’d invited them to our home for a game between our two clubs in late 2006 – but it became the night everything changed.  On a snack run to the kitchen, Becky quietly tagged along and started asking me questions about something called mesenchymal chondrosarcoma – and was I familiar with it? Even though I’d been a cancer provider for years by this point, I’d never heard of it. Then she confided that she’d been diagnosed with it, and it was already metastatic.

Naturally I started reading up on the condition, and what I found out wasn’t reassuring. Mesenchymal chondrosarcoma is exceedingly rare. It was first described in the 1950’s, and less than a thousand cases have ever been reported. Even worse, it usually responded very poorly to chemotherapy or radiation therapy, though surgery could be somewhat successful – and at first Becky seemed to be one of those surgical successes. She underwent extensive operations to remove the multiple tumors from her lungs. After that, she went through aggressive chemotherapy to kill off any cancer left in her body. It was harsh, difficult treatment and she spent a lot of time in the hospital, but she recovered. And for ten years after that, it seemed like she’d beaten the odds – every checkup and every scan looked good – and she felt good, with no apparent side effects of the treatments she’d gone through.

My wife and I thought we’d won, too, because our friendship grew during that time. We got to know the rest of her family, and she became an aunt to my two older daughters.

But in 2010, she developed pain in her left side and sudden kidney failure; the cancer was back, and had so overgrown her left kidney that it needed to be removed – and the echocardiogram she had as part of preoperative evaluation showed the cancer had even grown into her heart itself. Her care team then proposed a more radical approach: open heart surgery to remove the tumor there, followed by removal of the kidney once she’d recovered enough. Though it was an extreme thing to undergo, Becky prepared for surgery as she did for all her battles – with incredible strength and dignity.  Both of these surgeries took a huge physical toll on her, but her spirits and love for life remained firmly intact.

After all that, it was time for more chemotherapy and Becky asked Green Bay Oncology to direct that part of her care so she could be closer to home. That was when I had the honor of not only being her friend, but of participating in her care.

Over the next 16 months she went through two different chemotherapy regimens without a break, and. I was amazed how she was able to differentiate her two lives, the treatment side and the normal life side.  When we met socially, away from the cancer clinic, she never brought up her condition.  She told me once that her cancer might dictate the length of her life, but it wouldn’t define her life – and that she wouldn’t even give it more space by talking about it.

And it did dictate how long she lived, unfortunately. The cancer eventually spread to her other kidney. I know, because I was the one who told her about it. I was the one that told her time had run out. But even then she kept living – after several failed attempts to call her to set up hospice care, I found out she was at work training her successor – and this was four days before she died. That’s how Becky was, unselfish and dedicated, and that’s how we remember her: Becky the loving sister, aunt, and stepmother; not Becky the cancer patient. My oldest daughter still talks about Auntie Becky, and something of Becky still lives in the stories she tells her sisters who didn’t get to meet her, and in the memories I still share from time to time with Becky’s sister.

I’ve known and befriended many patients and their families during their care, but Becky was the only patient I’ve ever had who was first a friend. There was something about that perspective that made me better appreciate how important end-of-life care is for people, and helped me grow as a healthcare professional. I hope Becky knows how grateful I am for her friendship over the many years, and what she taught me professionally.

Special thanks to the family of Becky.

The Puppy

The Puppy

12 years ago the sweetest 3 year old girl gave my mom her favorite puppy.

She told mom that when she feels bad, it always makes her feel better.  For the next 2 months that puppy was always within arms reach, and I truly believe it did make her feel better when many of the things she was going through with breast cancer did not.

A week after mom left us way too soon, that little girls favorite puppy was returned to her.

During those precious final two months, we had many long conversations about life and the future. One thing she told me was that my hurt in losing her will begin to fade when I have children.  While she was somewhat right, knowing how much joy she would have given our two girls and how much joy they would have given her; I miss her more, not less.

A week after our first daughter Iris was born, in a nondescript box, and without a letter; the same puppy arrived in the mail for her.  That same 3 year old who’s now nearing her drivers license could never know how much a simple act means to me and my family and how much it meant to my mom.

Children should not grow up without a grandma. 

Open your hearts. Open your wallets. Support the American Cancer Society where they work every day to help women with breast cancer become grandmas without.

Donate to Team Brian

Don’t Forget Uterine Cancer (even in pink October) 

Don’t Forget Uterine Cancer (even in pink October) 

Uterine cancer is the fourth most common cancer type in women – not that you’d know it from the (nonexistent) press coverage.

Almost 3% of women will be diagnosed with endometrial cancer at some point during their lifetime. 

It’s also called endometrial cancer since it usually starts in the inner lining of the uterus (called the endometrium). Most cases occur in women aged 45-74 and present with unusual vaginal bleeding or pain in the pelvis. 

The most common risk factors include obesity, certain inherited conditions and taking estrogen alone (without progesterone). Women who take Tamoxifen for breast cancer also have an increased risk of developing endometrial cancer.  

Uterine cancer is often curable, but women may have to go through surgery and/or radiation and/or chemotherapy to achieve cure. As with most cancers the earlier it’s diagnosed the better the chances. Approximately 80% of women who are diagnosed with endometrial cancer can be expected to survive for 5 years or longer.  

Even though breast cancer grabs all the headlines (especially in October), women need to be aware of the signs and symptoms of uterine cancer. It is especially important that post-menopausal women who experience vaginal spotting or bleeding seek medical attention.  

Early diagnosis is key to a good outcome! 

Lymphomas – What are they?

Lymphomas – What are they?

Posted at regular intervals along our body like checkpoints on the border between hostile countries, our lymph nodes form a critical barricade against infection.

These checkpoints are manned by lymph cells (aka lymphocytes) that come in two varieties: T-cells and B-cells. But sometimes instead of being the protectors, these cells go rogue and become cancers called lymphomas in which mutant lymphocytes multiply out of control and overcrowd the lymph nodes and bone marrow – which causes the enlarged lymph nodes, fatigue, and low blood counts we associate with the disease.  

Like all cancers, lymphoma occurs when genetic errors cause cells to behave erratically, just as a corrupted computer code causes problems.  

In lymphoma, these mutations occur three main ways: 

  • Risky genetic revision by lymphocytes. Lymphocytes have to be able to manufacture cells capable of recognizing infinite variation in potential invaders, otherwise our immune systems couldn’t adapt. They accomplish this the same way English makes an infinity of words from only twenty-six letters: by combining different combinations of letters. Similarly, lymphocytes produce an infinite variety of “sniffer receptors” from a finite number of genes. The variety comes from lymphocytes’ ability to copy, revise, and recombine these genes in endless combinations. But it also means that, with all that gene-revising going on, a few cells have accidents that turn cancerous. 
  • Viral hijacking. Viruses insert their genes into host cells, and this sometimes triggers cancer transformation – though this is a much less common cause of lymphoma than the first one above. Several viruses can do this, including the Epsetin-Barr virus and the HIV virus. 
  • Inherited mutations. Some people are born with mutations that take them part of the way to developing a cancer. This is well-known in colon and breast cancers, but BRCA1 and BRCA2 mutations also predispose to lymphoma development.

How do checkpoint inhibitors work, anyway?

How do checkpoint inhibitors work, anyway?

Picture a common movie scenario: the police have the bad guys surrounded, locked down inside a building – but there are hostages in there too, and if the cops go in shooting they won’t be able to tell the victims from the villains.

“Die Hard”, “Inside Man”, and “The Dark Knight Rises” have all done variations on this idea. I bet you can even think of a few more. 

But this familiar movie scenario can help us better understand the difficulty the immune system has trying to fight cancer, and how the new class of cancer drugs called checkpoint inhibitors can overcome it.  

So, let’s apply our “bad-guys-with-hostages standoff” analogy to an immune system trying to eradicate cancer, and see what we can learn:  

  1. Your immune system, like a good police officer, must sometimes restrain itself. A SWAT team storming in at every opportunity can cause terrible collateral damage, just as an unrestrained immune system can cause terrible diseases like rheumatoid arthritis and lupus. That’s why your immune system’s T-cells have special receivers sticking out of them like antennae dishes, listening for the signal to “stop” – and when the T-cell gets that signal, it backs off. We call these “stop signal” receivers checkpoint inhibitors – one of which is PD1. 
  2. Some cancer cells fool the immune system the same way the villain fooled Bruce Willis in “Die Hard”. When Bruce Willis’ character got the drop on the main villain Hans Gruber (who he’d spoken to but never seen), Hans faked an American accent and passed as a hostage (“Oh no please don’t shoot, you’re one of them aren’t you…”). In a similar way, some cancer cells have learned how transmit the “stop” signal by making a special molecule that sticks from its surface and binds to PD1 on attacking T-cells – which turns them off. We call this “stop signal” molecule PDL1. 
  3. Preventing the PDL1 “STOP” signal from reaching T-cells invigorates the immune system enough to attack some cancers Drugs like nivolumab and pembrolizumab (which interrupt the PD1/PDL1 interaction) put the fight back into the T-cells, allowing them to attack the cancer – but with much less of the “collateral damage” that we’ve seen in other types of immune enhancers.  

Here’s a video that explains the process visually. 

We should celebrate the success of these drugs, but have to remember that no cancer drug in history has ever been a “cure-all”. We have to remember that there a great many more checkpoint inhibitors than PD1, so there’s many other ways for cancer cells to escape the immune system.  

We have to remember we still need good clinical trials, and patients willing to participate in them.

(Up Next: Pembrolizumab approved for a slew of cancers all at once)

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: How do checkpoint inhibitors work, anyway?)