Category: Metastatic Melanoma

“Your scans show no change and you are stable. No further treatment is advised. Medically, we should plan a PET scan appointment in six months. Of course, if you notice any health changes before that date please call us.” These are the words I hoped to hear from my oncologist.

While “No Evidence of Disease (NED)” would be preferable, stable has been my situation for the past 16 months, and the longer I remain stable, the less likely that melanoma will eventually progress — stable improves with age.

I know that stable means that treatment is working, because if treatment were not working, advanced melanoma would spread rapidly to other organs, and my central nervous system. Moreover, without treatment, the average lifespan of a person with advanced melanoma is about one year.

As new treatments are developed, living with stable cancer is becoming more common for several types of cancer, including advanced melanoma.

Many or most patients living with cancer experience anxiety about disease progression. Body pain is part of their everyday experience and some of these pains are almost guaranteed to provoke fears of disease progression. A headache might mean a brain tumor, and a backache might indicate a spinal bone tumor. Fortunately, most pains are short-lived and can be interpreted as temporary discomfort due to exertion, minor injury, or nervous tension.

A daily dose of ibuprofen and acetaminophen also does wonders to get me going in the morning. Yoga, mindfulness meditation, and swimming help me stay more pain free and keep my anxiety within manageable levels. It’s also helpful to interact with other cancer patients to express our fears.

 

 

 

 

During Interleukin-2 (IL-2) infusion treatments at Providence Cancer Center, I lived in a room with strategically placed “Risk to Fall” signs. I was confined to an alarm bed that notified the nurses immediately if I ever attempted to leave the bed without supervision. In addition, I was wired for constant EKG and 15-minute blood pressure monitoring.

You might say, the hospital was working overtime to mind “Risk to Fall.” IL-2 treatment causes lowered blood pressure, which can produce sudden fainting and serious falls; Providence has devised near-fool-proof safety measures.

Unfortunately, my personal calculations about Risk to Fall haven’t been trustworthy.

On January 4, Eddy and I were staying at a hilly location in South Eugene, when a regional snow and ice storm was causing traffic disruption in the Willamette Valley. We had already wintered over an extra night and we were eager to return to Portland.

With a cavalier calculation of risk, I dressed for the cold and ventured out to recon the nearby roads on foot — to determine whether it is safe to drive. As I was completing a one-mile loop, at a short downhill stretch on asphalt, my feet suddenly slipped out from under me and I toppled backward on bum, back, and head.

I was shocked; why would such a short fall hurt like this? Better lie still for a moment in case I black out. Will this pain subside, should I call for help, will my body go into shock?

I was able to rise and hobble back to the house where we were staying. There I curled up on the carpet, blanketed to avoid shock and we discussed options for first aid, settling on a muscle relaxant and tylenol. Later, in Portland, we checked me into immediate care and got prescription for heavy duty muscle relaxants, anti-inflammatories, and pain medication. The doctor’s opinion was that I have a muscular-skeletal injury, probably no broken bones or nerve damage.

The past few days have been challenging. There’s no way to get comfortable without pain management, which wears off in too-few hours. Sleep is fitful and populated with “interesting” dreams.

Many people with cancer wind up with a heightened risk of falling, as a side-effect of treatment or of the disease itself. I now realize how overconfident I have been about walking in ice and snow.

 

Waiting for test results from CT, PET, or MRI scans leads cancer patients and their families to feel anxiety. This led to the coinage of “scanxiety,”  a familiar term to many cancer patients.

Hold on. What if I assume that the upcoming scan results will provide good news, such as “my cancer is still receding,” “my cancer is still in remission,” or “my cancer is no longer detectable?” Wouldn’t that assumption help me stay calm, and suggest a newly-minted word such as “scanquility?”

My latest scan, an MRI, occurred last Wednesday before Thanksgiving Day. It will provide high-resolution pictures of my lower back and pelvis to double check a dagger-shaped hot spot which appeared in my last PET scan. Now is the opportunity to experience scanquility, without the nagging thought that I’m in denial. The chance of actually finding a new melanoma lesion in my lower back is remote, but not so remote that doctor would forego the test.

I am thankful that he is thorough.

So I’m practicing scanquility. Next Monday, we will meet with Doctor Curti and get objective evidence about whether anxiety or calm is the more appropriate emotional response for this test.

Post Script: Monday November 30, 2015

Doctor Curti reports that that the lumbar MRI shows nothing that would indicate melanoma is present in the region where the hot spot was seen, nor anywhere else in the lumbar region. That means I’m still STABLE, and continuing with watchful waiting for three months!

Here’s the thing: Expecting a positive result saves a lot of energy that would be spent on anxiety, while apparently costing/risking nothing more than an unlikely disappointment.

Dr. Curti has a pattern of saying “your scans are good” as he opens the office door – unless they aren’t. I know that something is off when he walks in with, “Hello how are you?” and his characteristic handshake.

The PET scan of October 9th requires discussion. He starts from the top and works down as we view the PET scan on the exam room computer screen.

• Brain, OK
• Head, OK
• Neck, OK
• Lungs, OK
• Chest lymph: stable (tumor neither growing nor shrinking)
• Liver and kidneys: OK
• Stomach and bladder: OK

We arrive at a new hot spot in the muscle in my left hip near my spine. I see the area glows with a reddish blob of color, very close to the light grey spine. Dr. Curti is saying that this could be a strained, stretched, or injured muscle; we can’t be sure from this test. While it is uncommon to find melanoma in muscle, it is best to respect the enemy.

“Have you been having lower back pains?” he asks.

“Yes, I frequently have pains in my back, mostly upper, and sometimes lower. I don’t recall noticing a lot of unusual pain in that area,” I say.

Dr. Curti emphasizes we should follow up with testing to see what’s there. We schedule an MRI in seven weeks – long enough for the area to heal by itself if it will – short enough to waste little time if there is pathology. Should the MRI reveal a continuing problem, a biopsy will follow, and more treatments are available, if needed.

I appreciate Dr. Curti’s conservative approach and I want to cooperate. But, I really think the hot spot is a muscle strain caused by that leg-in-the-air-back-bend yoga pose of last Thursday’s yoga class.

Researching the PET and exercise, Eddy found that Science Daily reported a study where 13% of 1,100 PET scans produced false positives related to prior muscle activity before the scan. I am convinced that even light exercise 48 hours before PET is a poor choice because it can lead to false positive results.

Jimmy Carter, with characteristic forthrightness, personally announced four small tumors have been spotted in his brain by MRI testing. He had surgery to remove a tumor from his liver a couple of weeks ago, and had been warned that cancer had likely spread to other parts of his body.

Now we know that his liver cancer was actually metastatic melanoma, which has spread to his brain.

His medical team at Emory have started infusions of Pembrolizumab, a drug that revs up the immune system to attack melanoma systemically. They will also start Stereotactic Radiation, directed at the tumors in his brain, immediately.

Pemprolizumab was recently approved for treatment of advanced melanoma, and it seems reasonable to apply that treatment straightaway, since it will help reduce tumors system-wide, even in the brain. The medical team at Emory will be watching Carter very closely for signs that his revved-up immune system is attacking healthy organs, a problem that happens in a small percent of patients.

Stereotactic Radiation is administered by “gamma knife,” a computer-guided machine that uses a 3-D map of the patient’s brain to guide precise pulses of radiation converging on the location of the tumors. This treatment is effective at shrinking and destroying tumors. Side effects include serious fatigue and problems with buildup of pressure. In some cases this fluid pressure may require surgery to relieve the pressure.

Personally, if I were Jimmy Carter, I would probably take the immune therapy and hold off on the radiation to see if the brain tumors respond without it. I’m admittedly biased toward newer immune-system treatments and against radiation, even in targeted doses. A likely counter-argument is that if Carter cannot tolerate Pemprolizumab, then it would beneficial to have administered radiation while the tumors are still small.

Jimmy Carter is 90, and a decision to forego further treatment would also be reasonable. This would be a difficult and unpopular decision, especially for Rosalynn and other family members who do not want to lose their beloved. The Emory medical team are also motivated to do all they can to help their high-profile patient.

Jimmy Carter has been such a remarkable citizen, president and example of decency and goodness. May his treatment be helpful and his soul untroubled in the days ahead.