Metastatic Renal Cell Carcinoma and Melanoma

Eddy & Lisa in Montmartre
Eddy & Lisa in Montmartre

Research trials have shown that two metastatic cancers, melanoma and renal cell carcinoma (RCC), respond to infusion with high-dose Interleukin-2 (IL-2). Of patients who respond, some have complete response (remission), while others have partial response. Because of favorable trial results, the U.S. Food and Drug Administration (FDA) has approved IL-2 for treatment of both metastatic melanoma and RCC.

Providence Cancer Center reports that 28% of 500 patients treated with IL-2 between 1997 and 2012 responded. Response rates are similar for both types of cancer. Despite such positive results, it seems IL-2 is often not discussed, nor offered to patients with metastatic melanoma nor metastatic RCC in many medical centers.

Lisa Taylor Huff was diagnosed with kidney failure caused by renal cell carcinoma (RCC) in December 2014. Doctors removed the affected kidney as quickly as possible. With early detection, RCC can be surgically removed with a high probability of survival; Lisa hoped for this outcome.

Unfortunately, RCC often advances outside the kidney before symptoms appear. CT scans revealed small metastatic tumors in Lisa’s lungs and lymph nodes and her medical team recommended a course of targeted chemotherapy using sunitinib (Pfizer trade name is Sutent) to treat the metastatic tumors.

Eddy and I visited Lisa in Paris just as she was beginning chemotherapy. She hosted us for lunch in Montmartre followed by a guided tour of the Eiffel. Her exuberance and love for Paris and her Parisian family was evident in all out interactions. Lisa had recovered from kidney removal surgery, her energy had returned, and she was optimistic that Sutent would be tolerable and effective against her cancer.

A few weeks after leaving Paris, we learned that Lisa’s treatment had been terminated because her body was not responding to the treatment and the side effects were causing problems in daily life. Lisa’s health declined precipitously and she died in early July 2015.

To my knowledge, Lisa’s medical team never discussed treatment with IL-2 with her. A treatment with about a 25% chance of improving her disease was not offered nor discussed. This is hard for me to accept, especially since another personal friend with the same diagnosis is disease-free three years after receiving IL-2 at Providence.

This is not a critique of French medical care, which is excellent. Rather this is a my critique (based on limited anecdotal evidence) of medical teams who are not offering IL-2 to their metastatic melanoma and RCC patients.

I am suspicious that many medical teams are choosing not to offer IL-2 because:

1. IL-2 requires blood pressure and heart rate telemetry as well as nursing staff with special training. Most medical centers are not set up to administer IL-2, and offering it means referring the patient to another medical team.

2. A full course of IL-2 requires 6 weeks of hospitalization. Some patients will balk at this requirement, especially if the alternative is a pill to be taken daily.

3. IL-2 is recommended for patients who are in excellent health (apart from their terminal cancer diagnosis). Not many people are feeling robustly healthy, especially when they’ve just been given a terminal diagnosis.

4. About 75% of metastatic cancer patients do not respond to IL-2. Patients may assume that if they were unlucky enough to get cancer, they will be unlucky when it comes to the efficacy of IL-2.

Hospital administrators and medical teams might rationalize opting for targeted chemotherapies, which generally are easier to administer, and offer somewhat more favorable response rates. But today’s targeted chemotherapies do not offer the possibility for durable complete remission.

Here’s the clincher: If IL-2 treatment fails, then targeted chemotherapies are available as a fallback, whereas IL-2 will invariably fail if not given prior to any other targeted chemotherapy.

Choosing Your Oncologist

Marty with treatment directors Payne and Curti
Marty with treatment directors Payne and Curti

When I became ill with symptoms that resembled a chest cold that would not go away, I saw my primary care doctor. Since I am not a smoker, my doctor assumed pneumonia. To confirm his diagnosis, he ordered an old-fashioned chest x-ray. The radiologist advised him that the films revealed abnormalities, and that he should order a CT scan.

I got the CT scan the next morning and promptly received a call from my primary care doctor requesting a next-day appointment. Suspecting serious trouble, I asked Eddy to join me for this appointment.

My doctor didn’t mince words when he said, “It’s never good news when your doctor calls you for a next-day appointment. It’s my job to give you some bad news. Your CT scans show that you have cancer, probably broncio-genic lung cancer, meaning that it began in the bronchial tube. You have tumors in your lungs and in the lymph nodes in your central chest cavity. The number, size, and location of these tumors is inoperable. I have spoken with an oncologist, whose work I respect. He thinks that it is possible that he may be able to help you. I recommend that we refer your case to him.”

You do not hear these words from your primary care doctor — It was hard. I said silently to myself: “So this is what it sounds like when you learn you have a terminal disease and will die soon.”

My second thought was: “I wonder if this could be related to the melanoma that I had 30 years ago?” When asked, my doctor didn’t think so, but admitted there was a chance it could be melanoma once again. He concluded by saying, “It would be better for you if it this is melanoma, since there are new treatments that may be helpful with melanoma.”

While I don’t know a lot about cancer, I know that different types of cancer have different courses, different treatments, and different probable outcomes.

We made an appointment with the recommended oncologist and decided to follow him, at least temporarily. Most important, he oriented all efforts toward identifying the specific type of cancer we were up against. More tests, more specialists, and nearly a month elapsed before we were sure the cancer was metastatic melanoma with the BRAF mutation. My oncologist proposed a first-line treatment with high-dose Interleukin-2 and referred me to his associate, who has more experience with melanoma treatment. I appreciated this referral, but was not yet willing to accept it.

Here’s the thing: advanced cancer is deadly, and different forms of cancer require different treatments and different knowledge. I wanted an oncologist with years of experience in treating metastatic melanoma, and a hospital staffed with people experienced in reliably providing the recommended treatment.

Fortune smiled. A person from my Quaker network, who had successfully received the same recommended high-dose Interleukin-2 treatment approached me and recommended a local oncologist that she follows. I felt bad about rejecting the referral from my oncologist, but my friend’s oncologist has been doing research and practice in melanoma treatment since the 1980s. When I cross-checked his credentials on the Internet, he seemed to have just the combination of experience and wisdom that I was seeking.

The initial visit with Dr. Curti confirmed my impressions. He is a melanoma and renal cancer specialist, deeply experienced in the high-dose Interleukin-2 treatment, certain of the treatment protocol, and backed by a trained team at Providence Cancer Center. His interpersonal skills and communication style are impeccable. I decided to follow him at that meeting in late January, 2014.

After successful completion of the difficult treatment regimen, involving six weeks of hospitalization and a very tricky protocol, I have the highest respect for Dr. Curti and the Providence Cancer Center team.

Stories of cancer treatment failure abound. Advanced cancer is always life-threatening and I recommend that you make your best effort to locate the most experienced, specialized oncologist that you can access. If you live in a rural area, plan on traveling to an oncologist at a major regional treatment center. Look for a deeply experienced team that has treated hundreds of patients with the identical diagnosis to yours. If it’s not possible to access the best oncologist for your type of cancer, perhaps you can at least visit one for a second opinion.

In researching her book Radical Remissions, author Dr. Kelly Turner, PhD., found that taking charge of treatment planning and choosing the medical team is one of nine things that distinguish cancer patients in remission from those who did not survive. Dr. Kelly recommends: Be actively involved in decisions related to your health care. Learn how to do your own research. Be willing to make healthy life changes, and stand strong when you get push-back from others around you.

 

Pain and Progress

Marty applauds continuing progress
Marty applauds continuing progress

When Dr. Curti announced that the CT scan of July 10th is showing continuing regression of melanoma tumors in my chest, I was surprised and greatly relieved.

I tend to subjectively gauge my progress based on body sensations, especially pain and energy level. Since I have chest pain almost every day, and I often feel tired, it’s tempting to become suspicious that my body is losing the fight against cancer.

Progress in the treatment of cancer doesn’t always feel good. As my Doctor has patiently explained, in my particular case, chest pain can come from causes that do NOT signal progression of cancer. One way to think of this is: Tumors in my chest grew outward from lymph nodes in the mediastinum and attached to surrounding tissues. As my immune system dismantles these tumors, scar and necrotic tissues tend to remain for awhile as the process continues. This extra tissue binds surrounding tissues and organs, causing some inflammation and soreness.

On a positive note, my pain responds well to ibuprofen and tylenol, as it has for several months. This continuing response to lightweight pain meds supports the notion that the cause of my pain is not growing tumors.

It’s a happy day here in Portland and we are celebrating this good news.

Cancer and Mortality

Connie Crooker the Melanoma Momma
Connie Crooker, the Melanoma Momma

Four friends have died from cancer during the last 18 months: George, Connie, Shari, and Lisa. Three were in my cohort and Lisa was not much older than my daughter. Each of them had a different form of cancer; all of them died before their time, facing their death with courage and dignity.

Cancer is quite common these days. According to epidemiologists, one out of three people will be diagnosed with cancer sometime during their lifetime. Although medicine has progressed in understanding causes and developing treatments, many forms of cancer still end in death. Cancer causes about 25% of deaths among adults in the U.S. each year.

In these days of remembering my friends, I am reminded of my personal vulnerability to the insidious power of cancer. It’s also difficult to feel sanguine about progress with my treatment when others are not so fortunate with their treatment.

It seems wise to have my life in good order should mortality also visit me before my time, while taking my best care to live healthy for today. To that end, Eddy and I are working out cemetery arrangements and decluttering the garage.

Bucket Lists and Paris

The Eiffel in February
The Eiffel in February

Popular culture has a romantic notion that people with a terminal diagnosis should construct a bucket list – a list of goals to achieve before the end of life. Movies like The Bucket List (2007) seem to feature cancer victims. This is probably because persons with cancer often get a potentially life-ending diagnosis, followed by a period of improved health following treatment.  Continue reading Bucket Lists and Paris