Clinical trials and their role in lung cancer treatment: a brief introduction

If you’re receiving top-notch care for advanced lung cancer, your oncologist should be talking with you about clinical trials. Clinical trials are tests, in human patients, of new medications, new combinations of medications, and/or new approaches to treatment. While it might sound scary at first to receive a medication or treatment that is still being tested, sometimes it is the only way to get access to the most effective treatment for your particular cancer. (If the term “clinical trials” hasn’t even come up in conversation with your oncologist, consider looking for a better one.)

This is because lung cancer treatment is changing so rapidly. New and promising approaches to treating lung cancer are being discovered all the time. Sometimes, although a medication or approach to treatment is still in clinical trials, there’s already good evidence that it is safe and works better than standard care for certain patients. Sometimes a medication or treatment has been around for a while and is known to be safe and have few side effects, but is being tested in combination with standard lung cancer care. In these cases, the risks can be low and the promise of greater effectiveness can be high – especially in the treatment of advanced lung cancer, where standard treatment is, unfortunately, still pretty limited in its effectiveness against the disease.

In the lab, a drug may seem to have promising cancer-fighting properties. Scientists can’t know for sure how it will work in humans, though, until humans try it. Therefore, the Food and Drug Administration requires carefully regulated tests of drugs in human patients to determine how safe and effective they are.

Clinical trials of new drugs and treatments proceed through three phases. In Phase I, a very small group of people are given the drug or treatment for the first time to determine safety, dosing, and side effects. In Phase II, a larger group of people receive the drug or treatment to evaluate its effectiveness. Finally, in Phase III, a large group of people receive the drug or treatment to confirm its effectiveness, compare it to commonly available treatments, and monitor its side effects. Drugs and treatments have to make it through all three phases before they can be approved for marketing. In every phase, if a drug turns out to be too toxic, the trial is halted and researchers return to the drawing board. There is also a Phase IV, consisting of studies done after the drug or treatment is on the market to evaluate long-term effects in various populations. (This description of the four phases is paraphrased from information provided by the National Institutes of Health at  http://www.nlm.nih.gov/services/ctphases.html)

The number of clinical trials going on at any one time is quite overwhelming, even just the clinical trials for lung cancer treatments. All current clinical trials are listed in a public database at www.clinicaltrials.gov, which anyone can access. Some patients become very adept at learning about clinical trials, zeroing in on the ones that seem most promising for them, and getting enrolled even if it means going to a distant city for care. More often, your oncologist becomes the guide to the clinical trials in which he or she is able to enroll patients, identifying which ones make the best sense for you. Large cancer centers generally have access to more clinical trials than small ones; at some point, your local oncologist may recommend getting seen at a bigger center to find out what trials they have available.

In my short career as an advanced lung cancer patient, I’ve already been in three clinical trials. The first one was a study of a safe, commonly used antimalarial drug that has been around forever but was recently discovered to have potential cancer-fighting properties; I took it in combination with standard chemotherapy at Rutgers Cancer Institute of New Jersey. I dropped out of that study when Dr. Saraiya recommended briefly stopping my chemotherapy for some additional testing.

The second was a study of a PD-L1 inhibitor, a compound thought to enhance the cancer-fighting ability of the body’s own immune system. I was enrolled in this study through Memorial-Sloan Kettering Cancer Center, but not for very long. The first step was finding out if my tumor had the PD-L1 protein – even the test for the protein was experimental, so I had to be in the trial to be tested. I didn’t have the protein, so that was that.

Currently I am in a study of crizotinib, the drug on which I am now doing so well. I am also enrolled in this one through Memorial-Sloan Kettering. This is one is a bit confusing because it’s actually a Phase I study, even though crizotinib is now on the market under the name Xalkori. My doctor at Memorial-Sloan Kettering explained to me that sometimes, even when a drug has already “passed” one or more phases of testing, researchers keep enrolling patients in early-phase trials. This way, they can continue to collect important data without having to get a whole new trial approved.

I find it exciting to be in clinical trials. I feel like I’m on the cutting edge of medicine; even though I’m not a doctor or a scientist, I’m helping develop better treatments for cancer by trying them.

The National Institutes of Health provides a list of Frequently Asked Questions about clinical trials here: http://www.nlm.nih.gov/services/faqctgov.html

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Talking with a young child about advanced lung cancer

My daughter was seven when I was diagnosed. Now she is eight. She is beautiful and my number-one motivation to live and stay strong as long as possible.

When Chris and I first received the terrible news from the surgeon at Sloan-Kettering that my cancer was inoperable (and we knew that meant a median life expectancy of about eight months), we were both too upset to talk to anyone without sobbing. My friend Alexis, who had taken notes during the consultation, found us a place to sit and cry, and helped us make the necessary phone calls to immediate family. We couldn’t imagine what we would say to our daughter, though.

From New York, we called our family therapist. He was great. He suggested that we speak truthfully with our daughter, but for now only discuss the present and the immediate future: Mommy Beth is very sick. She has something called cancer. The doctors are trying to help her.

He pointed out, very helpfully, that a seven-year-old has a limited sense of the future. If we told her I was dying, no matter what we said, she would think it was happening tomorrow or the next day, and be unnecessarily terrified. She wouldn’t have a good sense of what “eight months” even means, let alone a median survival time.

So we told her I was very sick with cancer, and getting help from the doctors. We tried to do what they say you should do when talking with small children about sex: answer all her questions, but only answer the questions she was actually asking. She wanted to know if it hurt, and if I had to get a shot. She wanted to know if we took a taxi in New York — she likes taxis. That was about it.

The school counselor sent home a lovely book from the American Cancer Society, Mom and the Polka Dot Boo Boo: http://acs.bookstore.ipgbook.com/mom-and-the-polka-dot-boo-boo-products-9780944235874.php?page_id=32&pid=ACN. It’s about early-stage breast cancer, not advanced lung cancer (and breast cancer’s excellent five-year-survival rate definitely shows), but we found it useful for explaining what cancer is. It communicated that after treatment, Mom would be well enough to play again – and we thought that I probably would get well enough to play again, even if not permanently.

I brought her along to the Hamilton cancer center one day. I showed her the chairs where I would sit for treatment. I showed her the conference room with the pretty fish tank. Dr. Saraiya was out that day, but she met the research nurse and some of the other nurses.  I think she was less frightened and confused knowing where I would be on treatment days and what it looked like.

Since then, our conversations have evolved. She’s getting a little older. Our beloved cat died, which brought death to the forefront of her mind. Ironically, when I learned I was ROS-1 positive and started taking crizotinib, she overheard a lot more scary stuff around the house that confused her. (We were feeling optimistic and talked freely with each other and visitors about how this latest news changed my outlook, but all she knew was that something serious and intense was happening, and life and death were coming up a lot in adult conversations.) I sat down with her for another talk: I told her that people die from cancer. I told her that the doctors thought the medicine I was getting in New Jersey wasn’t helping me enough, and that they wanted me to go to New York for better medicine. I told her I wanted to stay alive and be with her as long as possible.

She wanted to know who would take care of her if I died. I told her Mommy Chris would take care of her. Then she wanted to know who would take care of her if Mommy Chris died. I told her I would. Then she wanted to know who would take care of her if we both died. I told her about the close family friend who has agreed to take Nevaeh if anything happens to both of us. She said she didn’t want me to die, or Mommy Chris, or the dog. I said I didn’t want that either, and that I was going to do everything I could to stay well.

It doesn’t come up as often now. I feel more hopeful these days that I may be here for her for at least a few more years – and healthy enough to make her favorite meals, help with her homework, and play.

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Palliative care for lung cancer: getting help for your symptoms

Shortly after my diagnosis, a physician I knew socially said, “Call me if you have questions. I’m board certified in palliative care.” I was polite, but quietly took offense: how dare he tell me I was dying when he wasn’t even my doctor? Like many people, I had only ever heard the term “palliative care” in connection with hospice. I thought it meant keeping patients comfortable after they gave up on getting better.

Not long after that, though, Dr. Saraiya explained that he, too, is board certified in palliative care — and that palliative care doesn’t just mean hospice care. Palliative care, he explained, is treating a patient’s symptoms to help the patient feel better and have a better quality of life, regardless of what other treatment is or is not pursued. Essentially, any treatment not directly targeting the actual cancer is palliative care; that includes pain relief, psychological and emotional support, attention to your gastrointestinal health, and more. Palliative care can be offered together with treatments like surgery, chemotherapy, radiation, and genetically targeted medicine.

Getting palliative care from the very beginning of your treatment may not only give you a better quality of life, but also buy you more time on this earth with the people you love. From 2006 to 2009, physicians studied “early palliative care” – palliative care offered within the first three weeks of diagnosis – in patients with metastatic non-small-cell lung cancer at Massachusetts General Hospital in Boston. They found that lung cancer patients who received palliative care throughout their treatment, beginning within the first couple of months after diagnosis, not only had a better quality of life, but also lived longer. Even though patients in the palliative care group were less likely to choose aggressive end-of-life treatment, their median survival time after diagnosis was 11.6 months, as opposed to 8.9 months for the standard-care-only group. You can read the whole study here: http://www.nejm.org/doi/full/10.1056/NEJMoa1000678#t=abstract

In practice, Dr. Saraiya’s expertise in palliative care meant that every time I saw him, he not only looked at my CT scans, listened to my breathing, and thought about what clinical trials might be available for me, but also patiently asked me simple questions about things that may not be the most glamorous topics in medicine, but meant as much for my day-to-day well-being as the size of the hazy areas in my lungs. Did I have pain? On a scale of one to ten, how severe was my pain? Was I having normal bowel movements? How was my sleep? Was I able to work on my graduate studies, and teach? How was I doing emotionally? He never failed to ask about my daughter and my partner. From time to time, he reminded me that even though I liked to be very matter-of-fact and brave, it was all right to be upset, even to cry. Expressing my feelings might even help me sleep better.

Together, we fine-tuned my pain medications, making adjustments as we went along. I was nervous about compromising my alertness, but it turned out I didn’t actually need very much to take care of my pain. I was frustrated that I was so hoarse I had trouble speaking above a whisper; with Dr. Saraiya’s encouragement, I saw an otolaryngologist (that’s an ear-nose-throat doctor), who was able to determine that the cancer itself was not affecting my vocal cords, and adding an anti-reflux medication could relieve the irritation in my throat and help me talk normally again. Treating my pain and my hoarse voice had no impact on whether the cancer in my lungs grew or shrank; but those treatments made me much more able to function as a student, as a teacher, and as a parent.

If a doctor recommends “palliative care,” please don’t be scared! It doesn’t mean your doctor is giving up on you. It means he or she wants to help you feel as good as you can possibly feel, not only sometime down the road if you should decide to stop aggressive treatments, but also right now when you’re trying everything to beat back the cancer cells.

Note: Actually, if your doctor recommends palliative care, ask what your doctor means by that. If your doctor is board-certified in palliative care or refers you to someone who is, mentions the New England Journal of Medicine article, and/or explains that you can have palliative care concurrently with treatments aimed at stopping or slowing the cancer, then he or she probably means what I mean. It’s possible, though, that your doctor may not be educated about early or concurrent palliative care. So, be sure to ask questions.

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Celebrating a birthday and a great quality of life with Stage IV lung cancer

On my 43rd birthday I was getting a brain MRI and imagining I would be dead in 8 months. Today, I am 44.

The first time I met with my oncologist, he explained that with the right treatment, even people with stage IV lung cancer can sometimes have a great quality of life. I wasn’t sure what that meant. But in the past year I have:

  • Gotten legally married to my partner
  • Team-taught two college classes at a state prison, including the very first religion course our program has offered there
  • Been a witness at my older sister’s tiny Quaker wedding (I was one of only two guests!)
  • Vacationed at the Jersey Shore, and enjoyed watching my daughter and her cousins have a great time on the beach
  • Seen all kinds of old friends at an ACT UP reunion in New York 
  • Heard Beethoven’s Ninth Symphony at Tanglewood
  • Helped my younger sister pick out a wedding dress (it was a big year for engagements and weddings)
  • Completed three of my four qualifying exams for my PhD
  • Seen my first academic publication in print (a co-written chapter in Katie Day’s Faith on the Avenue, http://global.oup.com/academic/product/faith-on-the-avenue-9780199860029#.UtrREQh8Fyw)
  • Co-taught the youth Sunday School class at my church
  • Spent Thanksgiving in New Orleans with extended family on my father’s side
  • Seen my daughter sing in a school concert and swim in her very first swim meet.

When you are diagnosed with advanced lung cancer, it’s totally normal and understandable to feel that you don’t have anything to look forward to except grueling treatments, miserable side effects, and a painful, premature death. It’s totally normal and understandable to fear there might not be any point in prolonging the suffering with treatment if the cancer can’t be cured. However, even though my cancer still isn’t curable, intelligent treatment has bought me so many opportunities for rich, full, meaningful life. I am so grateful!

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Chemotherapy tips: Ask for warm hats!

Everyone knows that chemotherapy can cause your hair to fall out. Not every chemotherapy regimen causes hair loss, and not every regimen affects every patient the same way. Nevertheless, standard chemotherapy works by killing fast-growing cells indiscriminately. It doesn’t distinguish between hair follicles and cancer cells. Hence, hair loss. One always hopes to lose some cancer along with the hair.

I found that there was plenty of information about how to manage my appearance during and after hair loss: consider a short haircut before your hair starts falling out, consider having your head shaved once it starts falling out in earnest, go to a “Look Good… Feel Better” workshop (I did the haircut and the shave, but not “Look Good… Feel Better”). Medical insurance will often pay for a wig (I didn’t care for one – I thought the Dr. Evil look worked for me).

No one told me, though, how COLD I would feel with no hair! In the winter, I often found myself shivering. My head often felt cold at night. Feeling chilly often seemed to aggravate my queasiness.

Friends and family sent me many hats from far and wide. The hats that turned out to be the most useful, however, were not necessarily the cute adorable hats, but the warmest, most snuggly hats. They had to be soft as well as warm, since my shaved head couldn’t tolerate any itchy fibers. 100% acrylic knit caps were often the most comfortable. When my head was warm enough, I felt a little better all over.

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My Dr. Evil look.

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My favorite hat.

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Finding the right emotional support for lung cancer

When you have lung cancer, not every cancer support group will be helpful. Lung cancer is just so much deadlier, on average, than other common cancers like breast and prostate cancer, and tends to be diagnosed when it is so much more advanced. It also feels invisible. Everyone seems to know about breast cancer, but few know how common lung cancer is, or that even young people and nonsmokers can get it. That reality shapes your experience of it.

This is not to say that you won’t meet people with non-lung cancers with whom you have a lot in common and who really understand what you’re going through. They are out there. It’s very easy, though, when you have lung cancer, to feel out of place at a support group meeting that isn’t specifically designed for people with lung cancer and/or an advanced-stage diagnosis. No one going through cancer is having an easy time, but sometimes it can feel like the room is full of cheery survivors living beyond their illness, when you really want to talk about your fear of dying.

A social worker at Rutgers Cancer Institute of New Jersey mentioned to me that a couple of other women with children were coming for lung cancer treatments and were having a rough time. She helped us schedule a time to get together for coffee. We only met that one time, but I found it helpful. I am still in touch with one of them. (It gives me hope that we are both still alive!)

I sought out old friends that I thought might be particularly good company in such a frightening and uncertain time. Back in the 1990s, I was involved in AIDS activism in New York. I’d dropped out of touch with those friends, but had recently reconnected with a few. The experiences we had shared fighting AIDS together – learning about new and experimental drugs and fighting for more research and access, campaigning for better care for people with AIDS, and most of all working side by side with people who were facing this illness in their own bodies and treating them as authorities, not as victims – made those friends really great lung cancer companions. They offered things like places to stay, and rides home from New York when I was too weak to take the train. They also understood the mix of anger, fear, and scientific curiosity that had become my emotional reality.

Another person I needed and wanted to see was my childhood friend whose mother had died of cancer when she was eight, the age my daughter is now. We had remained close friends but had never talked much about her mother, who died before we met. Now I wanted her to tell me everything. What was it like when her mother was dying? What did people do that was helpful for her, and what did they do that was not helpful? What was it like growing up without her mother? This friend actually came all the way from California for a weekend. She filled our refrigerator with food, straightened up our kitchen cabinets, and did special fun things with my daughter. Meanwhile she let me sleep as much as I wanted, and only talked when I wanted to talk and had the energy for it.

Not everyone will understand what you are going through. But some people really will.

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Chemotherapy tips: alleviating nausea

Chemotherapy and nausea: they go together like a horse and carriage. You may not be able to escape nausea, but there are things you can do that should alleviate it to a certain extent.

I’m told that the drugs are not nearly as hard on the body as the drugs that were used for chemotherapy years ago. Also, after being treated with two different kinds of chemotherapy, I can say with confidence that not all chemo regimens necessarily cause nausea. Moreover, the anti-nausea drugs on the market are pretty effective. I’m sure what I experienced was much, much better than what chemotherapy patients went through a couple of decades ago. Still, it was no fun. My first chemotherapy cocktail packed quite a punch.

The impact was not immediate. Generally, a few days to a week after a chemotherapy infusion was when the nausea was worst. I could describe my worst nausea experience in detail, but I don’t think you want to know and I don’t feel like reliving it.

The strategies that worked for me were medication, acupuncture, diet, and rest, pretty much in that order.

  • Medication: Your doctors or nurses may have you prepare for chemotherapy by taking steroid medications for a couple of days. They may give you a dose of Zofran (ondansetron), an anti-nausea drug, just as you are beginning the infusion. Then, you should also have a standing supply of Zofran and Compazine (prochlorperazine) at home — be sure to get those prescriptions filled before your first chemotherapy treatment. What worked best for me was checking how often I could take Zofran and Compazine, and then taking both, around the clock, whether I felt nauseous or not. I took them on a staggered schedule, so that if the Zofran was starting to wear off, I still had a few good hours of Compazine in my system, and vice versa. When I didn’t do this, I regretted it. Chemo nurses confirmed that the best way to treat nausea is to try and stay ahead of it as much as possible, using Zofran and Compazine for prevention instead of relief.Some other prescription medications may help with nausea as well, such as certain anti-anxiety and migraine medications. These can be useful for particularly bad days when, say, you have anxiety AND nausea, or nausea AND a migraine – and you may be able to keep taking the Zofran and the Compazine at the same time. (Make sure your oncologist has an up-to-date list of every prescription and over-the-counter medicine you might take, and always double check with him or her about possible drug interactions.) When these medications and other strategies didn’t relieve my nausea, the chemo nurses suggested a drug called Emend (aprepipant), which I could take for three days beginning with the infusion day. It seemed to help. I found it comical that I was taking as many drugs for nausea as for cancer.
  • Acupuncture: My experience with acupuncture deserves a whole post of its own, which I will eventually write. Here, though, let me just say that I think it helped.
  • Diet: The nutritionist at the cancer center recommended small, frequent meals. She recommended trying to get as much protein as possible to go down and stay down; one trick that often worked for me was cutting up cooked chicken into tiny pieces, and mixing them into plain rice. A friend with culinary training recommended ginger, which turned out to be great advice for me: some ginger ale, ginger tea, or chewing on a little piece of candied ginger often helped settle my stomach. Cold foods were good, because the aromas weren’t as strong and so didn’t trigger my nausea quite as much; I became a fan of the ham sandwich. And sometimes just a small bowl of plain rice or a plain baked potato was all the dinner I wanted. I managed to keep team-teaching a college course during chemotherapy, which is another story, but the nights I was teaching I sucked on peppermints or other hard candies, which somehow kept my stomach a little calmer. I lived in fear of having to vomit while teaching, but managed to escape that.
  • Rest: Sometimes what worked was just crawling into bed, and hanging out there with no stimuli – no reading, no sounds, no smells, no motion. Think about feeling seasick, and then try to do the complete opposite of being on a moving boat. I think it was important for me to give in to the fatigue, and sleep all day when I felt like sleeping all day. The more tired and stressed I was, the more nauseous I would feel when I was out and around.

Unfortunately, on that triple-threat chemo cocktail, my stomach never really felt normal. Even with all the medications, acupuncture, diet strategies, and rest, there was a constant feeling of queasiness. I never liked to sit very long at a table where people were eating; after 20 or 30 minutes, I wanted to get away from the sight and smell of food. My strategies didn’t keep me from feeling nauseous, but they helped me manage it.

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Chemotherapy tips: Infusions are not so bad

While the total experience of chemotherapy – nausea, fatigue, hair loss – was rough, the actual days spent getting the infusions at the cancer center were not so bad. In a way, they were even pleasant.

I’m not saying I would choose to spend my summer vacation in an infusion center. However, under the circumstances of my illness, infusion days were positive experiences for me.

At RCINJ Hamilton, the small satellite center of Rutgers Cancer Institute of New Jersey where I had my first months of treatment, the infusion center is a surprisingly bright, warm place. Most of the reclining chairs in which patients sit for treatment face floor-to-ceiling windows, which look out onto a garden. Little touches, like a shelf of books for pleasure reading, make the space a little more homey than your typical hospital environment. There’s always a basket of handmade blankets and hats, and patients are invited to take one.

The nurses are kind, and do their best to make the difficult ordeal of cancer treatment as comfortable as it can be. Their most important job is to make sure you get the right amount of the right medication, and to watch for any immediate side effects or allergic reactions, but they also offer warm blankets, pillows, cold drinks, and a bag lunch. They are busy, but not too busy to check on patients and ask “Do you need anything?” You can ask them about your symptoms and side effects, and sometimes they think of things the doctors have overlooked that can help you feel better. A friend of mine who is a nurse and a cancer survivor says chemo nurses are the nicest nurses around, and I believe her.

An odd but helpful assortment of caregivers pass through the infusion center: volunteer reiki practitioners, therapy dogs and their handlers. On infusion days I also usually saw the research nurse, the social worker, and the nutritionist. Dr. Saraiya works in the same building, so sometimes he would stop over between patients to say hello.

Sometimes my partner or a friend came along, and we would sit and talk. I had some of my best visits with people I loved on chemo days. I usually brought some good books and my laptop. The cancer center has Wi-Fi, so I could do a little work or catch up on email. The chemo stations have televisions, but I never used them.

One note: The combination of drugs I received during my first round of chemotherapy – carboplatin, Taxol, and Avastin – made for a long day. The infusions started in the morning and went until late afternoon. Whatever your doctor tells you about how long an infusion will take, either add a couple of hours or ask a nurse. The doctor is thinking about how many minutes it takes to administer the full dose of each drug, and he or she is probably right about that. A nurse, however, will also think about the time it takes to get registered and settled, flush the port, give you fluids, administer supplemental medications to minimize the possibility of reactions, and get the right medications from the hospital pharmacy. This will give you a much more accurate sense of how long you’ll be at the infusion center.

Yes, chemotherapy as a whole was exhausting and uncomfortable. On infusion days, though, it wasn’t bad at all to sit back and let nice people take care of me.

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Chemotherapy tips: EMLA cream

The best advice I got about chemotherapy came from a cousin who is a breast cancer survivor. She said, “Ask for the EMLA cream.”

EMLA cream is a numbing cream that you can use for painless port access (see https://thrivingwithlungcancer.com/2014/01/11/what-its-like-to-have-a-port-inserted/ for more about ports). The active ingredients are lidocaine and prilocaine. You can dab some on top of your port about an hour before treatment, cover it with a dressing to hold the cream in place, and then when the nurse inserts the needle into your port you will hardly feel the needle, if at all.

You probably won’t hear about EMLA cream from your doctor, who will most likely be thinking about the supercharged chemotherapy drugs and their side effects, not the relatively minor pain of the needle in the port or the mild topical medication that can ease it. You are more likely to hear about EMLA cream from a nurse or another patient. However, when you ask your doctor to prescribe it, he or she should not hesitate. I think EMLA cream for port access is standard of care in pediatric medicine, but adults have to know to ask.

Ask for the prescription several days or a week before your first infusion. You will have to get it filled at the pharmacy.

When you put it on, the goal is not to rub it into the skin, but to let it rest on top of the skin. Don’t use an absorbent dressing like gauze, because an absorbent dressing will soak up the cream and less of it will be in contact with your skin. Some people use a Tegaderm dressing – a clear plastic dressing with Band-Aid-like sticky surfaces around the edges – to hold it in place. Some people cover it with plastic wrap, taped down with first-aid tape.

The chemotherapy nurses at Rutgers Cancer Institute of New Jersey Hamilton suggested a neat trick: placing a plastic cap from a medicine bottle, concave side down, over the cream, then taping the bottlecap down with first-aid tape. It sounds so weird: a bottlecap? As a medical device? It’s very clever and functional, though. If you stand still, the bottlecap actually sticks to the cream for a moment or so, and you have both hands free to unroll the tape and tape it down. The tape comes off the skin painlessly, unlike a Tegaderm dressing. Most of the nurses at Sloan-Kettering have been impressed with this RCINJ trick.

Things work differently for different people, but the EMLA cream works really well for me. When I use it, the needle going into the port is completely painless for me.

These days I’m often fine without the EMLA cream; the needle going into the port is really only a brief and minor pain, compared to everything else I’ve been through. However, when you are going through all the discomfort, fatigue, and emotional turmoil of chemotherapy, why not spare yourself the extra pain of a needle stick if you can?

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Three thoracic oncologists: my big city/small town treatment plan

Family members wanted me to get my treatment at Memorial Sloan-Kettering or the University of Pennsylvania, the most prestigious cancer centers within reach. Meanwhile, I really liked Biren Saraiya, the smart and compassionate thoracic oncologist closest to home. I also didn’t like the idea of riding the train or driving an hour or two for chemotherapy infusions, tests, and appointments with the doctor (it was going to work out to at least one trip a week). With my coughing and fatigue, and the potential for nausea, I wanted to conserve whatever energy I had, and not use it all up on travel.

Dr. Saraiya is not just any community oncologist. He is affiliated with what was then The Cancer Institute of New Jersey (now Rutgers Cancer Institute of New Jersey), a National Cancer Institute–designated comprehensive cancer center. Still, TCINJ/RCINJ is not the same kind of household word in cancer treatment as Sloan-Kettering or Penn.

We came up with what I still consider a brilliant plan. Dr. Saraiya, who takes a collaborative approach I consider essential in thoracic oncology, encouraged me to go ahead and meet with the oncologists at Sloan-Kettering and Penn. If they could offer me something he couldn’t, like a spot in a promising clinical trial, he wanted me to take advantage of that. However, if they recommended treating me with drugs he also had at his disposal, he would treat me in New Jersey. Then, at any point along the way when we needed to contemplate a change in my treatment plan, I would consult with the big-city oncologists again.

I was worried that this was too complicated, but it turned out that Jamie Chaft, my oncologist at Sloan-Kettering, and Roger Cohen, my oncologist at Penn, liked the plan, too. There was no reason, they said, for me to endure extra travel for infusions with the exact same drugs I could get fifteen minutes from home. They would be happy to see me again at the next turning point in my treatment.

Dr. Saraiya explained that my being a patient at multiple centers improved his access to the latest information and clinical trial updates as well. He could always call oncologists at other centers for information, but returning his call might not always be their top priority. If they shared a patient, though, they could share information much more rapidly.

At the time, I was just pleased to be able to drive down the road for chemo, and not to have to go to New York or Philadelphia. Now, I’m actually stunned by the brilliance of my oncologists’ collaboration: because I am an active patient at three different centers, I have access to more clinical trials. (You can’t just sign up to take any experimental treatment; you have to be under the care of doctors who are involved in the trial.) Dr. Saraiya treated me from January to August of 2013; in August, when I joined the clinical trial for crizotinib at Sloan-Kettering, Dr. Chaft became my lead oncologist.  If I ever need to go to the emergency room, though, I can still go right up the road, where Dr. Saraiya is right next door and has remained up-to-date on my illness and treatment.

The only thing is that I can’t assume they each know everything the others know. At every appointment, if I’ve seen one of the other oncologists, I try to repeat everything they said in my own words, to supplement the e-mails they’ve exchanged. I also keep a running list of questions for each doctor, and if they say they’ve asked or told each other something, I follow up.

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