BY GUEST BLOGGER | FEBRUARY 26, 2014
Since my diagnosis in 1994 of a rare, incurable condition--medullary thyroid carcinoma--I've searched for an effective treatment. After three neck operations and chemotherapy did little to check my cancer's spread, I entered a drug trial at Fletcher Allen Health Care in Vermont. The oncologist running the experiment was Dr. Steven Grunberg, who took me under his wing. Despite my aggressive disease, he reassured me with quiet confidence. We're going to help you stick around, he said.
Today, thanks to Dr. Grunberg and his staff, I'm still here. But Dr. Grunberg isn't. He died of lung cancer in September. It's a painful irony I'm still sorting through.
By the time I found Dr. Grunberg five years ago, my cancer had spread to my lungs. I was growing desperate. In my mid-40s, with many things yet to accomplish in life, I researched experimental treatments and exchanged information with other sufferers of my rare disease through the Thyroid Cancer Survivors' Association.
One day I clicked to the clinical trials page of the National Institutes of Health, and learned of a novel drug being tested against my specific condition. The drug, then called Zactima, is a tyrosine kinase inhibitor. Basically it works to block proteins that tell tumors to grow.
Vermont's Fletcher Allen Health Care was among the study sites. One weekday morning I drove three hours from my Clifton Park, N.Y., home to Burlington, Vt., to meet Dr. Grunberg and get the ball rolling. Though untested drugs can be risky, he quickly earned my trust. A thick-haired man who spoke in quiet intelligent bursts, he'd keep a close eye on me, monitoring my status through bloodwork and scans. He spoke frankly of possible side effects, which included skin and intestinal problems. There was another concern. Two-thirds of study participants were supplied with the drug--but one-third received a placebo. Neither doctor nor patient knew which one patients had. I could be left without a life preserver.
By my next appointment, three months later, my levels of calcitonin--a hormone stimulated by my cancer--crashed to 10,000 from over 100,000 before the trial. It was apparent I was among the lucky two-thirds of patients. The drug was working!
Dr. Grunberg wasn't one to show a lot of emotion with me, but he shared an enthusiastic smile when he told me the good news. I immediately called my wife to tell her, and drove back to New York that afternoon, my heart singing with hope for my future.
Over the next five years I visited Fletcher Allen every three months. I came to refill my prescription of once-a-day Zactima pills, undergo CT scans and bloodwork -- and to feel supported by Dr. Grunberg and his staff of nurses and researchers. I remember pricking my ears to catch every morsel of what Dr. Grunberg was saying. He was a steadfast presence, and when he examined my neck and chest for recurrence, I was in sure hands.
He was more than a doctor to me. As a theater buff, he took an active interest in my writing, and spoke to me of his daughter's creative pursuits. I emailed him several of my short stories, and he always took time to send me a complimentary email back. I considered him a friend.
The drug kept my condition at bay, and as a result of the trial was approved as Caprelsa by the Food and Drug Administration for use against my cancer. Today thousands of patients like me can now benefit from work by Dr. Grunberg and other study researchers.
The last time I saw Dr. Grunberg was this past spring. I noticed no difference in his manner toward me. He seemed healthy, energetic--his hair as thick and dark as ever. He gave zero hint he had cancer, let alone terminal cancer, even as he treated mine. He betrayed nothing. But when I visited Fletcher Allen again in summer I received the odd news he'd taken a leave. I asked for elaboration but the staff was oddly quiet. It wasn't until I visited again this fall when his staff told me Dr. Grunberg had died of lung cancer.
I was stunned. But he didn't seem sick, I insisted. He kept working right up until the end. That's when it hit me: he didn't want his patients to know their doctor was dying of the same condition they hoped to beat. Dr. Grunberg didn't want them to lose hope, even as his own situation grew hopeless. My sense of betrayal at not being told sooner melted away into gratitude. His silence was admirably selfless. The world--my world--is poorer without him.
When I revisit Fletcher Allen for my next appointment in January, I'll see another oncologist who has replaced Dr. Grunberg on the trial I'd entered. She's a smart, caring doctor, and I recognize signs of selflessness in her as well, because I now have a standard against which to measure people's worth. Because Dr. Grunberg gave me a new lease on life, even as his own lease expired.
How rare, what's the prognosis, why me, what did I do, what can be done and what are my odds or chances on recurrence and dying?
At least that was my reaction when I was told in 2007 that the tumor behind my right eye was adenoid cystic carcinoma; the more difficult part was the pronouncement by the oncologist that the cancer was incurable and fatal. "You will certainly die because of the cancer."
Wow, could it have been told in a gentler way, without the windows closed and dark curtains drawn all around?
After the surgeons and oncologist left, I took a half hour to myself and cried, uncontrollably. I needed that time to understand the magnitude of what had been said to me, and then I straightened up, took a deep breath, looked around and realized I was still alive and the cancer was just a disease like any other disease. All I had to do was find out more about the cancer and try to live life as best as possible.
The problem was gathering information about adenoid cystic carcinoma is that there's such scant information out there. Plus, what information is out there is sometimes so outdated and wrong.
For example, how many people are diagnosed each year with ACC, is it 1,200 or 1,500 or a lesser number? And what are the survival rates in terms of years? Different sites, different information. I wondered should I just pick my own numbers.
The other problem was finding an oncologist who had at least some experience with this type of cancer. The first one put it very bluntly, "30 years as an oncologist and you're my first ACC patient; I can't help you."
The second oncologist put it more mildly, "I know nothing about your cancer. I'm flying blind and learning as we go along. You probably know more about this cancer than I do."
My third and current oncologist hasn't said what he knows about this cancer, which I guess is good. During a visit, I did ask him if he's treating me like any other cancer patient, wondering if this cancer is different than other cancers.
It sure looks as though he's treating my cancer like any other cancer, with the standard six months between tests and check-ups.
I did pick five years as the starting number for survival rates; that sounded good but by 2012, a new tumor had been found pushing against the brain. It actually started growing in 2011 but it was missed, even with the MRI and contrast.
My oncologist gave me the bad news, there's nothing that can be done, surgery is out because the tumor had grown around a major blood vessel. If we tried surgery, I would die on the table. Oh, not good.
Chemotherapy has never been and was not an option with ACC because the cancer is so relentless.
It was almost as though the oncologist didn't have an answer; that he was at the end of the rope: and then, one last hope, radiation. But how much and how long, and would it be safe considering I had had radiation in the same general area in 2007; plus, this time there would be radiation to the brain. Thank God for Stanford.
Their recommendation, eight weeks of daily radiation and all will be good to go. Of course, with this cancer there is no good to go, ever.
On Jan. 2, news came that a growth had been found in the left lung; for now it's all observation and then a fine needle biopsy (I had that done for the eye in 2007, so no worries there).
What I've discovered in my cancer journey is that there is no ready-set information about adenoid cystic carcinoma. Yes, it is a rare cancer, and as such, there is little information out there on how to treat it and what to expect.
Also, there is little research being done leaving ACC patients to wonder why? Is it because this cancer affects so few? I know many ACC patients feel like we're the pariah, the black sheep of the family. I have noticed that ACC patients themselves have started their own websites for information on this cancer; only we understand what we're going through so it would stand to reason that we'd reach out to help each other.
We have several sites on Facebook, where we exchange information and often support each other as we fight this cancer; the sad part is so many new people are joining these sites and then there are the ones we say goodbye to...too often and too many. As for me, I am spending time with childhood cancer patients and helping raise funds for research.
For me, when we're talking about LIFE-SAVING medicine, the benefit will almost always outweigh the negative side effects. I don't mean the debilitating side effects, I mean the manageable ones: I've lost my hair twice, I've had black fingernails, lost toenails....blah, blah, blah... diarrhea or constipation? Fatigue, aches and pains? You know the drill. If the drug works and gives me the quality of life to enjoy being a wife and a mom, I'm in. And so we start down the new path.
Now, when cancer drugs say you might get mouth sores or a rash, they don't mean an annoying cold sore or an itchy hand like "normal" folks might complain about. They mean painful, fire-breathing mouth sores and a rash that makes you want to scratch your skin off. While I don't have the rash on this one, I am not exaggerating about the mouth sores. The sore is inside my mouth, but my bottom lip is so swollen it looks like I was punched in the face.
When I dropped Henry off at school this morning, Chris was paranoid the teacher would think he is an abusive husband. It is HUGE. I am talking with a lisp, and I can't even sip my morning coffee without dribbling all down my shirt. Good times!
Like most aspects of cancer, there's also a mental battle going on here. My pride tells me I can do anything I want to do – that cancer doesn't have a hold on me. So I am determined to keep taking a good drug, even if it means dealing with some annoying side effects.
But I can hear the words of my oncologist's nurse, reminding me I can easily land myself in the hospital if side effects get out of control. Or worse, have to discontinue the medicine for good.
There's a thin line separating "deal with it" from "call your doctor."
Whereas last week I thought I could power-through, today I cried mercy. This morning's count was eight mouth sores, which makes me not want to eat, drink or talk! Darn it. I called my doctor, who gave me a few days off meds to let my mouth clear up with the help of some prescription goodies. Hopefully next week I can try it again.
I'm going to enjoy my weekend, pouty lip and all. Since I refuse to be a hermit, I will likely encounter strangers who ask what happened. There's no way to quickly explain how breast cancer caused my fat lip, so I need to come up with a better story or else I'll end up telling my life story to the checker at the grocery store. Right now I have three good options.
1. My two-year old Henry threw a ball and hit me in the face.
2. I just started taking a kick-boxing class.
3. You should see the other guy!
What do you think? Any suggestions?
Cognitive Behavioral Training includes exercises to assist with memory and processing speed as well as recommendations for strategies to accommodate for changes in cognitive function. Exercise studies to date have included yoga, Tai Chi, Qigong, aerobic exercise and resistance training. More research needs to be conducted to support the widespread use of these interventions, but these early results are encouraging. Additional results will be presented at the upcoming 2014 International Cancer and Cognition Task Force (ICCTF) Cancer and Cognition Conference to be held in Seattle next February. The Task Force is comprised of oncologists, radiologists, nurses, basic scientists and other disciplines all dedicated to finding solutions to the problem of cancer-related cognitive changes.
One study is currently being conducted to learn more about factors that may predict many of the symptoms associated with breast cancer prior to, during and following chemotherapy (including cognitive changes). Women with breast cancer are being asked to complete a confidential online questionnaire. If you or someone you know are newly diagnosed and have not yet received chemotherapy, or if chemotherapy was completed two or more years ago, please consider helping us learn more about predictive factors by completing the study questionnaire.
BY SUZANNE LINDLEY | NOVEMBER 7, 2013
I have been writing each day this month, as many others have, to count my blessings and show gratitude for this borrowed time I so enjoy. It isn't just in November that I am thankful. I realize each and every day how fortunate I am to be living in spite of cancer. It has taken more support, knowledge, dedication, passion, research and ability than I can imagine to keep me here and I am grateful for every bit of it!
When I learned that today is International Day of Radiology, I felt that it fit right into my gratitude calendar. I wouldn't be here without the miracles that radiology provide or without and those who study and practice it. I'm thankful for the little magic beads (SIR-Spheres), Radiofrequency ablation, CyberKnife and external beam radiation that have given me more time and better quality of life. I'm grateful for the scans that determine next steps and the ability to have "the right scan at the right time."
"Last year saw more than 80 societies from around the world celebrate the first ever International Day of Radiology and this year more than 110 societies have joined the initiative, bringing even more momentum to this already fast-growing movement."
To learn more, just follow the link! internationaldayofradiology.com
It's a great day to recognize and celebrate!RELATED POSTS
BY GUEST BLOGGER | OCTOBER 23, 2013
At age 59, I was fit, healthy and happily retired. My husband Clint and I had just returned from a great trip to Churchill Manitoba, the land of polar bears and beluga whales.
I was pretty thin at the time, but I noticed that my stomach had been bloated. It was hard, not flabby, which I had heard could be a sign of ovarian cancer. I made myself a gynecologist appointment right away, but even an internal sonogram turned up nothing.
The next day I was relaxing at our swim club with my 3-year-old grandson, whom we had been raising since he was 3 weeks old. I started having horrific abdominal pains. They were persistent and scary. My husband immediately took me to the emergency room.
That night my world changed forever. An X-ray and a CT scan showed a large mass in my abdomen and lots of spots in my lungs. It took a biopsy the next day to confirm the diagnosis of primary cancer of the liver, hepatocellular carcinoma. My husband and I were devastated. Life as we knew it was over--so we thought. Thank God we were wrong.
It has been seven years since that awful day when I was diagnosed with terminal liver cancer. A lot of prayers, healing, medical treatment, undergoing radiation called Theraspheres, traveling to cancer centers around the nation, a status of NED (no evidence of disease), and yes, even a liver transplant have come in between.
At age 66, I have come full circle, back to fit, healthy and happily retired.
These days I'm trying to pay it forward by mentoring other newly diagnosed liver cancer patients through organizations like beatlivertumors.org, Imerman's Angels and University of Cincinnati liver transplant support group. I want my example to replace fear and desperation with hope and perseverance.
I have truly been blessed.
BY LINDSAY RAY | SEPTEMBER 30, 2013
Ahead of schedule, the Food and Drug Administration (FDA) approved Perjeta (pertuzumab) to treat patients with early-stage breast cancer prior to surgery (neoadjuvant) on Sept. 30. This comes on the heels of a unanimous vote from the Oncology Drugs Advisory Committee to recommend the drug for approval. Perjeta was approved just last year to treat patients with metastatic HER-2 positive breast cancer.
Perjeta is the first drug approved for the neodjuvant treatment of cancer and provides another treatment option for patients at high risk of a breast cancer recurrence, metastasis or of dying from the disease. Perjeta is still intended for HER-2 positive patients, but has now been extended to include those with inflammatory, locally advanced or early-stage breast cancer who are at high risk. Perjeta is to be used in combination with Herceptin (trastuzumab) and chemotherapy, and depending on the combination used, chemotherapy can be used after surgery as well. Herceptin, however, should be continued after surgery to complete a year of treatment.
Perjeta was approved under the FDA's accelerated approval program, which provides patients access to drugs for serious conditions while further ongoing trials are conducted. The drug was approved based on a phase 2 trial in which 417 participants were randomly assigned to receive one of four treatment combinations prior to surgery (given every three weeks for four cycles of treatment): Herceptin and docetaxel; Perjeta, Herceptin and docetaxel; Perjeta and Herceptin; or Perjeta and docetaxel. Thirty-nine percent of those receiving the Perjeta, Herceptin and docetaxel combination achieved a complete pathologic response, which means there was no detectable invasive cancer in the breast or lymph nodes. Only about 21 percent of those who received Herceptin plus docetaxel achieved a complete pathologic response. Perjeta is also the first drug approved based on a pathologic complete response instead of traditional endpoints, such as survival data and progression-free survival.
A large, phase 3 trial, called APHINITY, is ongoing to confirm these results and also examine the long-term effects of Perjeta. Approximately 4,800 participants with HER-2 positive breast cancer who have received prior breast cancer surgery and are at high risk for cancer recurrence are enrolled. Results from this trial are expected in 2016. Perjeta is still being further explored for treating breast cancer as well as other HER-2 positive cancers, colorectal and gastric cancers.
When asked for a comment, Lisa Carey, medical director of the UNC Breast Center in Chapel Hill, N.C., said that it is important that the FDA is recognizing the need for more flexible and nimble approaches. "This is a good one since the neoadjuvant trial was well designed and completed," she says. "The adjuvant trials, which will define this in terms of more clinically meaningful results, are finished collecting patients and just need to mature. So this is a good proof-of-principle for using the neoadjuvant approach as an intermediate."
However, some questions still need to be answered. Carey explains: "The questions center on the use of such a short duration of Perjeta since the augmentation of pathologic complete response with Herceptin was associated with improved outcome but with a year of therapy, not weeks. Also how can the heterogeneity of HER2+ disease impact response to single or dual HER2-targeting, and how can we get smarter since this is now an extremely expensive approach that needs a better selection strategy."
As Carey noted,the Perjeta-Herceptin combination will also carry a hefty price tag--it is expected to cost between $27,000-$49,000 for 9-18 weeks of therapy. However, there are patient assistance programs in place that might be able to help off-set the price.
Common side effects for participants receiving the Perjeta-Herceptin-docetaxel combination included hair loss, a decrease in white blood cells (neutropenia) and nausea. Other side effects included allergic reactions, hypersensitivity and decreased cardiac function.
About six months ago, I received a call at my house from a family friend who was in distress. As a community oncologist, it is not uncommon for me to receive cancer crisis calls from family, friends or someone I may not even know. This call concerned the grandfather, whom I will call John, of a friend of one of my boys; the caller was the boy's mother, whom I will call Donna, daughter of the patient.
I had actually known about the situation for some time. Donna and I had briefly talked about it at little league games or at places where parents run into each other. John had been battling liver cancer for over four years. He was being treated at a large, well-known cancer hospital and the doctors there had done an excellent job of keeping the cancer at bay. Over the years, parts of his liver had been surgically removed, others boiled with hot probes and many blood vessels had been choked off to deprive the cancer of oxygen. When these local measures no longer worked, he took chemotherapy and like a good soldier, even enrolled in clinical trials testing experimental ways to treat the cancer.
But John felt that the oncologist taking care of him now was mainly interested in enrolling him in study after study and that none of the chemotherapy or research treatments had done any good. The doctor did not answer his questions, talk to him about prognosis, or treat his ever-increasing pain. By the time his daughter reached out to me, the cancer was growing widespread in his liver and lungs, and John was told to enroll in a hospice program close to home. The center could not do anything more for him. They made him an appointment to return in three months, if he was still alive. Needless to say, the patient and his family were distraught.
Although I did not relish caring for a friend's dying parent, I agreed to see John in my office. I was thinking that I could at least make him feel cared for and supervise his end-of-life care. As John walked into my office and forced a smile, he appeared to be a man in the middle of the ocean holding onto a sinking boat. His wife and children filed in somberly. We started out by getting acquainted, talking about his life a bit and what he wanted most for the remainder of it; we even laughed some. John said he accepted that he was dying, that he could barely get out of bed and had no appetite, but that he just wanted to feel better if possible. He wanted to be hungry again, eat his favorite pasta meal, and be able to move without severe pain.
I first addressed his pain by prescribing a steady, more potent pain regimen. I had to assure him that taking narcotics would not make him an addict, something he feared and which greatly frustrated his family. Next, I was concerned about his shortness of breath, so I ordered a lung scan which revealed blood clots in his lungs (pulmonary emboli) in addition to the tumor deposits; I prescribed an injectable blood thinner, called enoxaparin (Lovenox). He seemed to immediately improved with these changes but he soon developed severe pain in his hip and I diagnosed new bone metastases. I convinced him to undergo a course of radiation therapy (he did not think it was worth the trouble), which fortunately did greatly diminished his pain.
I was relieved that John's pain and breathing improved though his appetite still remained poor. I was not sure how much time he had left. Without us noticing, the days led to weeks which somehow led to months as John's condition gradually improved. He was getting out of bed easily now, going shopping with his wife, even mowing the lawn again. And he was finally eating more; his gaunt appearance began to fill out toward normal. His mood was much less depressed. It was as if the grip of death had given him a respite and left his body.
It took us all by surprise. The family asked, "So, what's going on with his cancer?" I said frankly that I did not know but that we weren't treating it so I couldn't conceive that it was being controlled. But it is not usually the case that a cancer progresses and a patient's condition improves so I was indeed perplexed. Furthermore, I did drawn a tumor marker of liver cancer, called AFP, measurable from the blood. When I first met John it was over 7,000 (normal less than 5). Now two months later, it had inexplicably dropped to 300. I told John and his family that I needed confirmation and another measurement before I believed that huge drop. Sure enough, two weeks later the AFP was 220. In order to see what was happening with the cancer, and to answer their question more accurately, I sent John for a CAT scan. The result was also inexplicable but wonderful: the tumors in his liver and lungs had stopped growing and were actually a little smaller! I was incredulous.
"How could John's cancer be shrinking?" I asked myself this question over and over again as I tried to provide the family with some answers. Could it be the Lovenox? There have been no reports of cancer improving with this blood thinner, though there has been some talk of this possibility in the medical literature. Could it have been the radiation therapy? There have been rare reports of radiation therapy to a focal cancer deposit leading to regression of metastatic cancer in the rest of the body due to activation of an immune response (called an "abscopal effect"). Could it be John's change in attitude, from depression and hopelessness to a feeling of lightness and the joy of living? There certainly has been alot written about a person's "attitude" toward cancer and how important it is to maintain hope. Could it be my role as a trusted physician? I only thought of this after Donna gave me this passage from the book Anatomy Of An Illness As Perceived By The Patient (1979, W.W. Norton & Company) by Norman Cousins:
A prominent physician recalled of his physician father: "The instant he entered the sick room, the patient felt better. The art of healing seemed to surround his physical body like an aura; it was often not his treatment but his presence that cured." Francis Peabody's famous remark, "The secret of caring for the patient is in caring for the patient," is another way of stating that there is a miraculous moment when the very presence of the doctor is the most effective part of the treatment."
I was certainly flattered by that sentiment but could not claim the credit here. No, John's improvement is strictly in the realm of the unexplainable. Regardless, we all shared a joyous moment when the results came in. In contrast, John experienced a different reception when he returned three months later to his original hospital, to which he had considerable loyalty. John and his family were looking forward to seeing the pleased look on his doctor's face but were rendered speechless when he did not comment at all on John's miraculous improvement. "He told me their CAT scans were much better and that I should go for more chemotherapy there." "
Chemotherapy! Can you believe that?" John released a rare expletive as he relayed the encounter. We were all disappointed and surprised by this response.
It is now six months since I first met John, and he continues to thrive. I do not know how much longer he has or why he is enjoying more time than expected. But when you are dealing with cancer and the unexplainable happens, in a good way, I say go with it.
It can get really depressing when you work in cancer. And then you get an email that has a video with it, and you get re-energized that we are making progress and that there are good people working on what seem like impossible ideas that may work.
That's what happened when I opened the TEDxSeattle talk by Jim Olson (Project Violet), a pediatric oncologist at the Hutch in Seattle who has decided he wants to find a way to cure children's brain cancer before he retires. (To watch it, scroll down to the bottom of the page and click on the YouTube video.)
But it's more than his vision that grabbed me with his talk. It's his passion and optimism that it can be done. Of course, the only thing standing in the way is money.
As most of you know who have been around cancer for any length of time, researchers have to get grants to be able to set up labs, hire help and the myriad other requirements to research cancer. Sometimes they spend more of the year begging for money than they do researching. They are also restricted by the unwritten law that their idea can't be too far out of the box or different.
Susan Love, MD, the well-known breast surgeon, addressed this point last weekend when she spoke at the first National Women Survivor's Conference in Nashville. She explained how complicated it can be to get grant funding, so researchers have learned to research things that are already being researched with maybe a tweak or two. Anyone with a really far out idea (that may have efficacy) won't get funds. To try and get researchers away from using mice and rats, Love created the Army of Women where volunteers wh can sign up to take part in clinical trials. But more on that later.
Some may consider Dr. Olson's ideas far out. I don't know if people scoffed at his idea that the toxins from scorpion poison could be the basis for a kind of tumor paint that would light up cancer cells. Well, maybe. But the point is, he has an idea that mother nature may be a great source of some solutions in cancer. And I am guessing he didn't want to wait around years for a couple hundred thousand dollars when he needed a couple of million to accomplish his goal. So he did something different, he started a nonprofit and has gone on the road telling people about his ideas and asking them to give. They can even name a drug.
His biggest boost has come in the form of the TEDxSeattle video he did earlier this year, the one I saw, where he shows the scorpion technology to identify a brain tumor in a way that it shows up differently than healthy tissue to surgeons. Seems that when surgeons get to the margin of a tumor, it's really hard to tell where the cancer stops and the good grey matter begins. This means pieces of cancer can be left in a child's head to begin growing again.
Olson's creation, which he calls tumor paint, shows the surgeon where the tumor cells are to help get it all while keeping the healthy cells undisturbed. It's in the video and it's fascinating.
Think about the applications to other surgeries. Huge. But the tumor paint is only one of his ideas. With his team of young inspired researchers he is looking at other nature-inspired solutions. And to finance his research and to honor one of his young patients, Olson created projectviolet.org a nonprofit where we can go to donate and support specific drug development. There is a spider project in the works, as well as petunia, potato and horseshoe crab. It's based on the idea of "Citizen Science," which says that all of us can participate in the exciting breakthroughs that drug discovery offers. Science belongs to everyone.
At Project Violet you will also meet the real Violet, the little girl who moved Olson to walk around to collect himself before meeting her and her parents, knowing that her brainstem glioma was incurable.