BY KATHY LATOUR | APRIL 18, 2014
This week the American Society of Clinical Oncology (ASCO) issued three evidence-based guidelines for cancer survivorship. You can read them here. ASCO offers oncologists and others in the healthcare community recommendations on a vast array of issues. With these three added, there are now four guidelines concerning survivorship. The three areas they address in the new guidelines are neuropathy, fatigue and depression, and anxiety. Not that I want to sound ungrateful, but it's about time.
First, in regard to peripheral neuropathy. In the summer issue of CURE you will read my article on peripheral neuropathy and how sufferers are faced with a very debilitating long-term and late effect for which there is little effective treatment. In fact, the press release about the guidelines issued by ASCO says they "provide evidence-based recommendations for prevention and treatment of chemotherapy-based peripheral neuropathy."
Then, in the guidelines themselves, they say that due to "lack of high-quality, consistent evidence, no established agents are recommended for the prevention of CIPN in people with cancer undergoing treatment with neurotoxic agents." This means that they don't have any ways to stop CPIN from occurring – yet. There are some new ideas in the works but nothing has been approved.
For treatment, the guidelines say clinicians can offer Cymbalta (duloxetine), and then gives a list of other options that have shown some efficacy.
Ultimately, there is nothing new here. But what is new is that it is here. Getting ASCO to post guidelines, even if they don't give us anything helpful is a start in recognizing that survivors have a number of issues that impact our lives significantly, or as one professional says, we don't have cancer anymore but cancer has us.
In regard to fatigue, the second guideline they add, the recommendation is that survivors be screened for fatigue from point of diagnosis onward.
In addition, the guideline says that "given the multiple factors contributing to post-treatment fatigue, interventions should be tailored to each patient's specific needs. In particular, a number of nonpharmacologic treatment approaches have demonstrated efficacy in cancer survivors."
Read "exercise" there. The hopeful part of this guideline is that it will lead our cancer professionals to recognize that they need to know where to refer us to get help with fatigue. I am a major proponent of rehabilitation services for many of these needs as the rehab folks understand not only the physical but also the emotional changes that may need rehab.
For the third and final new guideline, Screening, Assessment, and Care of Anxiety and Depressive Symptoms in Adults With Cancer, the ASCO pros adapted a Pan-Canadian Practice Guideline. In general the guideline says cancer patients "be evaluated for symptoms of depression and anxiety at periodic times across the trajectory of care." Do we see a pattern here?
This evaluation should use good measures and different approaches depending on the levels of symptoms. It concludes with an overview of what happens when there is failure to identify and treat anxiety and depression. We feel rotten and have a much-reduced quality of life.
The options for care given with these guidelines are really thin, and my recommendation is that they use the Oncology Nursing Society Putting Evidence into Practice which seems to be ahead of ASCO in recommending interventions for each one of these.
Once again, the nurses beat the docs to the punch.
Overall these guidelines are a disappointment. They don't give us anything new and the disclaimer that runs with each one is double the length of the guideline. Come on ASCO, you can do better than this. We now have four, count them, four survivorship guidelines. The first one posted by ASCO in 2013 had to do with fertility and said oncologists should talk with patients of childbearing age about the impact of treatment and their options for preserving fertility.
A study late in the year says oncologists are not doing a great job of that.
Cancer survivors are growing in numbers and we would like to think that someone is paying attention to our quality of life and not just patting themselves on the back for keeping us alive. Fatigue, depression, anxiety, neuropathy and many other issues may follow us after treatment ends. It's time we put some energy into researching them and coming up with some real answers.RELATED POSTS
BY GUEST BLOGGER | APRIL 17, 2014
When I hear women in the locker room at the gym curse the day because of a broken nail or a parking ticket, I can't help but get sassy with them. "Let me get this straight," I might say, pointing at my chest where two perfectly formed breasts used to reside pre-double mastectomy. "I'm flat as a pancake, have chemo brain until noon, and my eye brows never grew back, but do you hear me complaining?"
"We don't know how you do it," they sigh, shaking their heads with a mixture of pity and ...well, pity. This is what kills me. That "civilians" – that's what my friend and fellow survivor, Noreen, calls the uninitiated – act like cancer survivors have a real choice in the matter. Like choosing the paint color for our car from the factory or selecting a new dish washer from Sears.
"Chutzpah!" I declare with a winning smile, "That's how I do it; chutzpah and good medicine keep me putting one foot in front of the other."
In spring 2004, I didn't think I had many steps left after a routine mammogram failed to detect a tumor the size of a golf ball. Thankfully, I noticed a change to the areola of my right breast a month later and quickly called my PCP. A biopsy confirmed my darkest fear but the prognosis after surgery was far worse.
Cancer had spread to my lymph nodes. That, coupled with the size of the tumor and my relatively young age – I had just turned 45 - lead my surgeon to determine that I had very aggressive breast cancer. Very apologetic, he predicted I had a 75 percent chance of dying within three years. I could feel the cancer goblins dancing on my grave within three minutes.
But then a funny thing happened on my way to the afterlife. I met my oncologist the following week for the first time, and she gave me a healthy dose of the medicine I needed most: hope. "I'm so excited to work with you," she said beaming, "with all the amazing treatments today for advanced estrogen receptor-positive breast cancer, you have a 25 percent chance or better of beating it."
With a "how do you do?" like that, I became 100 percent convinced that the odds were in my favor. I kicked kicking the bucket, truly excited for all the summer adventures that lay ahead with my husband and our two young daughters. Whether camping on the lake or camping out at the infusion center ingesting "cocktails" so exotic my hair fell out, my oncologist helped me see that it wasn't enough to merely accept treatment.
I wasn't a criminal resigned to serving my sentence. Quite the opposite, I saw myself as an eager and enterprising foreman, overseeing the biggest restoration project in my life, way bigger than remodeling our kitchen a few years prior. Cancer treatment or kitchen remodeling, if you don't have the right tools and know how to use them, chances are slim you'll get the results you wanted.
Survival is still an adventure all these years later, one that wouldn't be possible without continued pharmaceutical research and the dedication and encouragement of my oncology team. After an initial five-year course of the oral aromatase inhibitor, Letrozole, following chemotherapy and radiation, I recently completed an additional five years in a double-blind trial to determine if extended use of Letrozole gives added benefit. I won't find out the results until 2015 but, regardless, being part of such an important study in the fight against breast cancer recurrence has been an easy pill to swallow.
Carolyn Choate was diagnosed with stage 3B invasive lobular carcinoma more than 10 years ago. She is a long-time TV producer and on-air talent for WYCN in New Hampshire. A dedicated "coach potato" before cancer, Carolyn has since participated in the SheROX triathlon, is an avid kayaker with her daughters, and most recently rode her bike solo from Boston to Montreal to raise money for Rotary International's "End Polio Now" campaign. She is currently working on a memoir, Flat as a Pancake & Loving It.RELATED POSTS
BY DEBU TRIPATHY | APRIL 10, 2014
Two studies announced at this year's annual meeting of the American Association for Clinical Research are targeting unique molecular features that drive breast cancer. One study is testing the drug palbociclib, which targets an abnormality in the cancer cell cycle. The drug is being tested in hormone-positive breast cancer in combination with the aromatase inhibitor, Femara (letrozone). The combination significantly delays the time it takes for the cancer to continue growing. At the current time, it's not showing a survival advantage, but a phase 3 trial in progress may be the deciding factor for the drug's approval.
Another study is looking at a drug called neratinib, specifically in HER2-positive breast cancers. It's part of the I-SPY2 study, which is testing multiple new therapies before surgery, as neoadjuvant therapy. The results show that neratinib can result in complete disappearance of the tumor. This may represent a new drug for patients with HER2-positive breast cancer, including patients who have progressed on other HER2-targeted therapies.
Debu Tripathy is an oncologist and editor-in-chief of CURE. He is the co-leader of the Women's Cancer Program at Norris Comprehensive Cancer Center and Professor of Medicine at the Keck School of Medicine at the University of Southern California.RELATED POSTS
BY DEBU TRIPATHY | APRIL 9, 2014
One of the areas that has progressed quite a bit recently is that of tumor immunotherapy. At this year's annual meeting of the American Association for Clinical Research, several papers have been presented in this area.
One of the most exciting is advances in lung cancer, which has been a traditionally hard to treat cancer. Recently there have been newer targeted therapies that work against growth factor receptors that show benefit, particularly in non-smokers. And now we're seeing advances in immunotherapy.
Now, a fundamental breakthrough in immunology has come with understanding the controls of the immune cells that allows us augment the natural immune response that white cells have against tumors.
One of the proteins blocked is the PD-1 receptor and PD-1 ligand. These proteins are important because the cancer cells can use them to block the immune system from attacking the cancer. There are several drugs being tested that inhibit this blockade, the so-called immune checkpoint, in trials not only for lung cancer, but also melanoma and other solid tumors.
One of the potential benefits of one of these drugs called MK-3475 is that it may work in people who have a history of smoking, people who have traditionally not benefited from these targeted therapies.
There is also some new information that we may be able to identify patients who have the best chance of responding to these drugs. There will be a more formal comparison and information on how the drug works in smokers coming hopefully very soon. We expect to hear those results at the annual ASCO meeting this summer.
Debu Tripathy is an oncologist and editor-in-chief of CURE. He is the co-leader of the Women's Cancer Program at Norris Comprehensive Cancer Center and Professor of Medicine at the Keck School of Medicine at the University of Southern California.RELATED POSTS
BY GUEST BLOGGER | MARCH 26, 2014
At age 26, I was on my own, self-sufficient, secure and independent. I was already a few years into building my career as an adolescent therapist; a job that well suited me. I had my own apartment, and was about to move in with my boyfriend of several years. I took care of myself physically and emotionally. Life was pretty perfect, until the routine trip to the gynecologist that wound up saving my life.
When you hear the words, "you have cancer," there is truly no way to be prepared to absorb all that comes with it. My now unstable life became filled with terms like prognosis, oncologist, surgery, treatment and chemo. My doctors overwhelmed me with choices about what course of action to take. Suddenly, my secure sense of self became unraveled and presented me with a new identity – cancer patient. My oncologists' (who are wonderful) main goal was to rid me of cancer as quickly as possible. The recommended course of action when diagnosed with ovarian cancer is to have a complete hysterectomy.
Being only 26, the idea of parenthood wasn't even on my radar yet. But suddenly I felt forced to think about my fertility and my options. I was then hit with a double whammy: the idea that my cancer might render me infertile. I stressed to my doctors that while clearly the primary focus is to rid myself of cancer; I wanted them to make every attempt at preserving my fertility.
Over the course of seven months, I endured three surgeries and six rounds of chemotherapy. The treatment took my hair, put my body in menopause, and left me feeling twice my age. Unfortunately, the doctors weren't able to save my ovaries. I recovered and slowly acclimated to my new normal – survivor.
As I moved further away from my date of diagnosis, I became more accepting of my life as a survivor and it became less scary to invest in the idea of leading a longer, healthy life. My then boyfriend and I were married in 2005, and after several years were comfortable exploring the idea of having a family. I had come to terms with the loss of my fertility and began exploring my options to become a parent. I reached out to my oncologist and my supports in the cancer community about surrogacy and adoption.
I feared that with adoption, I might be discriminated against due to my cancer history and therefore it felt safer to me to explore the world of surrogacy. I also liked the idea that though our child might not be genetically mine; they could still be connected to my husband. As we researched, it quickly became apparent that there was a lack of information about surrogacy.
We met with a few agencies and decided on Circle Surrogacy in guiding us through this process. We signed our contract with them and moved on to the matching process. Within four months of meeting our surrogate, we were expecting our son. The entire experience felt "right," as I believe this is the way we were intended to become a family. Our surrogate is truly an amazing woman, who we felt connected to from the start. Going into the experience, I had some anxiety about feeling envious or jealousy toward our surrogate as she was able to bring our child into this world; something that I couldn't do. I remember feeling surprised that I didn't feel this way toward her at all. As we were awaiting the arrival of our son, I felt humbled and grateful that she was doing this for us.
The day our son was born was truly the most amazing day of my life. It was as if all the struggle, loss and upset caused by cancer had been undone, or perhaps more so, solidified the reason for the journey.
As I reflected on the experience, I remained troubled by the idea that there was little information in the cancer community about surrogacy. I began exploring ways to get information about this amazing way to become a parent after cancer to survivors. I am fortunate to have made this a career goal and work now as an outreach coordinator to educate others about surrogacy.
Though being a cancer survivor is membership to a club I never wanted; I wouldn't say that cancer was the worst thing that happened to me. How could that be when it has brought so much to my life both personally and professionally?
Jen Rachman is a social worker from New York City. She is a 10-year ovarian cancer survivor having been diagnosed at age 26 and a parent through surrogacy. She is currently working as an outreach coordinator for Circle Surrogacy to educate survivors about this family building option after cancer.RELATED POSTS
BY GUEST BLOGGER | MARCH 25, 2014
Life has changed a lot for me since nominating my nurse, Tish Mullen, who became a finalist in the first Extraordinary Healer Award contest in 2007. From my essay, "My Own Fairy Godmother Nurse":
"...I was extremely sick and in the hospital for most of the second semester of my senior year of high school. Well, when prom came around, it was really touch-and-go whether I would be in the hospital or not. Because of Tish, I was not in the hospital, got to attend prom, stayed out late, and all of this without my ever-present I.V. backpack. This was quite a feat!
She came over right before I got ready and removed my I.V. and I.V. backpack as part of getting ready (sort of a substitute for doing my hair since there was none). I put on my flowing royal blue gown and was whisked off as a princess for the evening--putting the fact that I was going into an intense life-threatening stem cell transplant in a week in the back of my mind.
At about 4 in the morning, I arrived home from the after-festivities and called Tish, as I had been instructed to do. She came over and safely put the I.V. back in like it had never left.
This is a small example of the type of person Tish is--caring, selfless, and trying to help pediatric oncology patients with all of her resources..."
After the Extraordinary Healer contest, Tish did another overly generous thing for me. She transformed my mother's wedding dress into a custom dress for my wedding! This year, I am celebrating my six-year anniversary with Gabe Lozano, the man I took as my date to that awards ceremony in 2007.
I am also very excited to celebrate 10 years this May with no evidence of cancer. I'm still deciding how I may want to honor this milestone.
Last year, I completed a dual master's program in art therapy and counseling. I achieved my goal of becoming an art therapist, inspired by a woman who was my therapist during my cancer treatment. It was a long road as I had been in treatment on and off for so many years.
Recently, I began working in a residential facility for children and teens dealing with emotional and behavioral issues. The children inspire me so much every day, and I feel blessed to be there.
Combining my love for art therapy with helping others with cancer has led me to the opportunity of facilitating workshops for adults and children with cancer using art as the means of expression. I'm now helping plan a local young adult conference for people living with cancer this summer and will lead a session on art therapy.
I have continued to do inspirational speaking, which has taken me around the country and even to Europe. I have enjoyed meeting amazing people through all these experiences.
Although I still deal with many long-term side effects, I make the most of it, as I'd rather deal with them than the alternative. I'm even challenging myself to train with a program called Cancer to 5K to see how much I can push my body. It seems that if I'm busy with life, then I don't have much time to think about the lingering side effects.
As I reflect back on my experiences with CURE's Extraordinary Healer contest, getting the chance to honor such an amazing nurse who did so much for me has definitely been a highlight in my journey. I continue to see Tish occasionally, and she continues making the lives of children with cancer better and brighter. I hope to be more like her!
Rachel Lozano is an art therapist, artist and inspirational speaker. She is a three-time young adult survivor of Askin's tumor. Statistically, she had a 0 percent chance of survival the third time, but in May will celebrate 10 years of no sign of cancer. Feel free to contact her through her Facebook page, Rachel Lozano: Inspirational Speaker.
Editor's note: Nominate your nurse for CURE's 2014 Extraordinary Healer Award at curemagazine.com/healeraward. Deadline March 28, 2014.RELATED POSTS
BY ELIZABETH WHITTINGTON | MARCH 21, 2014
One of the stories out of the ASCO Genitourinary Cancers Symposium earlier this year was that patients with metastatic kidney cancer may benefit from surgery in addition to biological treatments.
Before targeted therapies, patients with metastatic renal cell carcinoma were treated with surgery and interferon. With the advent of targeted therapy, it's unknown whether surgery is still beneficial. The retrospective study examined patients treated with a targeted agent--most patients were treated with Sutent (sunitinib) or Nexavar (sorafenib). Because the study was not a randomized prospective study, patients chose whether to proceed with surgery, and about 60 percent elected to undergo a nephrectomy (surgical removal of the kidney). You can read the abstract here.
Patients who had surgery lived longer than patients who did not have surgery (20.6 months versus 9.5 months). However, because those who elected to have surgery were in better health, researchers had to adjust the data, which ultimately came out to a 40 percent survival benefit. This effect was apparent in patients who had longer life expectancy and good prognostic factors. Researchers noted that patients who had poor prognostic factors, such as low blood counts, did not appear to benefit from surgery.
Daniel Yick Chin Heng, presenting author of the study, said these results confirm a previous, but much smaller, study. "Cytoreductive nephrectomy may extend overall survival; however, not all patients should have it," he said. "Patients with a longer estimated survival can potentially stand to gain a lot more benefit from cytoreductive nephrectomy." Two phase 3 randomized studies will, hopefully, answer more questions in which patients would benefit from surgery.RELATED POSTS
BY KATHY LATOUR | MARCH 21, 2014
We now have another clue about why we are so tired during chemotherapy and for months afterward.
It's one of those "Dem Bones" issues. You know the old spiritual that says, "Toe bone connected to the foot bone, foot bone connected to the heel bone, heel bone connected to the ankle bone," and so on.
In this case, according to researchers at the Winship Cancer Institute at Emory University in Atlanta, Georgia, chemotherapy is connected to an epigenetic imprint in the DNA of breast cancer patients' blood and the imprint is connected to inflammation and inflammation is connected to fatigue.
The changes to the DNA are very complex, which I don't want to explain to you when I don't understand them. Suffice it to say that they are finding that these changes are in the DNA at six months post chemotherapy.
If you want to read the details you can find them in the journal Brain, Behavior, and Immunity. More researchers than ever are focusing on inflammation and its relationship to cancer. Ironically, this study appeared just when we were preparing the spring issue to go to press, and in it you will find a feature on inflammation as it relates to cancer and recurrence of cancer.
In the article we add another line to Dem Bones as we look at the impact of sress on inflammation. Stress does lots of nasty stuff in the body, including, perhaps, suppressing the immune system and encouraging inflammation.
So what does this all mean for those who cannot get off the couch because they are so fatigued, which, in turn, causes stress because we need to get off the couch to live. Well, it's time to take some control and find ways to fit exercise into our lives. I know, I know, you are tired of hearing it, but you will have to plug your ears if you want it to go away.
I am not talking about getting up and doing a 5 k. Just lie there and do leg lifts or get small weights and use those to get your oxygen level up. Get your blood pumping, which you can also do by raising and lowering your arms. Yoga has evidence that it helps. Exercise and other stress reducing activities also impact your chances of recurrence.
There are also inflammation reducing foods, spices and movement just as there are those foods that increase inflammation.
No one thing is the answer to fatigue, but even small changes show our body we love it. So to wrap up . . .
Chemotherapy is connected to epigenetic changes in the DNA and they are connected to inflammation and it is connected to fatigue/ conversely less stress is connected to less inflammation and exercise is connected to less inflammation because it reduces stress.
No one said it would be easy.RELATED POSTS
BY KATHY LATOUR | MARCH 20, 2014
OK, I admit that I like a reality show called The Little Couple. I happened on it one night last year and was struck by how authentic Bill Klein and Jen Arnold came across. The premise of the show is to take part in the lives of a husband, Bill Klein, and wife, Jen Arnold, MD, as they marry, build their dream home in Houston and grow their family with two adopted children from abroad. And they happen to be little people, the polite term for those who suffer from some form of dwarfism.
I was impressed with Bill and Jen and their efforts to show the world that little people are just like everyone else. I don't know their goals for allowing cameras in their lives, as it has to be incredibly intrusive, but with this show it works. As a neonatologist, Jen Arnold is a working physician, and Bill Klein is a businessman. Then, as anyone who follows the show knows, while in India to pick up their adopted daughter, Zoey, Jen begins to bleed. A call home to her gyn results in a speedy trip back to the states where she is met by her mom and dad at the airport and then begins a series of tests to understand what is going on.
It's cancer. And quickly, the reality TV show became almost too real for those of us who have been there. As the build up to the show where we learn the details of Jen's cancer, I am sure most cancer survivors were saying, "It's cancer. We know the signs." Jen was diagnosed with gestational trophoblastic neoplasm, a very rare cancer that occurs in the tissue remaining after a failed pregnancy.
There were details not on the show but in the news about her treatment that I am not sure have yet occurred. For example, according to news accounts, chemo didn't seem to work at first, so they did a complete hysterectomy. Since, on this week's episode we saw Jen getting chemo, I don't know if the surgery is to come or if they already completed it and have moved on. At any rate, I am glad that Jen continues to affirm many details of the cancer experience.
For example, when she said the side effects of chemo seemed to be cumulative, it bothered me that even now, for a professional in the medical field, she still was not told that one fact. Chemo side effects are bad and they get worse with more treatment.
She has addressed the fatigue, which no one can tell you about until you experience it. I am glad we got to go with her to look for a wig and saw the quality she found at a shop that caters to those going through chemotherapy. We have such a shop here and it makes such a difference. Boy have wigs gotten better since the nasty things I wore in 1986.
Mostly, I am glad they decided to take the camera into chemotherapy with her and not gloss over it in the story line. I am sure the producers have had some serious talks about how much is too much when the other story line at home is the beautiful little Zoey with her big eyes, seriously smart and tender big brother Will – and a father who is clearly terrified. I applaud them for keeping the reality in reality television. Those who are newly diagnosed will find a friend in Jen as they struggle with the same issues. I just hope they let her continue to talk about the changes cancer has made in her new family – like living with the fear of recurrence -- and then celebrating when the cancer stays gone.
Once again cancer reminds us that it doesn't matter who you are and what you are doing. Jen, there are many who are with you and we send you our collective strength for the journey ahead.
BY ELIZABETH WHITTINGTON | MARCH 18, 2014
A new report reveals that incidence and mortality rates of colorectal cancer have been drastically reduced in the past 10 years. The article, "Colorectal Cancer Statistics, 2014" was published in CA earlier this month and reveals that there has been a steady drop in incidence rates over the past decade, most notably in individuals age 65 and older.
In the late 40s and early 50s, colorectal cancer was the number one cause of cancer death in the United States. Lung cancer would eventually surpass it, but many other factors over the past several decades have helped drive down colorectal cancer rates and deaths, including improvements in diet and lifestyle, increased aspirin use, the widespread adoption of routine colorectal cancer screening and advances in treatment. Experts predict that mortality rates could drop by 50 percent by 2020.
While there is much good news regarding the drop in incidence and mortality, as we dive a little deeper into the data, there is still much that needs focus.
Racial and socioeconomic disparities still persist. Death from colorectal cancer in black men is still 50 percent higher than in whites. What's interesting is that this wasn't always the story: In the 1960s, risk of death from colorectal cancer was actually lower in blacks than whites. Around the 1970s and 80s, incidence of colorectal cancer in black men began increasing while rates in whites began to drop. This can be traced to adoption of routine screening, stage at diagnosis, social and environmental factors and possibly diet.
Colorectal cancer increased in adults younger than 50. Experts believe that changes in diet and lifestyle may be a contributing factor. Focusing on reducing obesity in this group could be key.
Understanding cancer statistics helps researchers track patterns, which in turn can help identify strategies to reduce cancer incidence and deaths. With these new numbers, we learn that while we're making progress, there is certainly reason to celebrate. However, we also discover that we have much work to do, including continuing to build on improving colorectal cancer screening rates, engaging individuals who are at risk, including racial and socioeconomic groups and those who are underinsured and uninsured. We also have to examine why those under 50 appear to be developing colorectal cancer at increasing rates. Do we lower the age of routine screening, focus on diet and lifestyle changes or promote awareness of other risk factors, such as Lynch Syndrome?RELATED POSTS