Chemotherapy Drug Maintains Quality of Life Despite Side Effects

Excerpt:

“Patients with advanced neuroendocrine tumors (NETs) reported similar health-related quality of life (HRQOL) during treatment with a recently approved chemotherapy drug as compared to patients receiving a placebo treatment, according to a clinical trial published in Lancet Oncology.

“These findings, in conjunction with previous research showing delayed disease progression, suggest the drug, called everolimus, may be able to preserve quality of life even in light of chemotherapy’s often-toxic side effects. The findings support the usefulness of HRQOL as an endpoint in clinical trials studying NETs, in a secondary analysis of their findings, according to the study.”

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Expert Raises QoL Concerns With Adjuvant Hormonal Therapy in ER+ Breast Cancer

Excerpt:

“As research of early-stage estrogen receptor (ER)-positive breast cancer continues, experts are relying more on extended adjuvant hormonal therapy with aromatase inhibitors, but are concerned about patient quality of life (QoL) with such treatment.

” ‘My passion is to really try to figure out how to make the side effects of these therapies more tolerable and how to help women be able to actually have reasonably good and normal QoL while they’re taking these therapies, so that we can increase compliance,’ said Michelle E. Melisko, MD.”

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Super ASK Patient: Marilou Shares Her Experience as a Young Woman with Advanced Cervical Cancer


 
Marilou Gougeon received a diagnosis of early stage cervical cancer in November of 2012. By 2015, her cancer had progressed to stage 4, and in 2016 she reached out to ASK Cancer Commons for guidance on what to do next. Here, she shares her unique perspective on cancer and how it has impacted her life, as well as her thoughts on the difficulty faced by patients as they navigate cancer treatment.

 

Can you tell me a bit about yourself?

At 34 years old, when I was first diagnosed, I had a successful career in the Canadian federal government and a spouse with whom I wanted to have a biological child. Travelling abroad was at the center of our lives.

Now, I am 39 years old and I have incurable cervical cancer. I am not able to work anymore because of the treatment side effects, particularly chronic fatigue and anxiety. But I try to live the most normal life possible, within the limit of my “new normal” life.

My greatest passion is travelling. I have visited around 20 countries in five continents. I really feel that my heart is in Italy, and my soul in Japan. I am especially interested in almost everything related to Japan—the culture, people, craft, history, society, and more. I got married in a wonderful Japanese furisode (a style of kimono).

I always say that travelling is one of the therapies that has helped save my live. However, because of all the cancer treatments that I have received, I don’t have a lot of energy anymore, so I have adopted the “slow travel” concept and I really enjoy it.

Despite the diagnosis, I remain optimistic and I still have many dreams and plans for the future. And my greatest accomplishment would be to become the adoptive mom of a little angel from Vietnam. Because of my terminal status, we had to stop all our adoption plans, but we never know…

How were you first diagnosed with cervical cancer? Did you have any telltale signs or symptoms?

The first sign was that I had abnormal bleeding after sexual intercourse. I’d had normal Pap tests each year since my teenage years, but my most recent Pap test at the time did not detect my lesion; it was located too deeply in the endocervix.

At first, I was diagnosed with cervical cancer at the earliest stage, called “in situ,” caused by HPV 16. The gynecologist was convinced that a “simple” conization (surgery to remove a small amount of abnormal cervical tissue) would completely eliminate the small one-millimeter lesion, and that I would be cancer free. So at first, I was really not afraid or concerned. This little surgery is performed in a lot of women every day (my mother and sister-in-law have had it, and they both have been healthy for many years since).

How did your cancer progress, and what were your treatments?

In 2013, I received a radical trachelectomy, and in 2014 I received a radical hysterectomy, 35 rounds of external radiation, and six cisplatin treatments. In 2015, metastases were found on both of my lungs, and I was restaged to 4b. I received six carboplatin-taxol treatments from July to December of that year. In 2016, I had no evidence of disease (NED) until July, when a CT scan showed that a tiny nodule had been growing on my left lung. I contacted Cancer Commons in October of that year, just before receiving the results of the October scan. I wanted to receive professional advice to help me prepare a treatment plan, in case I needed to enter a clinical trial.

Marilou (middle) with her mom and aunt

How did you hear about Cancer Commons, and what were you hoping for when you reached out?

I heard about Cancer Commons while participating in a social media forum hosted by Inspire. One of the women on the forum had a good experience and suggested contacting Cancer Commons in order to receive professional guidance to navigate the complex world of clinical trials.

As a patient, I have encountered a lot of difficulties over the years. In general, oncologists don’t have time to keep themselves informed and really up to date about scientific developments, which now occur at a really fast pace. Also, oncologists are not well-informed about clinical trials being conducted at other cancer centers.

Given this situation, I understand that I should become my own advocate and become (and stay) well-informed about my illness and treatment possibilities. However, as a patient with no scientific background, I faced challenges: How could I be sure which drug molecules would be the best ones to try for my specific case, and which clinical trial should I choose? What are the latest scientific developments in cervical cancer?

Moreover, being French-Canadian, English is my second language, and it is sometimes difficult to truly understand the subtleties of some scientific articles.

These are some of the reasons why I decided to contact Cancer Commons. After having had a look at the website and the board of directors, I understood that Cancer Commons was serious and professional.

You received guidance from our chief scientist Emma Shtivelman. How has Emma helped you?

I always say that Emma was an angel that appeared in my life. Rapidly, I saw that her advice was professional and that her insights matched the latest publications, so I have developed very strong trust in her.

As a molecular and cellular biologist, she explained to me all the scientific facts that I didn’t understand. We discussed the latest publications about cervical cancer, immunotherapy, and targeted therapy. She helped me to determine which drug would be the best choice in my personal situation.

Moreover, what I appreciate the most about Emma is her human goodness and empathy. I have never felt I was just a case for her. She is really dedicated to the patient.

Also, knowing that Emma is there helps to relieve a lot of stress because patients often don’t have a lot of time with their oncologists, so a lot of questions are not always fully answered. With Emma, I know that I can reach her almost any time and she will have a professional answer to provide.

In a perfect world, I see Cancer Commons’ services as an integral part of a patient’s treatment plan. In every cancer center, patients should have access to a professional like Emma who can help them with those kinds of questions.

Where are you now in terms of treatment and prognosis?

Last spring, I was lucky to have the opportunity to receive stereotactic body radiation therapy (SBRT), which is a really precise radiotherapy, to treat the metastatic tumors on my lungs. My latest scan results were good; one tumor disappeared and the other ones are getting smaller. We will have more answers with my next scan in November. Except for some fatigue, the secondary side effects are nonexistent.

My oncologists really don’t know about my prognosis. It is really rare that a patient who is first diagnosed with “in situ” cervical cancer reaches a similar situation with distant metastasis. But if I consider the statistics, which predict about one year survival after metastasis, I have already beat them!

My next treatment will probably be through a clinical trial. Scientists know that with recurrent cervical cancer, traditional treatments stop working sooner or later. And doing too many chemotherapy treatments could diminish the chances of being accepted in some clinical trials, so I need to choose each treatment strategically.

How have you dealt with your side effects?

The major side effects for me are chronic fatigue and anxiety. I have been “lucky” since a lot of women who have received the same types of treatment have had more serious side effects; for example, bowel or bladder damage caused by radiation therapies. Luckily, that hasn’t happened in my case.

For anxiety, I have been treated by a wonderful psychologist and psychiatrist. Medication helps, but I also meditate and read literature about Buddhist philosophy. Strange to say but astrophysics and quantum physics theories make me think about my tiny place within the universe and help me to cope with my fear of death.

For chronic fatigue, I take medication used in the treatment of narcolepsy. It helps me to have a more “normal” afternoon. However, my energy level is still really low, so I need to adapt and plan my days as a result. Now, I appreciate every moment when I am doing an activity, and I try to sleep and rest a lot.

I have a completely different life compared to other people my age. I really think that with this kind of situation (major disease at a young age), adaptability is the key to keep a healthy mind.

Marilou with her husband

How else has cancer affected your life?

I enjoy every moment, at a slower pace. I have completely changed my lifestyle (no more “cult of being busy” and trying to meet society’s competitive standards). I place my family and my friends at the heart of my life. I try to develop more compassion—for others, but also toward myself. I have never been so close to my mother, and I have realized how good a person my husband is and how deeply I am in love with him. I have never been so happy!

You mentioned that you are involved in an online cervical cancer discussion forum. How has it helped you?

The Inspire forum has been a great resource in terms of sharing experiences with other cervical cancer patients. It is where I was first informed about the existence of clinical trials and Cancer Commons. I am also member of some open and closed Facebook groups (managed from the U.S., Canada, and Europe) for advanced cervical cancer patients.

I am looking into getting involved with an organization called Cervivor because they would like to promote clinical trials accessible to women with cervical cancer via their website. And I follow the top U.S. cancer centers and gynecological cancer organizations’ posts on social media.

On a daily basis, I read research results presented at international conferences, medical news, and the most recent scientific articles. Being involved in social media and reading a lot of scientific news has helped save my life; I am convinced of that.

What advice would you give to a woman who is newly diagnosed and is starting to consider various treatments, including clinical trials?

Over the years, I have spoken with a lot of cancer patients in Canada, Europe, and the U.S., and it seems that the same problems exist all over the world (for instance, knowledge and accessibility about new cancer treatments).

Cancer patients need to be involved in their own medical decisions. The time when doctors possessed the science and patients simply accepted that is now over. Today, I see oncologists as one source of information among many others (even if it is an important one). Additional information exists, it is available, and cancer patients need to understand that. And they need to understand that, even in a reputable cancer center, doctors are not all equal in terms of knowledge, competency, thinking out of the box, patient dedication, and more. Also, if needed, patients can look to other hospitals’ and cancer centers’ clinical trial options (inside or outside their city or province), in order to receive the best treatment.

Over the years, I have seen the worst and the better. Patients should never accept a negative answer or a decision they are not comfortable with. I have seen many cancer patients being told that there was nothing else that could be done for them with regular protocol treatments. However, those oncologists never mentioned clinical trial options. Only after patients have requested second and third opinions are they directed to a clinical trial, and these patients are still alive many months or years after their death sentence. Personally, I cannot accept or tolerate this difference between oncologists’ and cancer centers’ approach and vision.

People always mention that cancer is a battle. Personally, I don’t think that today it is the cancer itself which is a battle. The real battle is more the bureaucratic barriers, the costs of new cancer treatments, and obtaining the best treatment at the best time.

Is there anything else you’d like to spread the word about?

As a society, we need to begin a dialogue/debate about the cost of new molecular drugs. We also need to discuss the inequality in terms of treatment options between hospitals (a lot of statistics already exist on the topic of regional hospitals versus bigger cancer centers).

Patients need to be more informed about the real process behind clinical trials. We need to be informed of how hospitals, the government, and pharmaceutical companies collaborate, negotiate, and determine which treatments will be available where. We need to know why some centers only test some obscure molecules while other hospitals offer a wide variety of drug and clinical trial options. Patients also need to know which doctor or hospital is the best for their specific case. And, finally, in order to choose the best treatment center, patients need to be informed about hospitals’ strategies in terms of development, financing, and scientific research priorities.

Cancer Commons helps tremendously with this gap in knowledge, but much more work needs to be done to improve the system for patients.

***

Super Patients are cancer survivors who learned to be more engaged in their own care. Cancer Commons believes every patient can be a Super Patient or benefit from a Super Caregiver or Super Advocate. We hope these stories will provide inspiration and hope for your or your loved one’s own treatment journey.


Post-Mastectomy Fat Grafting Boosts Patient-Reported Outcomes

Excerpt:

“Women with breast cancer who undergo autologous fat grafting following post-mastectomy breast reconstruction want a breast that looks and feels more natural and say it makes life better psychologically, emotionally, and sexually, according to researchers.

“Results from the ongoing Mastectomy Reconstruction Outcomes Consortium (MROC) study now show that fat grafting is effective and safe and that it does not increase risk for breast cancer recurrence or intervene with breast cancer screening.”

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Active Surveillance Preserves Quality of Life for Prostate Cancer Patients

Excerpt:

“Faced with the negative quality-of-life effects from surgery and radiation treatments for prostate cancer, low risk patients may instead want to consider active surveillance with their physician, according to a study released Tuesday by the Journal of the American Medical Association (JAMA).

“The Vanderbilt University Medical Center study led by Daniel Barocas, M.D., MPH, associate professor of Urologic Surgery, compared the side effects and outcomes of contemporary treatments for localized with in order to guide men with prostate cancer in choosing the best treatment for them.

“Surgery is considered by some to be the most definitive treatment, and there is evidence from other studies that it has better long-term cancer outcomes than radiation for higher-risk cancers, but it has more sexual and urinary side effects than radiation.”

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Older Women with Breast Cancer Report Better Cosmetic Satisfaction with Less Radiation, Less Surgery

Excerpt:

“In the first study evaluating patient-reported cosmetic outcomes in a population-based cohort of older women with breast cancer, The University of Texas MD Anderson Cancer Center researchers found that less radiation was associated with improved cosmetic satisfaction long-term. However, reduced radiation was also associated with a slightly increased risk of disease recurrence.

“The findings, presented at the 2016 San Antonio Breast Cancer Symposium in a poster session by Cameron W. Swanick, M.D., should serve as an important discussion point between older patients and their physicians when making treatment decisions.”

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Scalp-Cooling Device Cuts Hair Loss in Breast Cancer Patients Undergoing Chemotherapy

Excerpt:

“While nothing easy or simple comes from a cancer diagnosis, one of the most traumatic experiences for breast cancer patients, particularly for women, is hair loss. Dr. Julie Nangia, assistant professor in the Lester and Sue Smith Breast Center within the NCI-designated Dan L Duncan Comprehensive Cancer Center at Baylor College of Medicine, sees this all too frequently when treating her patients.

” ‘Hair loss takes a tremendous toll on the patient’s body image, and they no longer have the anonymity of hiding the disease; everyone can see that they’re sick,’ said Nangia. ‘Patients and physicians have been hoping and searching for methods or therapies to prevent or reduce hair loss due to chemotherapy, but the options have been very limited due to the complexity of both the disease and the treatment.’

“Nangia may have found the answer in research presented at the 2016 San Antonio Breast Cancer Symposium, which details the results of a study using a scalp cooling cap to reduce hair loss in breast cancer patients undergoing taxane or anthracycline chemotherapy.”

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Hormel Joins Cancer Specialists to Develop Line of Ready-Made Foods for Chemo Patients

Excerpt:

“Shortly after his mother died of cancer two years ago, Jeff Ettinger, then-chief executive of Hormel Foods, asked the company’s specialty division to explore how to help people undergoing treatment or recovering from it.

“The timing was right. The Cancer Nutrition Consortium, a group of U.S. cancer researchers, was looking for a food manufacturer to produce nutritional products based on what they saw was a gaping need. Patients undergoing chemotherapy tend to experience extreme fatigue, unintentional weight loss and suppressed appetite and energy.

” ‘You feel like you finished the New York marathon and have no energy to cook,’ said Dr. Bruce Moskowitz, a Florida physician and consortium board member. ‘Many people end up going to a fast-food restaurant to take home a meal, which is not the nutrition they need.’ ”

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Super Patient: Honesty and Openness Help Lori Through the Holidays


When it comes to the holiday season, Lori Wallace, a mother of two sons, is accustomed to being in charge. “I’m the mom, I’m kind of the epicenter of my family,” she says. “So I make Christmas.”

But in early April of 2011, Lori woke up with pain in her breast from what she thought was a small toy left in her bed by her five-year-old. No toy was there, and the pain persisted. She soon had her diagnosis: stage IIA invasive ductal carcinoma. Continue reading…