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.


One-Two Punch of Palbociclib, Paclitaxel Shows Promise against Advanced Breast Cancer

“Combining the new breast cancer drug palbociclib with paclitaxel (Taxol) shrank tumors in nearly half of patient with estrogen-receptor (ER) positive breast cancer, according to new research from the Perelman School of Medicine at the University of Pennsylvania. The results will be presented Saturday at the 2015 San Antonio Breast Cancer Symposium. A second study provides new clues to how breast cancer develops resistance to the palbociclib, a common occurrence among many patients who take the drug.

” ‘Results of the first study found that palbociclib and paclitaxel can be safely combined on an alternating dosing schedule,’ said Angela DeMichele, MD, MSCE, the Alan and Jill Miller Associate Professor in Breast Cancer Excellence in Penn’s Abramson Cancer Center, and senior author on the study. ‘The high response rate we saw suggests this combination may hold benefits for patients over paclitaxel alone. Based on these results, a larger clinical trial to determine the benefits is warranted.’ “


Novel Immune-Based Cancer Drug Imprime PGG Appears Effective in Certain Lung Cancer Patients

Adding the drug Imprime PGG to chemotherapy and antibody therapy may be effective for certain patients with non-small cell lung cancer (NSCLC). Imprime PGG contains a molecule called beta glucan, which can stimulate the body’s immune cells to destroy cancer cells. This process may be especially effective in patients with high levels of immune system proteins that bind to beta glucan, so-called antibeta glucan antibodies. In a recent clinical trial, patients with advanced NSCLC received the antibody drug cetuximab (Erbitux) and the chemotherapy agents carboplatin (Paraplatin) and paclitaxel (Taxol/Abraxane), and some were also given Imprime PGG. While survival across all patients was not affected by Imprime PGG treatment, it was increased in Imprime PGG-treated patients with high levels of antibeta glucan antibodies. Seventeen percent of these patients survived 3 years or more, while none of the other patient groups did.


Four-Drug Combination Shown to Be Safe and Effective for NSCLC

A combination of the drugs carboplatin (Paraplatin), paclitaxel (Taxol/Abraxane), cetuximab (Erbitux), and bevacizumab (Avastin) has demonstrated effectiveness against non-small cell lung cancer (NSCLC) in a phase II clinical trial. One hundred two patients with advanced non-squamous NSCLC received the four-drug combo as a first-line treatment. Tumors shrank in 56% of patients and stopped growing in an additional 21%. Patients went an average of 7 months without their cancer progressing; the average survival time was 15 months. Four treatment-related deaths occurred, including two due to hemorrhage (heavy bleeding), which can be a rare but serious effect of Avastin treatment. This side effect profile was within the predefined safety margin. A phase III trial further investigating this drug combination for NSCLC is currently enrolling participants.


Erbitux-Avastin Combination Plus Chemotherapy in Lung Cancer Is Safe and Effective

Combining cetuximab (Erbitux), bevacizumab (Avastin), and traditional chemotherapy in patients with non-small cell lung cancer (NSCLC) appeared to be safe and effective in a phase II clinical trial. Patients with advanced non-squamous NSCLC received Erbitux and Avastin in addition to carboplatin (Paraplatin) and paclitaxel (Taxol/Abraxane) as first-line treatment, followed by maintenance treatment with Erbitux and Avastin. Tumors shrank in 56% of patients and stopped growing in an additional 21%. Serious side effects were relatively rare; the rate was comparable to that of either Erbitux or Avastin alone. Both Erbitux and Avastin have shown efficacy in NSCLC by themselves, but may be more effective when given together. An ongoing phase III clinical trial will further investigate this drug combination.


Alimta Offers Only Limited Advantage in Lung Cancer Study

The recent PointBreak clinical trial compared two treatment regimens for non-squamous non-small cell lung cancer (NSCLC). Previously untreated patients with advanced non-squamous NSCLC received initial treatment with carboplatin (Paraplatin), bevacizumab (Avastin), and either pemetrexed (Alimta) or paclitaxel (Taxol/Abraxane). The Alimta-treated group was then given maintenance treatment with Alimta and Avastin, while the other patients received Avastin only. Alimta treatment was associated with slightly longer times until the cancer progressed again (average 6.0 months, compared to 5.6 in the Alimta-free regimen). However, overall survival did not differ between the groups. The two regimens differed in what specific side effect were most common, but had similar overall toxicities and were generally tolerable.


New Cancer Drug Reolysin Shrinks Lung Tumors

Interim results from a phase II clinical trial of the new cancer drug Reolysin in squamous cell carcinoma (SCC) of the lung, a type of non-small cell lung cancer (NSCLC), show that tumors shrank in 23 of 25 patients. The patients had SCC that had spread from its original site, or recurred after treatment, and were treated with the chemotherapy drugs Paraplatin (carboplatin) and Taxol/Abraxane (paclitaxel) in addition to Reolysin. Ten patients experienced tumor shrinkage and 13 experienced stable disease, while the cancer progressed in 2 patients. On average, tumors shrank by a third of their original size. Reolysin consists of a modified form of a virus that selectively attacks cancer cells, while producing no symptoms in most healthy people.


Comparison of Combination Chemotherapy Regimens Shows No Significant Differences

Both pemetrexed (Alimta) plus carboplatin (Paraplatin) and Paraplatin plus paclitaxel (Taxol/Abraxane) plus bevacizumab (Avastin) are effective chemotherapy regimens against non-small cell lung cancer (NSCLC). However, until recently, the safety and efficacy of the two regimens had not been directly compared. To evaluate whether one regimen was superior, a phase III clinical trial determined how long patients with advanced non-squamous NSCLC remained free of either cancer progression or severe toxic side effects when treated with either of the two regimens. While patients receiving the Alimta plus Paraplatin regimen tended to have slightly longer relapse- and toxicity-free periods than those given Paraplatin plus Taxol/Abraxane plus Avastin, the difference was not very pronounced and could have happened by chance. The two regimens also did not differ regarding overall time until cancer progression, response rate and overall survival time.


Avastin-Taxol Regimen May Be Effective Late-Line Treatment for Advanced Non-Squamous NSCLC

A retrospective study assessed the use of weekly bevacizumab (Avastin) along with paclitaxel (Taxol) every 3 weeks in patients with advanced non-squamous, non-small cell lung cancer (NSCLC) who had previously received at least three rounds of treatment. The Avastin-Taxol combination was found to be an effective antitumor treatment. Some patients experienced serious side effects, including one death. However, overall toxicity was deemed acceptable compared to typical chemotherapy results in similar patients.