Category Archives: News & Updates

Troopers and Alliance to Merge

Pheo Para Alliance and Pheo Para Troopers, the two most recognized global nonprofit organizations focusing on pheochromocytoma and paraganglioma (pheo/para) have announced their intentions to merge. The goal of the merger is to optimize assistance to patients of this orphan cancer.

Historically, the Pheo Para Alliance has focused on donor programs that support research and medical advances, while the Pheo Para Troopers created a grassroots campaign for direct patient support.  The decision to merge comes at a time when both organizations are poised for a period of significant growth.  Combining research, funding and patient direct support will make the new Pheo Para Alliance the most comprehensive pheo/para patient organization on the globe.

Emily Collins, chair of the board of directors for the Pheo Para Alliance, stated that “We have always been partners – we helped to fund the Pheo Para Troopers initially – we have several connections for fundraising and want to be more involved with patient direct services to compliment the numerous research grants we fund.”

“The Pheo Para Troopers has quickly become a well-recognized and respected organization internationally in the world of pheo/para…  With the merger, we expect to see the realization of our mission through a much broader resource pool” says Allen Wilson, president of the board of directors for the Pheo Para Troopers.

Matthew Capogreco, Secretary for the Pheo Para Troopers and a founding member of that organization, sums up the benefits he envisions: “In the end, patients, researchers, and members of the medical community will benefit from this forward-thinking move.  As it has been for both organizations in the past, the primary goal of the new Pheo Para Alliance will be to increase awareness of the number-one most misdiagnosed cancer –- pheochromocytoma.  Both groups firmly believe the success of this merger will be measured in the lives saved.”

Pre-screening for Inclusion in a Clinical Trial

A clinical research group at Yale Medical School anticipates beginning a clinical trial in the near future with pheo/para patients to test a drug already approved for use in multiple types of cancer for efficacy in our patient population.

If you are interested in learning more about this trial and being pre-screened for potential inclusion in this study, please contact  Dr. Ranjit Bindra at: ranjit.bindra@yale.edu

Report: UPenn’s Focus on NETs

[Editor’s Note: This article was written by Alisa Zaita.]

On Friday, May 5, 2017, I attended the 6th Focus on Neuroendocrine Tumors at the Abramson Cancer Center at the University of Pennsylvania in Philadelphia. As usual, the topics and presentations were both informative and engaging. The conference was seamlessly co-chaired by Debbie Cohen, MD and David C. Metz, MD.

We were given an informative presentation by Ron Hollander, the Executive Director of the Neuroendocrine Tumor Research Foundation. This charitable organization received a grant in the amount of $15,000,000 from the Margie and Robert E. Petersen Foundation. Mr. Petersen, who headed up a publishing empire which included such well-known publications as Motor Trend and Guns & Ammo, died from complications of a neuroendocrine tumor in 2007. Ron and his organization have made very good use of this incredible donation and they presented a short film which showed the research projects that the NETRF is funding and the grant recipients with a brief description of their projects. They have sought out the best and the brightest in the medical field across the country and are funding research which we hope will find the path that leads to a cure of this disease. His presentation invoked a sense of hope that we are not alone, and that there are people working behind the scenes to help us in this journey.

There were presentations from various doctors who comprise UPenn’s multidisciplinary team of their neuroendocrine department. Dr. Alexander Pryma gave a presentation on nuclear imaging and therapies, including Azredra and Lutathera, both of which are pending FDA approval. Dr. Bryson Katona gave a talk about clinical updates and promising studies that UPenn has been involved in. One project of involvement was the immunization of a llama in order to further research on Car-T therapy and the manipulation of cells to internally conquer or inhibit tumor growth. They are also using nude mice in the lab to further their research on novel targetable pathways.

Of great interest to me was the work being done by Dr. Michael Soulen. He shared with us a study regarding embolization for NET metastases. Liver involvement is one of the primary concerns for neuroendocrine patients. UPenn is currently heading up a clinical trial, called the RETNET trial, which is being conducted in conjunction with several other major US centers, including, Dana Farber, Memorial Sloan Kettering Cancer Center, MD Anderson, Vanderbilt, Stanford and is also in some European sites. This trial has been designed to measure the effectiveness of the various types of embolization currently used in patients who have compromised liver due to disease burden. The researchers suspect that chemoembolization (which is where they cut off the blood supply to the tumor and then directly treat the tumor itself while the patient’s abdomen is open during surgery with a dose of chemotherapy agent) will prevail as the best method of embolization. I am excited to see how this study plays out at next year’s conference!

Photos from the conference appear below. Clicking on an image will open a larger version in your browser window.

                              

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Progenics Announces AZEDRA Milestone

Progenics Pharmaceuticals, Inc., announced the achievement of an important milestone that moves their orphan drug AZEDRA® (iobenguane I 131) Injection closer to requesting FDA-approval.  AZEDRA is a targeted radiotherapeutic agent being evaluated as an imaging agent at low doses and a cancer-killing therapy at high doses for the treatment of malignant and/or recurrent pheochromocytoma/paraganglioma.  Results from a phase 2b trial showed that treatment with AZEDRA resulted in significant reductions in the use of antihypertensive medications needed to control blood pressure.  The announcement also referenced favorable data on overall tumor response, suggesting that AZEDRA may provide clinically meaningful impacts on the tumor.  In addition, AZEDRA was reported to be generally well-tolerated.

As of today, there are no FDA-approved therapies for the treatment of malignant pheochromocytoma/paraganglioma.  If approved, AZEDRA could be a promising step in improving the lives of patients with this rare disease.  Mark Baker, CEO of Progenics, is anticipating the New Drug Application (or “NDA”) will be submitted to the FDA by mid-year and hopes that this drug will be offered expedited review, since it has been granted “breakthrough,”
“fast track,” and “orphan drug” status by FDA.  The clinical trial’s lead investigator, Dr. Daniel Pryma, Associate Professor of Radiology & Radiation Oncology and Chief, Division of Nuclear Medicine & Clinical Molecular Imaging at the Perelman School of Medicine at the University of Pennsylvania, said, “With the lack of approved treatment options many patients are treated with the ‘kitchen sink’ approach [and] given a variety of toxic and ineffective treatments.”  AZEDRA represents a treatment option that could help deliver lethal levels of radioactivity to the tumor and presents a targeted treatment therapy to our patient base.

We will keep you posted on any details we hear regarding the trial and the anticipated approval, which we hope will be a significant step in the right direction for our rare disease community.

AZEDRA® is a registered trademark of Molecular Insight Pharmaceuticals, Inc., a wholly owned subsidiary of Progenics Pharmaceuticals, Inc.

 

A Trooper Story

(The following article was contributed by Attiya Khan.)

Today is Rare Disease Day. In December 2016, I was diagnosed with pheochromocytoma (pheo). Pheo is a rare tumor that usually develops in cells of an adrenal gland.  

I want to let others know what this has been like for me. This is not so others can feel sad or sorry for me. Please don’t! I just want to share my experience. I feel like I have been hiding it (not too many people know) and for some reason, all of a sudden, I want to tell you about it! Plus, I’d like to raise awareness about it.

My tumour is in my right adrenal gland. We have two adrenal glands – one above each kidney. Both the tumour and the adrenal gland will be removed on March 23rd. That’s 23 days from now. This is all I can think about. I think about what the surgery will be like, how my body will respond to the surgery, what kind of scars I will have and how I most likely will be back to feeling like myself once the tumour is removed. I actually cannot imagine not feeling sick, or being able to walk out the door alone, or socializing again, or working with my incredible team on the soon-to-be released film A Better Man, or playing with my son or going for a run with my sweetheart, Alex.

My symptoms started affecting me in April 2015. I experienced them as episodes that occurred several times per day. The episodes come on suddenly and then disappear after a few minutes. I would have painful, brief (2-4 minutes long) headaches that came on suddenly. These headaches felt like my brain was pulsing against my skull and I thought my head was going to explode. If Alex was near me, I would have him put both hands on my head to apply pressure. This didn’t stop the pain but it did make me feel better. While the episode was happening I felt like I couldn’t function. I couldn’t move, talk, or breathe. I would try to grab onto something or someone to steady myself as the episodes were so intense I felt like I might faint. They were painful and scary. After each episode, I felt exhausted and sad. What I also noticed in April 2015 was that I could not stop sweating, ever. And I had constant hand tremors that became more severe each month.

My doctor ordered a CT scan. It showed sinusitis. I took a nasal spray. I remember at the time thinking that it helped minimize the headaches. However, in the winter of 2015, my headaches started to happen more frequently and became more severe.

By the summer of 2016, I began to have many more symptoms. My episodes included severe headaches, heart palpitations, nausea, shortness of breath, ridiculous amounts of sweating, dizziness, numbness from the bottom of my knees to my ankles, coldness in my hands and pallor in my palms.  My hand tremors became so bad at times that I couldn’t hold anything without dropping it. I gagged violently and threw up almost every day. I couldn’t shake the incredibly scary feeling that I am dying. I felt like something was slowly eating me on the inside.

I went to my doctor. I went to emergency rooms at several different hospitals. I was desperate for someone to take my symptoms seriously. I was not being heard at all. One emergency doctor laughed at me, cut me off as I was describing my pain and told me that I was having panic attacks. He spent less than 5 minutes with me after I waited 4 hours. I told him that I knew I was not having panic attacks because I had had them in my early 20s and they felt very different than what I was experiencing now. The look he gave me was condescending and rude. To me, it felt like he did not believe anything I said. The thing that bothers me the most is that even if I were having panic attacks, the doctor offered no real support. He made it seem like panic attacks are a small thing and they aren’t. They are terrifying and can mess up your life in huge ways. They should be taken very seriously. In any case, the emergency room doctor refused to give me an MRI and I left without any tests being performed.

Throughout this whole ordeal, almost every doctor I saw thought I could be having panic attacks, even after I explained all my symptoms. I’m so angry about this. I realize that a few of the symptoms commonly associated with pheo are similar to those linked with panic attacks. But I know my body. I knew something terrible was happening inside. I needed a doctor to care and say “ok, I hear you, let’s do a range of tests until we figure out what you have. I want to help you feel better. I’m sorry you are in pain”. Up until that point, no one had ever said that. To me, this is unbelievable.

I felt like no one wanted to take the time to really figure out what was going on with me. I was so fatigued by the illness that I did not have my usual energy to advocate for myself. One thing I’ve learned from this experience is the importance of patients advocating for themselves or having others advocate for them. And for some of us whose illnesses cause us to be exhausted, it can be impossible to advocate for ourselves. It took both me and my partner a while to learn the importance of this advocacy and the fact that I needed more support than we initially anticipated. Most people we have talked to had to learn this the hard way: through experience with a severe illness – either their own or that of a loved on.

Thankfully my partner, Alex ended up coming with me to my appointments and he took notes on everything the doctors and I said. We even put together a detailed, colour-coded one-pager with all my symptoms, key medical history, and timeline to help the many medical professionals we were seeing quickly understand my situation without having to repeat everything from scratch each time.

Having someone with me made everything so much easier. I’m grateful to have someone who can do this with me. I noticed a huge shift in how I was being listened to and treated when Alex accompanied me. All of a sudden, I felt like people had more time for me. While on one level this was a huge relief, it also troubled me that, without Alex by my side, and as a woman advocating for my own care, the health care system seemed to suggest I was just overreacting. There is a long history of women dismissed as “hysterical” when in fact they are suffering from something very real.

At the end of summer, I had an MRI. It showed a small “pineal gland cyst” in my brain. I immediately started researching pineal cysts and began to feel that this was what I had. I went on online message boards and noticed that some of my symptoms lined up. I was referred to a neurologist in October 2016. The neurologist thought that my symptoms were not linked to a cyst in the brain. Luckily, I had a very mild episode in front of him. Seeing this, the neurologist referred me for cardiology tests, neurological tests, blood tests and urine tests. This was the first time I felt like someone was doing something concrete. I am so grateful to this man for his curiosity.

At the end of November 2016, I went to a dinner at a friend’s house. At this dinner I met a woman who just happened to be an internist (specialist in internal medicine). Alex and I told her about my health issues. She said that if she were treating me, she would test me for pheochromocytoma. We asked her to spell it and wrote it down. How she thought of this very rare condition after only a few minutes of my describing my symptoms, I still don’t know, but I feel incredibly lucky for her instincts and caring. I still wonder what would have happened (or not happened) had I not met this woman. We exchanged emails.

The next day the internist emailed me and said she had spent some time researching my symptoms. She thought I should get tested for pheo. She told me there was a 24-hour urine test and a blood test that could detect it. By this point, my episodes were happening about 8-12 times a day. I was unable to focus. I could not work. I could barely leave the house. I was so fatigued that I was napping (I have been living with severe insomnia for 10 years so napping is very unusual for me).  When I did leave the house, I constantly worried that an episode would happen. Episodes did happen. My 10 year old son would have to stop and hold me up while walking to school. I had to grab onto people on the sidewalk, crossing the street and in the grocery store. I had so little energy and I was losing my strength. I was losing weight. The skin in my face felt really thin. My mouth was very dry. I felt strange things I had never felt before: my bones ached, the blood in my body felt heavy, my eyes hurt, my entire body felt sick.

When I finally completed the 24-hour urine test, the results showed that I had pheo. I was referred to an excellent endocrinologist who I can email at any time and she emails back promptly and sometimes calls back even on evenings and weekends. It was nice to finally meet someone who understood what I was going through. Her receptionist is also amazing and has helped me realize what a different doctors’ office staff can make in patients’ lives. I want everyone to have someone like her helping them. I never feel like I am bugging her with all of my concerns and questions. I can tell that the endocrinologist and her staff really want to help me.

Today, I am nervous to go out alone since I am unable to run or defend myself if needed. Anyone who knows me is aware of the intimate partner violence I experienced as a teenager. Since then, my body has been programmed to be on alert and ready to run if I need to. Today I am physically unable to do anything but walk very slowly. Pheo has triggered so much of the isolation, pain, discomfort, and sadness that I experienced in the abusive relationship I was in as a teenager. I wish medical professionals thought more about how past trauma can affect a patient, and about the connections between past trauma and illnesses both mental and physical. I think it would be very beneficial for our medical system to acknowledge that so many of us needing support are also survivors of violence.

I also wish more doctors, nurses and receptionists were kind to patients. Acknowledge us. Say hello. Ask us how we are. Make eye contact. These small gestures of respect and compassion make an enormous difference.

I wish the medical system adopted a more collaborative approach towards patients and a deeper respect for patient experience. Truly listen to us and be open to the possibility that we may have some answers or ideas to figuring out our own health diagnosis. Just doing these things would have made a huge difference in my life. I have had a few health care professionals treat me with kindness but many have not. I’ve been living in my body for longer than they have been “caring” for me. Why can’t this be a collaboration? Your expertise and my experience. Both should be valued. In my case, I feel like a collaborative approach could have led to a much earlier diagnosis and many fewer months of uncertainty and suffering.

The experience has also taught me what a difference health professionals who truly care can make. It is quite possible that my life has been saved through a combination of caring interventions by the internist, my endocrinologist, and my endocrinologist’s staff.

Having pheo has taken my spirit away. I don’t feel like myself. I realize that, until now, I never came close to understanding what it’s like to have a debilitating illness. Sitting at home and not feeling like I’m a part of the outside world is new to me. I also feel like I’m not really part of my inside world at home. I just sit and watch as my family and friends come and go. This is quite painful.

I must acknowledge the privilege I have as a person who had been healthy and able-bodied for over 40 years, and that has an amazing support network around me. I do feel lucky that I can walk, eat without help, sleep in my bed and be at home with my son and sweetheart. I have had friends drop off a dinner for me and my family every day for almost two months now. Flowers and treats are left on my porch. I receive texts and emails that show love and kindness every day. Friends hang out with me on my couch and tell me stories, share gossip (thank goodness) and make me laugh. This support has saved me. I think often about people who are ill and don’t have a support network like I do. And that is just not fair. And it’s sad.

I also feel lucky that it’s highly likely that I will wake up from surgery and within six weeks I will have regained much of my energy.

But even if my illness can be cured, I believe pheo has permanently changed me. I have learned to notice and appreciate the small things. I have learned to experience meaning in the boring, the everyday. I have learned how important my friends are to me. I have learned how little we know about what others are going through. I am more committed than ever to living a full life full of appreciation and care for others. In a strange way, I feel more alive than ever. I am grateful for this.

NET Cancer Day 2016

Thank you for your interest in the World NET Cancer day on Thursday 10 November 2016, and the “Let’s Talk About NETs Campaign”. World NET Cancer Day is an annual, awareness-raising event coordinated by the International Neuroendocrine Cancer Alliance (INCA) at an international level. The PheoPara Troopers is partnering with INCA in this effort.

Neuroendocrine cancer (NETs) is the umbrella term for a group of unusual, often slow-growing cancers, which develop from cells in the diffuse endocrine systems. Pheochromocytomas (pheos) and paragangliomas (paras) are types of NETs that most commonly develop in or near the adrenal glands and throughout the sympathetic nervous system, but can be found anywhere in the body. NET cancers are on the rise and can affect both men and women of any age.

The aim of World NET Cancer Day is to:

• Raise awareness of NET cancers among decision makers, health professionals and the general public. Accurate information is key to improving quality of life and prognosis for NET cancer patients and can decrease misdiagnosis
• Focus on NET cancers for a day to bring hope and information to people living with NET cancers, their caregivers and families
• Ensure equity in access to care and treatment for NET cancer patients around the world
• Encourage more funds for research, treatments, patient support and resources for NET cancers.

To make this day successful, we are seeking support from all over the world. We are asking people, cafeterias, cafes and others, to use our World Net Cancer Day (Let’s Talk About NETs) branded coffee cups for the day. We will provide (at no charge) you with our branded coffee cups, lids and promotional material. Additionally, pheo/para patients, family members or other volunteers might seek your permission to make use of your venue to host an informal chat about NET cancers on that day.

We thank you for your interest in raising much needed awareness for NET Cancer on World NET Cancer Day, and helping us seek a cure for NET Cancer.

For inquiries and information regarding World NET Cancer and the “Let’s Talk About NETs Campaign contact us by emailing paratrooperkim@gmail.com.

Trooper Wins Gold!

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Congratulations, Tisa Perra! She recently competed in the 2016 Canadian Transplant Games in Toronto. She won Gold in 5 km cycling, Gold in 20 km cycling, Gold in 3 km race walk and Silver in the 100 m dash!

Troopers at PACT Digital Health Summit

On June 15, 2016, Alisa Zaita (Pheo Para Troopers Treasurer) attended the PACT Digital Health Half-Day Summit in Philadelphia, PA. The Keynote speaker was a doctor by the name of Howard Krein. He is a head and neck surgeon and captivated the audience by telling how when his brother in law was diagnosed with an aggressive form of brain cancer, he had difficulty navigating around the medical records department to get scans and data from one expert to another around the world. In this day and age that lag time is simply unacceptable. Alisa found it hard to believe that a surgeon had a hard time, but then he went on to disclose that his brother in law was actually Beau Biden, the Vice President’s son. It speaks volumes as to how we need to change our health system to allow the right people to access records on the spot. Alisa had the honor to sit on a panel discussion to speak about cancer treatment and raising awareness for pheochromocytoma patients.

Learn more about the conference here.

In Case You Missed It…

The Pheo Para Troopers newsletter went out to our registered users around the world last month. You can find it here.

Also, two weeks ago, the Troopers sent out another email to share the videos of the 2015 Conference. You can watch them here.  Note: the software used to capture the videos is supported by the Firefox web browser. In order to watch the videos, you will have to open the links in Firefox. Instructions on how to get the free web browser can be located on the page with the video links.

Don’t miss out!

If you haven’t signed up and registered for the site you won’t be able to get our emails right away. It’s free!