2 posts tagged “CTCL”

Meet Phyllis from the 2015-2016 Team of Advisors

Posted March 2nd, 2016 by

 We’d like to introduce you to Phyllis, another member of your 2015-2016 Team of Advisors. Phyllis is living with Cutaneous T-Cell Lymphoma (CTCL) as well as Hodgkin’s lymphoma. Still, the former mayor of Princeton, NJ, leads an active life by spending time with her grandchildren, cheering on the Mets and taking brisk walks when she can (she’s run 18 marathons in her life).

Phyllis is also involved in a mentoring program at University of Pennsylvania, in which first-year medical students shadow her for over a year. The purpose is to bring humanity back to medicine by helping the next generation of doctors to better understand the patient perspective.

Below, Phyllis describes the power of a positive attitude and shares the lesson she’s learned from living with cancer: “Every day is a gift.”

What gives you the greatest joy and puts a smile on your face?

My eight grandchildren. In 2005 when I was diagnosed with CTCL (Cutaneous T-Cell Lymphoma) and later Sezary Syndrome, a non-Hodgkin’s lymphoma, I had three young grandchildren. Now 10 years later, I have the joy of seeing five more.

I always enjoyed running. I was a marathoner (completed 18), but once I got my cancer, my energy level plummeted and sun exposure was limited due to drugs I still take. I now smile when I can take a brisk walk on a beautiful day. Mother Nature in all her glory makes me feel joyous and alive.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Having my cancer is a full-time job! Living with my chronic non-Hodgkin’s lymphoma, and then developing a Hodgkin’s lymphoma was not expected. I undergo photopheresis treatments twice a month at the University of Penn, give myself interferon injections twice a week and apply topical chemo or steroid drugs on my skin every night. I also have scars on my arms and legs from the cancer lesions and from radiation. Perhaps the rarer diseases should get more publicity so people would know what orphan disease patients are going through.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

CTCL is not a skin cancer although it starts on your skin! It is a lymphoma, that in my case has progressed to the blood, the leukemic form called Sezary Syndrome. When it progresses to your lymph it is most aggressive. Your skin can get very red and unbearably itchy. Lesions can develop anywhere on your skin. It is a disease that can be very visible to others. There is no cure, but one may be lucky to get into remission. I have not been so fortunate after 10 years of enduring this, but I am optimistic and grateful for new medicines, innovative treatments and most of all, caring and knowledgeable physicians.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Be positive and keep a sense of humor. Educate yourself about your condition. Share your medical diagnosis only with family and friends you trust, especially in the beginning before you have your medical treatments finalized. Some people are just curious, nosey and gossips!

How important has it been to you to find other people with your condition who understand what you’re going through?

Very important and very educational and very comforting.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

I am happy when I can help another patient who has my condition because it makes me realize how well I have coped.

Has having a serious chronic disease changed you in any way, negative or positive?

Yes. Once I got my cancer under control, I realized that every day is a gift. I feel that I appreciate life more and live each day to the fullest. I have learned “Don’t sweat the small stuff.” I love the spiritual perspective on life that came about because of my cancer.


Share this post on Twitter and help spread the word.

PatientsLikeMe and Actelion to develop new patient-reported measure for mycosis fungoides-type cutaneous T-cell lymphoma (MF-CTCL)

Posted August 5th, 2014 by

Patients To Share Their Experiences, Help Researchers Better Characterize Disease
And Develop Treatment Strategies 

CAMBRIDGE, Mass.—August 5, 2014—PatientsLikeMe and Actelion Ltd. (SIX: ATLN) are partnering in a research initiative to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL. The collaboration will leverage PatientsLikeMe’s Open Research Exchange (ORE), an online hub for developing and sharing new health measures that better reflect patients’ experiences living with and managing disease.

Actelion is the first pharmaceutical company to use ORE to create a measure for a rare condition and, once completed, to share it with other researchers. Actelion’s Senior Director – Medical Head of VALCHLOR and ZAVESCA Mitchell Nagao said he believes this open approach to research will enhance the existing evidence about MF-CTCL. “As changes in technology, culture, and treatment affect how patients live with disease, we want measurement to evolve accordingly. Our work with PatientsLikeMe will help ensure we’re applying the best principles for patient-centered research and giving tools back to the community so they can evolve them even more.”

PatientsLikeMe Vice President of Innovation Paul Wicks said the project further reinforces that ORE is a proven platform for developing new patient-based measures. “We created ORE to help patients and researchers work together to transform care and discovery that truly serve the patient. Now we’re past the initial pilot stage, and it’s exciting to see members of industry engaging with patients to develop more tools that really measure what matters to patients.”

Actelion will work with PatientsLikeMe to engage people who have MF-CTCL for support and research and to develop and test the tool. PatientsLikeMe welcomes anyone with MF-CTCL who is interested in contributing to join in at www.patientslikeme.com.

Cutaneous (skin) T-cell lymphomas (CTCL) are non-Hodgkin’s lymphomas that primarily involve the skin but can also involve the lymph nodes, blood and other organs. Mycosis fungoides (MF-CTCL) is the most common type of CTCL.

About Actelion Ltd.
Actelion Ltd. is a leading biopharmaceutical company focused on the discovery, development and commercialization of innovative drugs for diseases with significant unmet medical needs. Actelion is a leader in the field of pulmonary arterial hypertension (PAH). Our portfolio of PAH treatments covers the spectrum of disease, from WHO Functional Class (FC) II through to FC IV, with oral, inhaled and intravenous medications. Although not available in all countries, Actelion has treatments approved by health authorities for a number of specialist diseases including Type 1 Gaucher disease, Niemann-Pick type C disease, Digital Ulcers in patients suffering from systemic sclerosis, and mycosis fungoides type cutaneous T-cell lymphoma. Founded in late 1997, with now over 2,400 dedicated professionals covering all key markets around the world including Europe, the US, Japan, China, Russia and Mexico, Actelion has its corporate headquarters in Allschwil/Basel, Switzerland. Actelion shares are traded on the SIX Swiss Exchange (ticker symbol: ATLN) as part of the Swiss blue-chip index SMI (Swiss Market Index SMI®). All trademarks are legally protected.

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.


Samantha Cummis
Actelion USA
+1 650.808.6615

Margot Carlson Delogne
+1 781.492.1039