3 posts tagged “non-Hodgkin’s lymphoma”

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.

Every three minutes

Posted September 29th, 2014 by

That’s how often a person is diagnosed with blood cancer in the United States, according to the Leukemia and Lymphoma Society (LLS). This means that 156,420 Americans will be diagnosed in 2014, and hundreds of thousands more worldwide.

But that’s just the start of what everyone can learn during National Blood Cancer Awareness Month. Check out the Lymphoma Research Foundation’s (LRF) video below:

Did you know there are actually three main types of blood cancer? Each affects a different kind of cell in your body and can vary greatly:1

Leukemia is found in your actual blood and bone marrow, and it causes abnormal white blood cells to form and disrupt the normal immune system.

Lymphoma affects your lymph nodes and lymphatic organs, which are the parts of the immune system that remove excess fluid from the body and produce special white blood cells.

Myeloma is the cancer that is limited to plasma cells, which are cells in your blood that help produce antibodies and fight disease.

There are many subtypes of these three categories, including conditions like chronic lymphocytic leukemia, non-Hodgkin’s lymphoma and multiple myeloma, to name a few common ones. This month, get involved by participating in a Lymphomaton (a fundraising and awareness walk), finding a LRF chapter or even posting awareness flyers and posters on Facebook and other social media outlets.


Don’t forget to check out Bob’s blog interview – he’s a PatientsLikeMe member who shared about his life after being diagnosed with multiple myeloma and how he’s learned to manage his condition.


Share this post on Twitter and help spread the word for blood cancer.

1 http://www.hematology.org/Patients/Cancers/