Survivorship Care Plan

Survivorship Care Plan

DR Tess Nowell

DR TESS NOWELL, AUTHOR

This is a very exciting moment for me and, I hope, for many. The care plan that I have been working to develop over the past three years has finally reached a stage where we can share it. The evidence is quite sparse for how best to manage long term effects and risks associated with a diagnosis of Hodgkin Lymphoma and subsequent treatment. Therefore, the strategy has been to develop sensible recommendations. These are designed to help you have conversations with your doctors and health care professionals about planning your care. As Hodgkin Lymphoma is quite rare, many of these people may not know much about the relevant issues.

In putting this together I have taken account of existing guidelines from the USA, UK and Europe, and have been fortunate to have advice from the Oncology Department in Oxford (UK), where I live and work (and receive my medical care). There is a lot of work ongoing in the UK and internationally to try to standardize follow up for survivors of cancer, based on evidence that is gradually emerging over the decades. This care plan may therefore need to be updated from time to time.

This document is for you to download, add your details, and then share with your doctors. It is to inform both you and them of the best information that we have about caring for you into the future, to enable those conversations, and to give some weight to them such that even the less well-informed healthcare worker may be able to see why you need this plan in place. I truly hope that it will succeed helping to improve the quality of life for many people, by improving long-term follow-up care and relief of late effects, in line with our organization’s objectives.

Our goal is to connect people who have been treated for Hodgkin Lymphoma, particularly long term survivors, with one another and with informed, experienced, and enlightened medical professionals – both allopathic and alternative/traditional.

Carol Bille Giller and Margaret Nash

Our hope is to support our fellow survivors, and their caregivers, by letting them know that they are not alone and providing information and tools to achieve optimal health and healing.

The Challenge

 

Paul Edelman, Davina Klatsky,and Cathy Pipcho at Memorial Sloan Kettering Cancer Center “Visible Ink” Reading

 

The Challenge

Long term survivors of Hodgkin Lymphoma may face serious, sometimes life threatening complications due to the late effects of their treatment. These could include heart and lung disease, secondary cancers, infertility, a compromised immune system, Radiation Fibrosis Syndrome (RFS) and debilitating lethargy. Many survivors may not know that they are at risk, and even their medical providers may be unaware of the special challenges Hodgkin's survivors face each and every day.

Our hope is to support our fellow survivors, and their caregivers, by letting them know that they are not alone and providing information and tools to achieve optimal health and healing.

Our Founders

There were many, many survivors who wanted the very same thing.

— Erin Cummings

ERIN GEDDIS CUMMINGS

Erin was just fifteen years old when diagnosed with Hodgkin Lymphoma, Stage IIIB, in 1972. She was treated with surgery and several courses of cobalt radiation therapy. After two recurrences of the disease, Erin was also given MOPP chemotherapy- largely considered an “experimental” form of treatment at the time. She managed to have a busy and full high school career, and went on to attend college and later graduate school, receiving a Masters in Social Work. She married and adopted four children from South Korea.

Like many long-term survivors of Hodgkin’s, Erin developed some of the negative side effects of that early treatment. They included thyroid, lung, and heart disease, requiring a thyroidectomy, lung biopsies, and open heart surgery to replace her aortic valve. Erin chose to have prophylactic bi-lateral mastectomies due to the increased risk of breast cancer for women with her medical profile.

Erin was fortunate to enjoy good health in between these multiple surgeries and hospitalizations. She credits it to the fact that she “kept moving, no matter what.” Since 1982, Erin has completed eight marathons, six as a member of “Fred’s Team,” to raise funds for Memorial Sloan-Kettering Cancer Center, where she was treated as a teenager.

In all her years as a survivor, Erin rarely came into contact with, or even knew about adult survivors of Hodgkin Lymphoma. After a chance meeting with a fellow HL patient at Massachusetts General Hospital, Erin became determined to find others who were “just like her.” Her search led her to the internet, and eventually to Dolly Griffin.

Our Founders

Dolly’s response was short and sweet. “I’m in,”

— Dolly Griffin

DOLLY GRIFFIN (WRITTEN BY DAVE COBB)

Dolly was diagnosed with HL in 1978, and after a staging laparotomy was determined to be Stage IIIB. She was given multiple doses of radiation and MOPP chemotherapy, as well as Interferon treatments. Dolly was originally given a prognosis of 3-5 years. She lived each year in fear, but furiously and robustly.

Dolly loved the learning process. After being diagnosed, she went back to school for a degree in Microbiology. Dolly took up painting, pottery, and jewelry making as hobbies. She became a Texas “Master Gardener.” Dolly became prolific at the computer, receiving multiple certificates for her proficiency and upgrading her skills level by level. She went on to create a career in assisting small businesses, but she also offered to help out anyone who just needed a computer “fix,” free of charge.

The long-term effects of the treatment for HL hit Dolly hard. She never regained her former strength. She suffered from chronic bowel issues for over two decades. She had her thyroid and gall bladder removed, and in July of 2014 was diagnosed with triple negative breast cancer. In spite of everything, Dolly maintained a gracious and optimistic attitude. She had the remarkable ability to find the best in others and to make the most out of each and every day.

Though always rather quiet and shy, Dolly became a spokesperson for the many long-term Hodgkin’s survivors that she met and supported through social media. Her wit, dry sense of humor, and incredibly generous spirit were far-reaching. Dolly was often the first person to respond to someone in need of advice or a virtual “hug,” and she was vigilant in her determination to remember and reach out to all those she encountered.

In 2015, Dolly and her husband Dave travelled through twenty six states in an attempt to meet as many HL survivors as possible. The “Dolly Train” was successful in bringing small groups of HL survivors together for the first time, creating immediate bonds and lifelong friendships, and engendering a commitment to what would eventually become “Hodgkin’s International.”

Board of Directors

We began as a group of former cancer patients looking for answers.
— Hodgkin's International

Our Board of Directors established Hodgkin’s International in search of a solution to some unusual medical problems occurring years after our treatment. Our regular doctors were often befuddled and didn’t know how to help us.

We, as long lived Hodgkin’s patients, want to help advocate for the changes needed to support survivors like us live a happy and healthy life.

ERIN GEDDIS CUMMINGS, MSW, LCSW

Diagnosed with HL in 1975 at the age of 15, Erin underwent surgery, radiation, and MOPP chemotherapy. She has had a number of long term effects, including heart and lung issues. Erin has an MSW and is a Licensed Clinical Social Worker. She lives in the Boston area and volunteers at at a therapeutic horseback riding program.

KARLA GUERERRI

Karla was diagnosed with HL as a teenager in 1976 and treated with surgery and mantle radiation. She has experienced a variety of late effects and explored allopathic and alternative solutions in order to live a healthy life. Karla is an educator with a lifelong career in New York State public schools. She has been involved with HL survivorship advocacy and support since 2013. She lives in New York State’s Capital District.

SANDRA (SANDI) M. LIBERATORI, ESQ.

While studying law in 1983, Sandi was diagnosed with HL. After a lymphangiogram and a staging laparotomy, she was treated with radiation and went on to finish her education and start a career. Twenty-five years later she began her ongoing struggle with a series of late effects. Sandi continues to practice law since 1985, in the Commonwealth of Pennsylvania.

NANCY MASTERSON

Diagnosed with Hodgkin’s Lymphoma in 1991 at age 25, Nancy underwent surgery for staging and splenectomy and mantle and abdominal radiation, but suffered a recurrence of her Hodgkin’s in 1997. She was then treated with ABVD chemotherapy. Nancy later developed sarcoidosis and has had a number of long term effects, including heart, lung, GI and thyroid issues. Nancy is an RN, working primarily in cardiopulmonary intensive care as well as in the health insurance industry. She resides in southern NJ and participates in water exercise classes for strength and conditioning. Nancy lives with her husband and 3 teenage daughters.

JANE ISAACSON

Jane was at boarding school in England when she was diagnosed with HL stage IIIA at the Royal Marsden Hospital, Sutton in 1978. She underwent a splenectomy, mantle radiotherapy and ChIVPP chemotherapy. She has suffered several late effects, including lymphedema and coronary artery issues- 35 years post treatment. She is a freelance translator working in Granada, Spain, anxious to promote late effects awareness in Spain amongst healthcare professionals and patients.

TESS NOWELL

Tess was diagnosed with stage 1A HL in 1982 at the age of 18, early in her medical training. She was treated with splenectomy and mantle field radiotherapy. She lives and works as a general practitioner in Oxfordshire, England, and has a special interest in end of life care. Because of her personal insights into late effects, she feels passionate about education and provision of information to healthcare professionals and patients alike.

CATHY PIPCHO

Cathy was diagnosed in 1989 at the age of 29 with HL, recurring again in 1994. Post-Hodgkin’s, Cathy went on to encounter many late effects, including breast cancer. Her background is in Aerospace Materials Management. She is currently works with Orthopedic surgeons. Cathy has strived to enhance her survivorship years with good nutrition. Along with volunteering in the cancer community, she actively participates in a local PlantPure Pod in Northeast Pennsylvania.

SOPHIA SMITH, PH.D

Sophia was diagnosed with HL as a teenager in 1975 and treated with MOPP/ABVD and radiation at Memorial Sloan-Kettering Hospital. She has experienced a variety of late effects including breast cancer diagnosis in 1996. Following this second cancer diagnosis, Sophia left a successful career in information technology at IBM to pursue her MSW and PhD in social work at the University of North Carolina at Chapel Hill.  She is an Associate Professor at the Duke School of Nursing where she teaches and conducts research that blends her love for technology with a passion for helping others.

KATHERINE STEVENSON

Diagnosed with Hodgkin’s at age 17 in 1989, Kat was treated with mantle radiation, and subsequently with a splenectomy, LOPP, and EVAP chemotherapy. As a consequence, she has had a number of long term effects, including both heart and lung issues. Kat currently lives in the UK and is employed as a Counsellor and Assistant Co-ordinator of a Youth Counselling Service. She is also on Macmillan’s Patient reference group for “The Consequences of Treatment/VMDT project” and administrates a Facebook support group for the late effects of Hodgkin Lymphoma treatment.