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Hodgkin’s International

Supporting Long-Term survivors through connection, education, and advocacy

Hodgkin’s International is a non-profit (501.c3) organization founded in 2017

Our vision is simple. it is-

“To improve the quality of life for long-term Hodgkin Lymphoma survivors, where ever they may be.”

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You are not alone!

Like many of you, we have been desperate for information- information that was sometimes hard to find, even from our health care providers. Cancer survivorship is still a relatively new field, and for “good” reasons. When we were treated for Hodgkin’s years and years ago, the survival rate was much lower than it is today. The primary goal of medicine decades earlier was to CURE cancer, period. The long-term effects of radiation and chemotherapy are only now being understood.

Far too many Hodgkin’s survivors have discovered that they are at risk for serious health issues AFTER they began to have symptoms. Worse, they often have to convince their doctors that their symptoms are real.

This website is designed to give Hodgkin Lymphoma survivors up-to-date information about anything and everything related to survivorship. You will find stories from other survivors, all who have “been there, done that” in “Survivor Voices” on our “Resources” page. On the same page, you can view a bibliography of scholarly, clinical articles about long-term effects under “Articles/Research Papers on Late Effects.” There are a number of helpful hints, blogs, and suggested readings in the “News Feed” section of Resources. All of these can be reached by clicking the tabs at the top of our Home Page.

We will be adding new topics every month to our Home Page, and we invite you to share your own thoughts, ideas, concerns, and questions. (If we can’t find an answer, we’ll find someone who CAN!)

Thanks for visiting, and welcome!

 

Sophia Kustas Smith, Board Member, Hodgkin’s International- speaking at ASCO Annual Meeting 2018

Sophia Kustas Smith, Board Member, Hodgkin’s International- speaking at ASCO Annual Meeting 2018

Heidi Lynn Blatt-Poakeart, celebrating 29 years of survival!

Heidi Lynn Blatt-Poakeart, celebrating 29 years of survival!

Late effects of earlier treatment for Hodgkin’s- the basics

Long-term survivors of Hodgkin Lymphoma may face serious health issues as a consequence of earlier treatment modalities, particularly older forms of radiation and chemotherapy. Here are some of the late effects we need to be concerned with:

Heart Disease

Lung Disease

Thyroid Disease

Secondary Cancers: Breast Cancer, Lung Cancer, Leukemia, Non-Hodgkin’s Lymphoma, Thyroid Cancer, Esophageal Cancer, Skin Cancer, and others

Radiation Fibrosis (RF): where normally healthy tissue becomes “sclerotic,” or hard and stiff

Pelvic Radiation Disease (PRD): for those survivors who received radiation therapy to their pelvic region

Debilitating Fatigue

Compromised Immune System: especially for those without a spleen

Infertility

Depression

These are just a few of the possible late effects that survivors might expect. Older forms of radiation and chemotherapy are now known to have toxic, sometimes life-threatening consequences. Hodgkin’s International is committed to providing education and support to survivors who may be dealing with these problems. For more detailed information, including clinical research articles, blogs from fellow survivors, suggested reading materials and links to other support services, please navigate to the “Resources” page above.

Let us know what we can do to help YOU. Email us at erincummings@hodgkinsinternational.org.

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DID YOU KNOW…..

Between 2 and 3 million non-melanoma skin cancers and 132,000 melanoma skin cancers occur globally each year

One in every three cancers diagnosed is skin cancer (world-wide)

Skin cancer is the most common cancer in the United States: one in every five Americans will develop skin cancer in their lifetime

Melanoma rates in the US doubled from 1982 to 2011 and continue to increase

Australia had the highest rate of melanoma in 2018, followed by New Zealand

Risk factors for all types of skin cancer include skin that burns easily; blonde or red hair; a history of excessive sun exposure, including sunburns; tanning bed use; a weakened immune system; and a history of skin cancer.

(Statistics from the World Health Organization and the American Academy of Dermatology)

A study done in 2013 by the National Center for Biotechnology Information (Daniels, Krol, et.al), concluded that:

“Radiation therapy for HL is associated with a strongly increased long-term risk of secondary skin cancers, both compared to the general population and to treatment with chemotherapy alone.”

We strongly urge Hodgkin’s survivors who have undergone radiation therapy to see a Dermatologist on a regularly (yearly) basis and more frequently (per doctor’s recommendation) for those who have had one or more skin cancer diagnoses. We will be posting more information about skin cancer, risks, and preventative measures during the month of May. The following is a link to the article cited above. You will find additional articles in our “Resources” page on this website.

Long-term risk of secondary skin cancers after radiation therapy for Hodgkin's lymphoma. - PubMed - NCBI