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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.

Michelle Wright and Karen Crossley- both long term Hodgkin’s survivors

Michelle Wright and Karen Crossley- both long term Hodgkin’s survivors

News Flash! June 21, 2019: "Hodgkin’s International to research and develop Public Service Announcement (PSA) regarding Late Effects”

With support from the National Coalition for Cancer Survivorship (NCCS), Hodgkin’s International is working on a project to develop a public service announcement for long-term Hodgkin’s survivors. The growing body of evidence regarding significant, sometimes life-threatening consequences of earlier treatment has motivated us to take a strong stance on educating our fellow survivors. It is clear that there are far too many survivors who have no idea that they are at risk.

Clinical research now points to several areas of concern for those who were treated with earlier forms of radiation and chemotherapy. The statistics are alarming. For example, authors Bhakta, et. al. reported on findings from the St. Jude Long-Term Follow-Up Study in the September, 2016 issue of LANCET that:

“..survivors aged fifty years will experience more than two times the number of chronic cardiovascular health conditions and nearly five times the number of more severe (grade 3-5) cardiovascular conditons compared with the community controls and, on average, have one severe, life-threatening or fatal cardiovascular condition”.

In addition to cardiac and pulomnary complications, we now know that Hodgkin’s survivors are at risk for several secondary cancers, including Leukemia, non-Hodgkin’s Lymphoma, thyroid cancer, lung cancer, esophageal cancer, skin cancer, and more. Women who have had radiation to the chest, particularly at a younger age, are at a very high risk for breast cancer. The National Cancer Institute (NCI) posted an article in January 18, 2018 (Withrow, et. al.) stating that:

“..ER-negative cancers were nearly six times more common in Hodgkin Lymphoma survivors than they were among the general population, compared to ER-positive cancers, which were three times more common”.

It is not unusual for survivors to be in good health and “disease free” for years, even decades after treatment. They may no longer be followed by an oncologist, or, in some cases, by anyone at all. Unfortunately, many General Practioners (GP’s) or Personal Care Physicians (PCP’s) are not savvy about late effects. They, along with far too many oncologists, may not recognize symptoms of late effects when they occur, or they may attribute them to other conditions.

The combination of serious late effects and the lack of awareness on the part of both survivors and caregivers demands that we, as an organization, DO something. Our PSA message will be clear, concise, and uncompromising. It is our hope that the process of creating a Public Service Announcement will, in and of itself, go a long way in bringing much-needed attention to what, for many of us, amounts to a “health crisis”.

We are at the beginning stages of this project. We welcome your thoughts, ideas, and input. It is our intention to make the PSA “global” in nature, so it is important that we hear from survivors outside the US. We need your support! This can be in the form of writing about a personal experience, sharing research/information/data, expertise or connections in the area of public advertising, production, etc. We recognize that this is a huge undertaking, but we are committed to giving it our all.

For the complete articles mentioned above, see our “Resources” page.

You can write us at the email address below or contact us via our Facebook page.

Thank you!