Late Effects Hodgkin’s International Survivor Stories

Supporting Hodgkin’s Lymphoma Survivors Through Connection, Education, and Advocacy

Hodgkin’s International is a non-profit (501c3) organization dedicated to improving the quality of life for long-term Hodgkin Lymphoma survivors. Our goal is to connect survivors with one another and to provide them with essential information about the Late Effects they may face as a result of earlier treatments.

We also seek to promote education and medical research in the area of survivorship, foster a better understanding of the particular needs of long term survivors, and to advocate for the interests of Hodgkin Lymphoma survivors around the world.

You are not alone!

Like many of you, we have been desperate for information- information that has often been hard to find, even from our health care providers. While the study of cancer survivorship is no longer a new phenomenon, there continues to be a gap between what researchers know and what survivors NEED to know. Many of us are finding that even our own doctors are unaware of the “Late Effects” of earlier treatments. 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 provide survivors with up-to-date information about cancer survivorship, and most importantly about the Late Effects that are particular to the Hodgkin’s community. We ARE a community. This is a place for guidance AND connection. You will hear from other survivors, read their stories, and know that you are not alone.

Late Effects

Long-term survivors of Hodgkin Lymphoma are at risk for serious health issues as a consequence of earlier treatment, particularly older forms of radiation and chemotherapy. Some of these potential risks include:

Heart Disease
Chronic Obstructive Pulmonary Disease (COPD)/ Lung issues
Thyroid Disease
Secondary Cancers
Radiation Fibrosis (RF)
Pelvic Radiation Disease (PRD)
Debilitating Fatigue
Compromised Immune System
Infertility
Depression

These are just a few of the possible Late Effects that survivors may be challenged with years, even decades after treatment. We provide more detailed information as well as resources on this topic in the section “Late Effects”‘

Survivorship Care Plan

It is vitally important that long-term Hodgkin’s survivors are followed closely, even years after they reach remission. Many Late Effects are “silent,” meaning that they may develop gradually, without notice, and then suddenly become problematic.

Survivor Stories

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Andre’s Story

“The urgency to care and to share what resources I have, whether inner or outer resources is paramount to me”…
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Karen’s Story

“Once I stop and think of things that happened in the past, they really do define who I am today”…
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Sharon’s Story

“I really had no idea what Hodgkin’s Disease was. I was young, naive, and living in the pre-internet era”  …
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Mitchell’s Story

“There were so many complications, all due to the scarring from cobalt radiation. I needed a miracle. I was lucky”…

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