Monthly Newsletter- May 15, 2022

You are invited!
to our next Hodgkin's International Zoom Meeting- just for fun!
Wednesday, June 15 at noon EST and 5 pm BST

This is just a chance to catch up with each other, say hello to friends, and enjoy the company of your fellow survivors. All are welcome! Registration is required. Please use the link below to sign up. Hope to see you there!
Register for Zoom Meeting- June 15
On the Subject of Disparities in Hodgkin's Survivors....

Have you ever attended one of our Zoom meetings and wondered, "Why is this group so predominantly white? And female? Is Hodgkin lymphoma found primarily in Caucasians? Northern Europeans? What's the deal here?"

While we certainly do not claim to have the answers, we can say that we are more than curious. We are concerned. We know, from just a preliminary look at the research, that Hodgkin's is more common in men. We also know that, as with other cancers, Hodgkin Lymphoma is not specific to one race or ethnicity. 

The truth is that there are Hodgkin's survivors who are more vulnerable than others, and for many different reasons, such as access to care, socioeconomic differences, previous medical history, etc. There are long-term Hodgkin's survivors who may have different outcomes and life expectancies because of where they live in the world.

Our hope is to bring a bit of light onto the subject of disparities and differences in Hodgkin's survivors, with the hope that we can do a better job of supporting ALL survivors.  We begin with three articles that address slightly different aspects of this issue.

The first article, "Disparities Persist in the Long Term for Five Year Adolescent and Young Adult Survivors of Hodgkin Lymphoma" appears in The American Journal of Managed Care (AJMC) in August, 2021. It is essentially a synopsis of a research study published by The American Association for Cancer Research (AACR), published in September 2021. Here is an excerpt from the research:

"Half of the cohort was female, 10% was Black, 12% was Hispanic, 4% were non-Hispanic Asian or Pacific Islander, and 74% were non-Hispanic White. Non-Hispanic Black survivors had worse long-term survival compared with non-Hispanic White survivors. Their survival rate was 66% that of non-Hispanic Whites.

While all groups saw an improvement in survival from the 1980s to the 2000s, non-Hispanic Whites who received their diagnosis in the 2000s had survival times almost 3 times as long as those who received their diagnosis in the 1980s. In comparison, non-Hispanic Blacks and Hispanics with a diagnosis in the 2000s had survivals times that were nearly twice the survival time as those with a diagnosis in the 1980s."

The second article, "Study Finds Significant Disparities in Cancer Rates Among Racial Groups," is from Medical News Today and was based on a study in the British Journal of Cancer, appearing in March 2022. In this study, the authors found that "the incidence rates of certain cancer types, such as gastrointestinal cancers, thyroid cancers, and Hodgkin's lymphoma were higher in Asian and Black people."

The third article, "Disparities in Lymphoma on the Basis of Race, Gender, HIV Status, and Sexual Orientation" M Becnel, et al appeared in PMC PubMed Central, a publication of NIH and the National Library of Medicine in November 2017. 

Disparities in AYA Survivors of Hodgkin Lymphoma
Study in Great Britain: Significant Disparities in Cancer Rates Among Racial Groups
Disparities in Lymphoma on the Basis of Race, Gender, HIV status, and Sexual Orientation
 Margaret Tempero, MD

"A Note of Gratitude" by Austin J Price, MD, MPH
Appearing in the Journal of Clinical Oncology/ASCO

What a wonderful story!! If you have ever considered thanking one of your physicians or caretakers by writing a note to them, this article will convince you to just DO IT!
"A Note of Gratitude"- Austin J Price, MD, MPH
"Atrial Fibrillation and Heart Valve Disease: Top 13 Facts"
by Adam Pick, Heart Valve

Did you know...that a third to half of all patients develop A-fib after open heart surgery? And...that includes aortic and mitral valve replacement? Learn more about A-fib by clicking the link below.
AFIB and Heart Disease
Also from
"What's The Latest Update On TMVR?"

In this article, founder and author Adam Pick interviews Dr. Steven Bolling of Michigan Health regarding the status of non-invasive transcatheter mitral valve replacement (TMVR). 

While the TAVR (transcatheter aortic valve replacement) has been around for years now, TMVR is still under study. The reasons for this have a great deal to do with the structure and complexity of the mitral valve. Here more about these procedures and what may be available in the way of trials for TMVR.
Latest News on Transcatheter Mitral Valve Procedures
Xenia Rybak

I first met Xenia at a "Stupid Cancer" conference in Denver, Colorado in April 2017. Stupid Cancer is organization that supports the adolescent and young adult cancer (AYA) community. I saw Xenia two years later when we gathered in DC with the other members of the inaugural class of Elevate Ambassadors for the National Coalition for Cancer Survivorship.

To say that Xenia is a powerhouse of energy, compassion, and committment would be an understatement. She is all of of that and more. This video is featured on the CDC website (Centers for Disease Control and Prevention, USA). While Xenia does not happen to be a Hodgkin's survivor, her voice will resonate with anyone who has ever been diagnosed with cancer. 

I am very proud to know Xenia. Listen, and you'll know why.

Xenia's Story
Hyuna Sung, PhD

"Do AYA Cancer Survivors Face a Higher Risk of Developing and Dying from a New Primary Cancer?" 
In the ASCO Post, May 4 2022

This article highlights the research of Hyuna Sung, PhD and her colleagues on the risk of adolescent and young adult (AYA) survivors developing a new primary cancer. As the author points out, much of the currently available research has focused on childhood survivors, not AYA survivors. This study concludes that there are significant differences and risks for AYA survivors that demand further scrutiny. 
Risk of New Primary Cancers in Adolescent and Young Adult Survivors
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