Monthly Newsletter- December 15, 2022

Meet Sheilagh Foley, a Hodgkin's survivor with a familiar tale to tell, and she does it so beautifully. She perfectly describes the fear, the struggles and the frustration in being misunderstood by medical providers.
Sheilagh's story appeared n the Irish Times earlier this week. Hodgkin's International was mentioned as a resource, and we are thrilled to have the "shout out!"
I'm a "Syringe Half-full' Kinda Girl
From the Leukemia and Lymphoma Society:

This a detailed update with recommendations for those who are currently in treatment as well as for survivors who may be immunocompromised.
Covid Update: Who Remains at Risk?
Cancer, the Flu, and You
from Coping Magazine

Here are some current recommendations from the US Centers for Disease Control and Prevention on preventing and treating the flu. The article discusses flu treatment for cancer survivors as well as those in treatment.
Cancer, the Flu, and You
"Let's Talk About Sex After Cancer"
A recent article tin Coping With Cancer

"Sexual side effects are just as important as any other cancer-related side effect you may experience."

From Erin:
Honestly, I never thought about sexual side effects that way. I've spent so many years dealing with other late effects, and ones that I would consider to be life-threatening, that sexual side effects are often the LAST thing on my mind. It would be tough to think about having sex when I get winded just climbing the stairs. And then there's the whole body image thing...The scars from open-heart surgery and bilateral mastectomies are sometimes hard to ignore. 

I wish it was easier to talk about sex after cancer. I have a feeling that I'm not alone.

This is a brief article on the subject. 

Let's Talk About Sex After Cancer
"Pediatric Hodgkin Lymphoma Survivors Experience Accelerated Epigenetic Aging"- in MEDPAGE TODAY

This is an interesting study based on data from the St. Jude cohort of Hodgkin's survivors. (AnnaLynn M Williams, PhD, Wilmot Cancer Institute, author.) It  describes "epigenetic aging," which is essentially one measure of whether or not individuals are aging faster or slower than their chronological age. Here is an excerpt from the study:

"Our hypothesis is that treatments like chest radiation and alkylators are accelerating their biologic aging, placing them on a different trajectory for these neurocognitive outcomes," Williams said. "And they are happening sooner than they would have had they never been treated for cancer in the first place, so it is more of an accumulation of damage from all of the things they have experienced."

Research studies like this one may produce valuable tools for intervening in a survivor's post-treatment plan. As the authors state:

"Our hope is that this biomarker [EAA] may help us identify those survivors most at risk for early-onset cognitive aging, and might actually help us gauge a preclinical response to interventions, so that we can see efficacy sooner than other endpoints," said Williams at a press briefing."

You can read the entire article by clicking the link below. You'll need to log in to MEDPAGE to read the entire transcript, but it's easy to do.

St. Jude study on Accelerated Epigenetic Aging in Hodgkin's Survovrs
(Above) Cora Fahey, Rep. Mark DeSaulnier, Erin Cummings
The Comprehensive Cancer Survivorship Care Act (CCSA)

After years of hard work, a crucial piece of legislation that would greatly benefit cancer survivors has finally been introduced to the United States Congress. Just yesterday, Representative Debbie-Wasserman Schultz held a press conference to introduce the Comprehensive Cancer Survivorship Act (CCSA). She was joined by other House Representatives and Senators, including Representative Mark DeSaulnier of California. I was lucky to have met Representative DeSaulnier as an advocate with the National Coalition for Cancer Survivorhip NCCS) in June 2019. Along with my fellow advocate, Cora Fahey, we had the opportunity to discuss this bill and to thank the congressman for his unwavering support. 

This is a HUGE step forward for us! Read the announcement by NCCS below, and find out how you can use your voice to help.
Comprehensive Survivorship Legislation-US
Post-Cancer Fatigue: The Invisible Wound
by Kathy LaTour, in Cure

If we were to poll Hodgkin's survivors around the world, we are guessing that the most common late effect for all would be fatigue. For some survivors, it is a transient annoyance. For others, it is a debilitating consequence of earlier treatments for Hodgkin's. This article, appearing in Cure, tells the story of Wendy Harpham, a long-term non-Hodgkin survivor who has been dealing with fatigue for many years.
On Post-Cancer Fatigue
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